Love, Life and Aspie Antics

My name is Petunia and I am a...

2011-07-16T06:49:00.000-07:00

I'm thinking of joining AA... no, not Alcoholics Anonymous but Apple Anonymous! At last count in this house we had three iPhones, an iTouch and the latest addition to our family is the iPad. We love our technology in this household and if it was a choice of buying new clothes (I hate clothes shopping) or even buying nice food, a new gadget will win hands down EVERY time! They are not cheap by any means but I'd stake that anyone who has one of these iOS will understand exactly where I'm coming from. Thankfully, now that most mobile operators are supplying them, its easy enough to get your hands on a free phone these days and just watch your usage to keep the cost of your monthly bill down.

I'm sure there are doubters out there though that still believe that giving your child a piece of technology is akin to an electronic babysitter. Where sitting your child in front of a tv for hours a day watching cartoons isn't going to be hugely beneficial to them, there are huge advantages to having a device such as an iTouch. Munchkin has been using the apps on my phone for a couple of years now and I marvel at the ease she uses them. When we started, we used ABA Flashcards from Kindergarten as they were free for World Autism Day a couple of years ago (and incidentally are still free now) and wherever we were, she had access to them. Could you imagine lumping around boxes of cards to work while you're waiting for appointments? Eh no. There are some fantastic applications out there which are autism/speech delay specific. One that I saw grow from an idea to an award winning one is of course Grace App. A fantastic communication app that helps not only children with Autism, but any child/adult with speech delay. There are countless numbers of people using this app now in place of or in conjunction with PECS. Once again, which is easier to carry around for portability? A large bulky folder full of laminated and velcroed pictures, or a device that any child would be seen carrying?

I could go on and on about the vast quantity of quality applications that are both fun and educational for the child to use but we'll be here all year... I have over 100 books stored on our devices for Munchkin to have at her fingertips. I "attended" an App Party on Facebook recently where developers gave away apps or discounted them heavily so we have dozens of fabulous educational apps now loaded up and ready to use. A special mention to two iPad apps that Munchkin loves now has to go to "How are You?" which is an interactive, brightly colourful book app that teaches about feelings and emotions through their stories, and "Dexteria", a wonderful app that was developed by occupational therapists and helps improve fine motor skills through, tapping, pinching and the more advanced "write it" part of the program.

On a social level, giving your child an iOS is not going to stop them interacting with other children. Look at any child with one in their hand and there's usually another one looking at what they're doing, sharing in the experience and comparing what they have on their own device. It gives them a common interest that they can talk about. Of course they're going to play games on it to but hey, that's helping hand-eye coordination right?

If you do decide to take the plunge and get one of these iOS, some advice I would give you is to get a good protective cover! Munchkin has broken her screen twice on the iTouch but thanks to product replacement cover have managed to get new ones. My friend Lisa recommended the Otterbox Covers as has extensive experience with kids dropping or throwing the phones when she brings them into schools to train with Grace App. She recently had a stand at the Autism Show in London and demonstrated frequently how well the covers work by throwing her own phone on the ground. I now have an Otterbox Reflex cover on my new phone and my iPad now sports a very robust Defender case. Both incidentally have hit the ground since and survived to tell the tale so I'm happy (no I didn't test them Lisas way, Munchkin dropped them!)

From both sides of the fence... I'm Angry

2011-05-31T01:57:00.000-07:00

I woke up this morning feeling like two of the Seven Dwarfs... a little bit Dopey due to the confusion as to why our Government has let the most vulnerable in our society down, but more Angry (I'm using creative licence here... Angry/Grumpy right?) at the state of affairs that was highlighted in Primetime Investigates last night. For those who haven't seen the program, watch it here and be prepared to cry and get angry too. If there was a dwarf called "Lucky" I would consider myself that one too.

I'm one of the lucky ones, my children don't have the extensive care needs that others I have met and know over the last few years have. I'm lucky that my little girl has progressed and will go to mainstream this September. I'm lucky that I have good friends and family that have supported me along this journey. I feel sick to the stomach that I've bemoaned my lot when seeing what others have to deal with on a daily basis due to the chronic neglect from our powers that be. I'm lucky and very thankful that I've been equipped and able to provide my child with services that were never forthcoming. Others are not so fortunate.

I recently contacted my Autism Liaison Nurse for help. I haven't pushed for assistance up to now as was fobbed off with the "cutbacks" line but being a single parent and having to go into hospital for a week for a hysterectomy, I felt it wasn't a want help situation but a need help one. The line I was given was that to give me help, others that need it more would suffer as they'd have their hours cut as there was nothing in the budget left. I was angry and wrote a letter to the ALN and her superiors asking for a response in writing. That was over two weeks ago and guess what... no response. After watching the program last night, it made me cry that its people like this that they are suggesting taking hours from.

I provide home support myself as work for the HSE (Health Service Executive) and although I've given them ample notice of the three months I need to take off after the operation, they will not be replacing me while I'm off recovering, the family I work with will lose the hours I provide until I return in September. This disgusts, worries and upsets me and has left me feeling that I personally have let them down. I know many carers and health care attendants that harbour this feeling of frustration and upset at letting their clients down when in fact its the pen pushers and management of our health services that should be hanging their heads in shame, not us. Its impossible not to feel responsible though when you see the family you work with run themselves ragged caring 24 hours a day for their children, with minimal support that they have had to beg and fight for. Who is going to care for the carer when they have physically and emotionally burnt out?

Guidelines were passed down recently to all HCAs working with children denoting the new regulations... For years we have not been allowed to drive the children we work with, we are not allowed to feed them if they're peg fed (highly unworkable as if the parent is in another county at hospital with another of the children what do you do? Let them starve to make sure the HSE isn't legally responsible? eh no...) The newest regulation is that any HCA working with a minor cannot be left alone with them and its up to the parent to ensure that another adult is present at all times with the carer. It defeats the purpose of respite and support if the parent has to remain while you work. If there was a family member or other adult that could be present, there wouldn't be the need for the HCA there... Is this what the pen pushers are aiming for? If there is a non HSE adult available to be there the next question for the parent will by why do they need support if they have someone who can come in? Can hear the axe swinging as I type this...

Between cutbacks in community care and our health service, and caps on resource hours and Special Needs Assistants (SNA) in schools, what future are our children facing. Can our new Government do the math and add up what its going to cost down the line by hacking away at the supports and services now? I really hope so.

Grieving? But no-one died?

2011-05-26T02:49:00.000-07:00

I recently did studies on the grief process and the different stages involved as part of my course and got to thinking how applicable this process is when you get a diagnosis of autism in the family. Although its not a death that you're dealing with, you still go through the stages as the future and plans you had have changed for you and your child. There are five stages in this process, Denial, Anger, Bargaining, Depression and Acceptance. If you are lucky like me, you get to the acceptance part in a reasonable time limit but you do still find yourself dipping in and out of the other stages on occasion...

Denial

Oh how well I remember this stage... the one where it was easier to bury my head in the sand in the hope that I was wrong. Sure she's young, she might grow out of it. I'm wrong, there isn't a problem, its all in my head. You stay here for a while in the hope that it will go away, the signs and flags are waving but you choose to ignore them for a while until the moment that the "penny drops" and your world starts crashing in on you!

Anger

Why my child. This happens to other people! When did I become one of them?!? This is so unfair that my beautiful little girl has to deal with these challenges. You become angry and frustrated that it happened to you and your family instead of Joe Bloggs down the road. Then it hits you that you always pitied the "other people" and get angry that you don't want to be patronised or pitied although you yourself have been guilty of the very same actions in the past. You get overwhelmed with the why me's until the answer hits you.... Why NOT me? This was something my mother taught me when she became ill and I wanted to know why she wasn't angry that she'd been dealt a duff hand although she'd lived a healthy and clean life. It was when she answered "why not me?" that I realised the wonderful lesson she was teaching me. Things can't always happen to "other people"...

Bargaining

We start looking for cures, for answers. If I do XYZ it will "fix" my child. We look for the magic bullet that will restore all our hopes and dreams. We hear what we have to do to help our child to improve their communication, their quality of life and we do anything possible to do it. ABA, OT, SALT, Social Stories, Schedules, diet, supplements etc. How many autie parents do we hear state that they'd sell their houses and bankrupt themselves in the pursuit of the latest therapy available. Unfortunately there are sharks out there that take advantage of parents at this stage promising that the latest "batshit therapy" is the "cure"... Swimming with dolphins is something that whilst a wonderful experience, it's not going to miraculously start your child talking in full sentences.

Depression

Hanging upside down for 3 hours a day, drinking the dew from buttercups hasn't fixed the problem. You realise that its going to be a long slog and damn hard work. Your life becomes a ritual of appointments, reports, letters and fighting for services for your child that will work. Its easy to lose sight of your own needs and let them slide. Unfortunately, getting run down and tired has its own pitfalls. One of these is the "Black Dog" of depression. You want to retreat into your cave and hide for a while until someone who cares for you and supports you drags you back out. Don't be afraid to talk to your GP. Sometimes we all need a bit of help in the shape of a little round pill, its nothing to be ashamed of. While medicinal help is good to deal with your depression short term, its getting a support network established and in place whether a local group or an online group that's vital. Having others who understand and "get it" will help drag you from the cave that which seems attractive but is so debilitating in the long run. Ask for help...

Acceptance

Ok, so life isn't going to be the same as you thought it was going to be. Let go of the old dreams and create new realistic ones. Whats important is not your dreams but your childs dreams. There are plenty of successful, entrepreneurial people out there living life with autism. Many many autists go to college, have successful careers, get married and have children of their own. Don't look too far into the future as it's impossible to tell right now what capabilities and strengths your child will have 20 years into the future! Embrace and enjoy their current strengths and capabilities and stop looking at what they can't do... look at what they can. Acceptance is the greatest gift you can give your child. Different doesn't mean wrong, just not the same. Don't let anyone make you feel that way.

I've found over the past two years that as Munchkin has moved about on the spectrum (and they do, you're not stuck at the same stage always as the day you get your diagnosis!) I have moved about between the different stages of grief. Acceptance is great when you get there, but you will have days when new challenges arise that you'll slip back a few stages or dwell in bargaining or depression a little while. Thing is to keep moving back towards acceptance and getting on with your lives. I know its easy for me to say this as Munchkin has made such amazing progress but that in itself can put you back to the denial stage until autism shows its face again and you need to pull yourself through the different stages. I guess they don't call it a rollercoaster of emotion for nothing eh?

A letter to my daughter

2011-04-07T14:15:00.000-07:00

My darling Munchkin,

As I lay with you in my arms tonight holding you tight as you needed your "huggles", I delighted in the feel of my arms wrapped tightly around you. I looked at your angelic little face and drifted back to a time when I wasn't so blessed to be able to touch you...

When you were born, you were not content in my arms. Where I saw other mothers feeding their babies and watched them bond, I wondered why it was that you were so uncomfortable in my arms. I so desperately craved you to look up in my eyes as you fed and feel that connection that others seemed to find so easily. No matter what way I positioned you, there was never that ease as you strained away from my touch...

As you got older, the only way you were "comfortable" on my knee was to be facing away from me. As soon as you had finished the last drop of your bottle you slid off my knee like I'd electrocuted you. I was envious of the other mothers stories of how their babies would reach out and touch their faces and plant sloppy kisses on their mouths. I can admit now how jealous I was of that which others took for granted. I took comfort that you wanted to sleep in my bed with my arm across your chest even though you wouldn't let me put my hand on you. I know now that you were seeking the pressure the weight of my arm gave you but it was something that I valued greatly.

I remember reading a quote just after the penny dropped when I realised you had autism. I burst out crying as it touched home to me. It was from Helen Keller and it read "Love is like a beautiful flower which I may not touch, but whose fragrance makes the garden a place of delight just the same." I decided though that I needed to be able to touch you, I wanted to be able to touch you...

I spent countless hours with you sitting sideways on my stomach on the sofa, reading you book after book as you loved being read to. Slowly you grew to accept this as long as I wasn't trying to hold you there. I tried everything to desensitize you to the feel of my hands. As you watched your beloved Peppa Pig, I used the opportunity to stroke your feet briefly or to massage your arms. It took time but you got used to this routine and grew to like it. Every morning for half an hour before we got up, we would play the "name the animal game" and every time you did the sound I would tickle you for a brief second or two.

Holding your hand wasn't accepted by you at all. This made going out in public very difficult as you would pull away and then run to get away from me. We ended up only going out in the buggy as it was the only safe way to have you out. With the help of your tutors and the occupational therapist we worked tirelessly on getting you to put pressure on your tiny hands, rolling you over back and forth on your gym ball, making you "walk" forward on your hands to get your jigsaw pieces. We played so many games that involved touching that you didn't realise what we were doing, you just enjoyed the "game".

That almost seems like a lifetime ago now. Every time you put your hand in mine, or give me a hug and a kiss my heart feels like it will burst with happiness. You have no idea of the joy you bring to me my baby. These days you love for me to tickle your back, you give me amazing huggles ( your name for hugs/cuddles) and actively seek out contact with me. I love these moments and will never take them for granted I promise. To see you hold your friends hands makes my heart swell...

I do wish that you would let others hug you or give you a kiss though. It would make your grandparents very happy to get a big squeezy hug but the little ones you do give when asked are the small steps towards this goal. I'll be selfish and say that if you never have the ease of contact with another the way you do with me, I'll still be happy.

Thank you

Mom xxx

Whats worked for Munchkin?

2011-01-09T13:11:00.000-08:00

Its been a while since I blogged. For various reasons I've neglected my blog and apologise to anyone who may have been following to see Munchkins progress. I'll bring you up to date with this post...

I get asked a lot "what has worked for Munchkin" as she's made such incredible progress over the years. Part of me gets a little irked at times when I think a parent is looking for the "magic solution" that will "cure" their child. Lets be straight folks... there is NO CURE for autism or aspergers but there are many many therapies that will help your kiddy reach their full potential. Its also not a quick fix or something that you can throw money at to make the problems go away. Its a hard slog and somewhat frustrating at times but with hard work and a lot of input, you can make huge strides in helping your child understand and cope with whatever issues they are struggling with.

So back to the question... "What's worked for Munchkin?"

When the bottom fell out of my World and I heard the confirmation that she has an ASD, like many I took a little while to pick myself back up off the floor, dry the tears and realise that having a nervous breakdown (which allowed me to hide in my own little world for a while), or looking for the answers in the bottom of a bottle of Cabernet Sauvignon wasn't going to help the situation. I needed to become her advocate, her tutor, her teacher and look for practical help. If I was to wait on the never ending waiting lists for therapies, it would be time wasted and lost forever. In this country you find yourself in Limbo, waiting for someone to come and fix the problem. DON'T! Find a local support group, if you can't get out get online support, join Irish Autism Action and get some guidance. There are many courses out there that a parent can avail of to learn how to teach your child. ABA, PECS, Lamh etc... YOU are going to have to put in the work if your child is going to reach their goals. I was lucky that I'd already done courses in Applied Behavioural Analysis and Verbal Behaviour and so had a head start in that I could set up a program for Munchkin. Be aware though that there are plenty of sharks, sorry therapists who will offer you xy&z for large sums of money with false hopes of curing your child. In my opinion, you may as well be throwing wads of your hard earned cash into the toilet. Whilst swimming with dolphins might be nice if you're on holidays, its not going to fix your baby.

We dabbled with the GFCF diet for a year and made great progress. On reflection, I have to question if it was indeed the restriction of foodstuffs or the intense ABA program I had implemented that gave Munchkin the push into verbalising and communicating. She has no restrictions in her diet now and still making forward strides.

In her Assessment of Need she had an occupational therapy assessment. I found the therapist to be very informative of what sensory issues and needs Munchkin had. I took notes on how to help and put the exercises into her home program. A year later, she was still on the "list" for therapy and my local support group Cottage Autism Network provided her with an updated assessment so we could see where she was at that stage. Some of her issues had been overcome and new ones came to light and I was then able to tailor her sensory diet and adjust her program myself. By the time she moved up the list after a few years, we had dealt with many of her issues. Boy was I glad I hadn't waited for the HSE OT slots....

Speech and Language she received when she attended a special needs preschool. She received daily group SLT and once a week she had an individual session with the speech and language therapist. Everything that they were working on in school we were also still doing at home with her.

Home Tuition. This was a godsend as we had the cream of the crop when it came to home tutors. The most amazing person came into our lives in the form of Ursula. She was the teacher in the local ASD unit and hand on heart, I will always be indebted to her. Finding a good tutor is paramount when setting up your home tuition program and we've been so lucky in the three tutors that Munchkin had. DON'T just leave it all to your tutor though. Become involved and work together as a team. As I said earlier, you can't just expect others to fix the problem and the more involved you are in all aspects of your childs program the better the outcome is going to be...

Socialisation. Hugely important! There has rarely been a day since I first suspected that Munchkin might be autistic that she hasn't been around other children. At first there was resistance and little interaction but now she has a host of kids that she refers to as her friends. Sure she might meet someone for the first time in the playground and tell me they're her best friend but hey, she's really social and interested in other kids now.

Play skills. We taught Munchkin how to play with her toys. This doesn't come naturally to a child with ASD and lack of imaginative play is a huge problem for many of our kids. Through ABA and a reinforcement schedule, she learned to play. To look at her now happily playing with her toys its hard to remember back sometimes when this wasn't the case. And as for her imagination... well its amazing!

School. She's now attending an ASD unit full time. It was a difficult decision whether to place her in the unit or not but I met with the school and they agreed that it would be a great stepping stone to mainstream next September. While she has no problems expressing herself verbally there are other behaviours that can be worked on while learning the social rules of school. They are teaching her how to transition and helping her focus on tasks etc. I know that come September, she'll be fully ready to mainstream.

Well that's whats worked for Munchkin... We've both learned so much over the last two years and continue to do so. I'll leave you with a quote from "Parenthood", a show I watched last week which struck a chord with me...

"The greatest barometer for success for children with Aspergers is their parents involvement"

Never Too Late To Educate...

2010-09-13T12:58:00.000-07:00

The sun has set on the Summer and mothers and fathers all over Ireland are breathing a collective sigh of relief that the little monsters, sorry our beloved offspring, have returned to the structure and routine of the school year. Summer holidays, while relieving us of the dreaded school runs, can be a time of stress when you have a bored child bouncing off the walls. Personally I think the holidays are far too long but there is an element of jealousy there when I look at the Gruesome Twosome roll into the kitchen in the afternoon while I've been up since stupid o'clock being subjected to Peppa the Precocious Piggy and other such delights that we're all familiar with. I would gladly buy Dora a sat nav at this stage rather than listen to her singing...

This year is particularly poignant for me as my eldest heads off to spread his wings. As immensely proud of him as I am for nailing the Leaving Certificate and securing his place in Trinity College, its a strange moment to let go after so many years. His bags and belongings have been packed up and I dutifully drove him to Dublin at the weekend to start a new chapter of his life. Thankfully my parents live there so have been able to transition him slowly as he'll go torment them with his bombsite room that smells of cadavers.. why oh why do all teenage boys room smell so bad? Answers on a postcard please and a prize for anyone who can solve this lifelong riddle...

So that leaves two still in the proverbial nest. I'll still be kept busy trying to secure services and resource for the little birdies left in my care. Yani has started the senior cycle now and today we started medication for her ADD. Hopefully it's as successful in helping her concentration as it was with her big brother. She's a very clever and capable girl and its frustrating when her ADD and SPD cause such difficulty for her. She described it quite aptly at her appt with CAPS today as sitting reading the text and willing the words to go in... the information reaches her eyes and seems to bounce back to the page shes reading. Classic problem that many of our children have when it comes to concentrating and taking in the information needed to study. Fingers toes and eyes crossed that the medication filters out the extra stimulus that distract and help with her auditory processing.

Munchkin has had an interesting start to the school year... She's moved up to the number one spot on the waiting list for our local unit but in the meantime she's attending a NT preschool. For the most part its going extremely well and she skips in the door in the mornings with a smile on her face. My heart dropped when called over by the preschool leader last week to say that they were having problems... trying to escape from the playground, stripping, hitting and running around during circle time to name a few. I have a journal in school that they are filling in every behaviour and problem they are encountering with her so that I have a written record to show the SENO when she moves to the unit to make our case for an SNA stronger. Watch this space as they say.

And me? Well I'm heading back to school too as I'm a firm believer that its never too late in life to learn something new. It's only part time but nervously anticipating being a student again. I better go buy myself a lunchbox and get an apple for the teacher while I'm at it :)

Pack Up Your Worries.....

2010-08-10T13:10:00.000-07:00

Did you ever feel like just running away... just packing a case and leaving all your troubles behind? Well I finally did it. After a chat with Mum and saying how much I needed a holiday but couldn't afford to take one, she told me I couldn't afford not to. If I were to crack under the pressure I wouldn't be any good to anyone. That's all the arm twisting I needed to promptly organise to send Munchkin to her father for a week and fill the fridge and presses with food for the Gruesome Twosome. It something I think every parent dreams of but seldom plucks up the courage (or stupidity) to do. I'm not going to bore you with the details of the pressures leading up to my bolt for freedom but suffice to say I was bowing under the considerable pressure. So off I went armed with sun lotion, mental bubblegum books that required no effort to read and most certainly didn't contain the "A" word, and the perfect travel companion whom for the purpose of this blog shall be called Vixen :)

Vixen (yummy mummy to a couple of Aspie/Auties), and myself jetted off on a whim to Tunisia where once there, we quickly settled into our new surroundings. We had decided to go all inclusive as neither of us had the energy or decisiveness after a stressful year to even make decisions such as where to eat or what to do. When you've spent all year making difficult decisions, and being the primary carer for your children, sometimes you just don't have any head space left for the mundane choices. Its astonishing though when you are so used to "doing" all the time, how slowly time actually passes as several times over the week we felt as if we were in a time warp!

We discovered our Inner Auties on holidays and on one of the last nights, had a discussion over our dinner at how comfortable it had been NOT to feel the pressure to talk, or feel the need to explain that you weren't in a bad mood, or upset, you just didn't want to open your mouth and fill the silence. That's not to say that we didn't communicate during our time away, just communicated in grunts or nods if it was the wrong side of noon... Sometimes silence is indeed golden. It was amusing to note that we sat at the same table in the dining room each night, varied our food only a little and lounged on the side of the pool in the one spot all week....

At the resort, the majority of people spoke French as a first language. Vixen has no French and I have some so it was interesting trying to communicate with others. Essentially, Vixen was the non verbal one and I was the newly verbal with my Pigeon French. It struck us that this must be how our kiddies feel when in social situations and finding it difficult. I really had to struggle to listen and found that I could comprehend far more than I could verbalise. Vixen laughed at the fact that even if she said "I don't understand", someone would speak slower and say the exact same phrase as if that would make the difference, again and again.....

At the markets, we were hassled beyond belief by the traders and locals attempting to catch our attention, talk to us, get our business and we learned extremely fast that the best and most effective way of ignoring them was to avoid all eye contact (sounding familiar?) It was actually liberating to not feel the pressure of social niceties and allow yourself to be "rude" and totally blank these strangers who wanted to invade our personal space. I found a new appreciation of why and how our kids sometimes blank us or appear not to see or hear us. Its not "rudeness" as if that was the case we'd have spent our time just saying bog off. It was easier and far more effective to just ignore completely!

All in all, I think we learned a lot from our holiday. Not only did we get to relax and recharge the batteries, we discovered a little what it feels like to be inside our children's heads even if just briefly, and I must say, I liked it :)

Better than The Brady Bunch :)

2010-06-29T12:22:00.000-07:00

Many of my blog readers will be sick of reading how important it is to have friends that "get it" and have heard me wax lyrical on many occasions about the friends I have made on Facebook over the last year and half, but once again I'm going to tell you why this is so meaningful.

Last weekend, two girls who I now consider close friends even though we only met a year ago, came to stay for a night with their three gorgeous sons. We had discussed this visit on our Facebook pages and pretty soon, another two mums decided to pack up their kids and head for the coast on an hour and half road trip to come have a picnic with us on the beach. We all met at my house on the Saturday at lunchtime so we could go to the beach together and off we headed, armed with blankets, towels, food and high expectations of having a great afternoon in good company. The sun smiled on us and when we arrived we parked ourselves close to the waters edge, ready to run as needed. Between us we had 9 children, 2 auties, 4 aspies, 1 under assessment, 1 with dyspraxia and a toddler. Add in copious amounts of ADHD and we were ready for a fun day out...

Before long one mum was shouting for assistance to come take her phone out of her pocket as she was wading out to retrieve her young man who looked for all intents and purposes, determined to head towards Wales without a backward glance. As she managed to drag him back to land he managed to slip out of his shorts, preferring to turn the local beach into a nudist one hehe. We all enjoyed seeing the looks of excitement on our little ones faces as they paddled, crawled, rolled in the sand and did what they do best, be kids. We attracted some looks on the beach but as we are all seasoned elephant hide wearers, none of us were bothered by the attention. At times it was poignant for me to see Munchkin want to play with a little group of girls, but lacking the social skills necessary for her to join in. Despite having a vast vocabulary and excellent speech, she still falters when it comes to joining in with NT kids as she struggles conversationally.

After we had had enough of eating sand sandwiches and the beach in general, we all headed back to my house to let the kids continue to play alongside each other while the mothers were able to chat and relax a little with the front gates firmly closed. It was a very enjoyable afternoon and when the ladies from the Midlands left that evening, there were four nudies jumping on the trampoline until it was time to come in and get ready for bed. Amazingly, all four kiddies settled well that night and us mums sat chatting in the kitchen until the wee hours.

The next morning, all four kids were in fabulous form and we decided to take them to the local play centre where they burnt off some of the copious amounts of energy they store in such small bodies! Afterwards it was off to MaccyDees to meet up with another lovely FB family who were visiting the area and more laughing and chatting over our fast food before the gang all headed back to their own homes. On Sunday night, I sat and realised how quiet the house was now and how I missed the company of the girls and their wonderful kiddies.

Most people would think that having that many kids with special needs in your home would be stressful, but it was quite the opposite in fact. Not having to explain why your child likes to do naked acrobatics or why the ice pop is the wrong colour/shape/brand is very liberating. Not having to explain your childs behaviour or worry that people will think its poor parenting to allow drawing on a brown wall (well it did look like a giant chalkboard!) is so refreshing. It was also lovely to see the "friendships" between the children evolve. Whoever says that all aspies or auties are not interested in having friends is talking through their posteriors... I saw lots of bonding and even if they didn't communicate like NT kids, they were certainly enjoying each others company!

And in The Blue Corner...

2010-06-22T05:34:00.000-07:00

Its been another busy month filled with twists and turns along the way. We finally had the verdict from our private assessment done back in February after a drawn out standoff between myself and the HSE to get access to Yanis records. Despite many many promises to provide Solas with information, the letter just wasn't forthcoming. It wasn't from the lack of phoning and contacting them that it took so long but rather a stubborn reluctance for some reason to provide anything in writing to me. Several months of fighting for the information and a stand off in the GPs reception taking witnesses details and copies of correspondence between CAPS (Child & Adolescent Psychiatry Services) and our GP were furnished to shut me up. It takes a lot for me to "lose it" but after being lied to and told that letters had been sent to me which obviously hadn't, I arrived in person to get copies of the letters from CAPS. After they looked in the file, it was apparent that the letters didn't actually exist! To gain access to the files myself, I would have to apply under the Freedom of Information Act and pay for the privilege. Hence the drive to the GPs surgery and my demands that they furnish me with what they had on file and the subsequent standoff! It was a revelation to read that back in Feb 09 they queried atypical autism and ocd to be further assessed but then sat back and did nothing, happy to leave her on medication and take it no further. I now understood why they were so reluctant to let me have the correspondence! I would have taken her for assessment privately a lot sooner had they not sat on this information. They did however, at every meeting we had, raise the subject of AS so I eventually took the bull by the horns and had her assessed myself...

After thorough assessment back in February, we finally got answers to Yanis behaviour and issues. A full Occupational Assessment showed that she has SPD (Sensory Processing Disorder) which when explained to us made so much sense as to why she would be oversensitive to some visual and auditory stimuli. It made sense now why she got so upset if The Elder Lemon would forget to take his ADHD meds and be tapping and clicking and unable to prevent himself doing so... So now I have one who moves and taps uncontrollably at times, and one that cannot tolerate the sound or sight of him doing so... ummm interesting times lol. Certain sounds such as eating noises would be so distressing and distracting for Yani over the years meant that we no longer eat as a family as it really wasn't worth the tears and tantrums that ensued. We used to joke that she would never find someone to marry when shes older as even the sounds of people breathing bother her at times! (This one I can relate to... I could never sleep facing my ex as I would be tempted to put a pillow over his face if he breathed on me hehe) Anyway before I digress, this was one issue that was highlighted and made sense to us. It was also brought to our attention that she has some gross motor difficulties and needs OT to deal with that. I better not joke that she runs like Borat any longer...

With regard to Aspergers Syndrome, the psych assessment showed that she had some features of AS but not enough to warrant a diagnosis so we can put that behind us now and stop wondering if that was a possibility. I now had something to bring back to the team in at CAPS when we met. They had pulled out the big guns and I was now to meet with the head psychiatrist for the South East region. Apologies were issued and verbal admissions made that she should have not been left that long without further investigation. We had another very lengthy meeting where the top man himself spent time with Yani and came back to me with the diagnosis of ADHD Inattentive Type also known as ADD. Some of her symptoms of ADD may be related to her SPD and lethargy but you don't get resource hours in school for SPD so an official diagnosis is being made and letters written for the school so that Yani may get resource for the senior cycle. Meds are also being discussed and will be started during the summer. He also has referred Yani for a full speech and language assessment as feels that she may have a pragmatic language disorder so that requires further investigation. I finally have the HSE sitting up and paying attention that we will fight hard to get what services she needs to make the most of the rest of her schooling. Its just a shame we've had to fight this hard!

So I have that part of the battle sorted.. I thought that I had all the fights done for the coming school year for both Yani and Munchkin, but of course life isn't like that when you've got a SENO that used to steal the jumpers from the makeshift goalposts as a child, but that's another blog post...

Jump? Sure... How High?

2010-05-27T07:38:00.000-07:00

Gosh its been a while since I blogged last... I've been busy training for the circus you see. Laugh as you might, I think I may have qualified as an acrobat since we last met... And who has taught me such a skill? Well I'm learning this art courtesy of our very own health service providers, the HSE and the Department of Education and Science have thrown in a few lessons along the way. They are equal opportunity trainers, but if I'm honest, I think they favour our group at times as seem to focus on training us at every opportunity...

I first started jumping through hoops before I even met "The Professionals" at the HSE and the DOES, but the hoops I thought were difficult to navigate and jump through were only training hoops. A straight run and with a little effort you jumped right through. Inconvenient but not unsurpassable. Since those days though, the HSE and DOES have introduced me to a whole new level of hoops and obstacles to navigate on my path to get my children the services they need and are actually entitled to! When you have filled in the gazillionth form, and bought your own photocopier as have that many forms/reports/letters to post out what seems like on a weekly basis, and think you have things under control, another hoop appears...

Unfortunately, like circus lions, I have discovered that if I want to get to where I need to go, I need to play the game and when the Ringmaster says "jump" its better to ask "how high" than resist. As a wise woman once said, you catch more flies with honey than vinegar. She also told me that the "squeaky wheel is the one that gets oiled." When you are tired doing mental acrobatics, sometimes you need to step back, gather your energy along with your thoughts, and when you are ready, take another bash at it.

Whether is a refused DCA application and appeal, a request for reports, applying for Home Tuition, an SNA review or the fight for Speech and Language Therapy, or Occupational Therapy, you need to find the best way to approach the hoop to make it through. Sometimes you will need the support of others to help you along and give you a "boost up" when you feel you have no energy left to jump. Others who have navigated the course can be valuable allies as even thought the route may change from time to time, they will have information and advice how to handle your particular situation.

I think what I'm trying to say is "don't give up". The reason these hoops and obstacles are placed in our way is, in my opinion, to make it more difficult for parents in the hope that some will not pursue it further. A shameful way for the Government to save money at the expense of our children. What they don't bank on is us all coming together and in a show of strength helping each other navigate. When your child is diagnosed, you are not given information on what your entitlements are or what you can apply for. If you know any parent in this situation, please tell them, show them and guide them towards the information they need.

Right I'm off to sew some ostrich plumes to a leotard and post my CV to Duffys Circus...

Mother of an Adult.. A New Era has begun...

2010-04-27T06:50:00.000-07:00

Ok, who decided that at the age of eighteen you become an "adult"... seriously, who actually thinks that eighteen year olds are mature enough to be able to vote, drink, get married etc... I really think that this needs to be reviewed.

Years ago, if you were of my parents generation, you were handed the key of the door as such on your eighteenth birthday and you went on your merry way. Moved out, got employment and probably settled down in your early twenties with the person you would spend the rest of your adult life with, raising your children and setting down roots (I paint such a pretty picture ;) But nowadays, it is more common that your "child" lives at home until their late twenties and continues their education well into their early twenties. Perhaps if they are lucky enough, they travel the World before settling down.

My eldest turned eighteen last week and the thought terrifies me. He is now classed as an "adult" and apart from the obvious benefits being cut, there really is no difference to when he was fourteen in my opinion. I still cook his dinner, do his washing and do a taxi service for him. He still attends school and will sit his Leaving Certificate in a few weeks time. I have the summer to prepare him for moving out as we have no university where we live and he'll have to live in Dublin when he goes to college. I have to let go of the reigns and let him figure things out for himself... He'll be responsible for feeding himself, making sure he takes his meds and generally keeping himself safe. No wonder I'm terrified! Yani has told me she's NEVER leaving home and thats a whole other issue to deal with...

It got me thinking to what the future holds for Munchkin and I hold the hopes that in fifteen years time I'll be having the same worries about her going to college and taking care of herself. That's the long term aim but who knows what her capabilities will be at that time. I think of friends whose children have more needs than Munchkin and wonder how they deal with their worries for the future and know how lucky I am to have my first in the starting blocks preparing for uni. I shouldn't think too far into the future as still have to secure a place for Munchkin in the ASD unit to give her the best chance at mainstreaming and inclusion so to think fifteen years forward is silly but unavoidable at times. After all, it doesn't seem that long ago that my manchild was a little boy...

My Child is not a Stereotype...

2010-04-13T08:12:00.000-07:00

Its Autism Awareness Month, and I've realised lately how my own perceptions of ASD have changed over the years, and how easy it is to mentally file things into stereotypical files in our heads. For many years, I would have been the one who conjured up an image of Rainman when the word autism was mentioned and even though I have an autistic relative, I'm ashamed to admit I knew remarkably little about the disorder. Back in 2004 this all changed when a very lovely little boy came into my life and taught me there was so much more to ASD than I had imagined. While I worked with him, my attitudes and preconceptions changed and I fell in love with this child. It broke my heart when the family left Ireland and I knew that I would no longer see him but was very grateful for the lessons I learned during the few years I spent with him.

While working and training in ABA/VB I met a lot of parents and children, but not being a parent of a special needs child myself, it was difficult to truely understand what life was like for them. Yes, I spent five days a week working with kids on the spectrum, but its NOT the same as being their parent. Most of the children I met were nonverbal and would have had challenging behaviour at times so when I got pregnant with Munchkin and at 33 weeks pregnancy realised that autism could possibly be on the cards with my little girl, I panicked. I vividly recall saying to a friend that I could handle any disability that was dealt up to me, (I had refused prenatal testing for Down Syndrome even though I was classed as an "older" mother at 37). Anything that was, EXCEPT autism! I cried and hoped and wished that it wouldn't be the case. Looking back now, I realise how unfounded those fears were but thats with the wisdom of hindsight (why can't you buy that stuff by the crate eh?) As educated in autism as I thought I was, I still had a long way to go understanding this complex and huge spectrum!

Three and a half years on and a hell of an emotional rollercoaster later, I'm still playing mental pingpong at times, making me realise that I STILL have a lot to learn about ASD. Because Munchkin has progressed so much, I often kid myself that I can't see her aspergers anymore. I question my own sanity and her diagnosis on the good days, then get a dose of reality when I see it again. We have adjusted our lives, our homes and everything we do and LIVE verbal behaviour so much that we don't chart data, or click mands, it just comes second nature to all living in the house. I hear a lot from people who don't meet us often, that how could she have aspergers, "sure she can talk can't she?" Its not until they try to have a conversation with my gorgeous girlie that they realise there is a difference between talking and being conversational...

People tell me how lucky I am that she has come so far and I agree, but there has to be a flip side to this too and I think its the constant questioning in my own mind (and in many around me!) I do accept her aspergers and love her unconditionally, quirks and all. I am so greatful for the progress she's made and exceptionally proud of her, however instead of getting a pat on the back or a well done, you quite often get the original diagnosis questioned instead. You automatically defend as know that yes, she's doing great, but have you LOOKED at the sheer volume of intervention she's had, how hard she's had to learn what she knows and how the struggle you've had to get here, so you start pointing out the quirks, which almost feels like you are betraying your child! I was asked recently about "recovering" and "curing" my child and would I remove the autism if I could. My personal opinion is that if I removed all traces of Munchkins autism, I would be removing her personality as its as much a part of her as the colour of her eyes. Now ask me again, would I like to make life easier for her by teaching her skills to help her? Hell yeah, of course I would.

How can I do this I wonder... well raising awareness of autism as a huge spectrum is a start. Channel 4 are showing a very good documentary which started last night called "Young, Autistic & Stagestruck" which follows 9 autistic adolescents who are all effected by autism in varying degrees and personally I found it enlightening (review here). For once I saw a program that didn't just focus on nonverbal asd, but also on aspergers, and much as I hate the term "high-functioning" autistics. I finally could imagine what Munchkin could be like when she's older and am looking forward to the rest of the series. I thought the show would make me feel sad, but I was pleasantly surprised how the makers are shooting it with empathy and sensitivity and think its a good start to stop stereotyping our kids.

Finally to dispel a myth about aspergers, I'll answer some other questions to save you asking if you meet me... no, my daughter isn't gifted, she won't be the next Bill Gates, she cant do any tricks and we have no plans to go to Vegas to count cards ok? :P

The Power of Reinforcement

2010-04-06T12:55:00.000-07:00

I've struggled lately to blog, really struggled trying to think of something to write about and the realisation hit me that this was because I had started to write for the reader, rather than for myself. When I first started blogging, I found it cathartic to be open about my feelings and talk about our journey, however, lately I have found that as I'm not "anonymous" anymore, and several people know me in person, or through my family, I'm more aware of what I put to paper. This in itself has made me cautious and I've lost the groove as such. In other words... I no longer found it reinforcing.

All autie and aspie parents will know the value of a good reinforcer. A good one can help turn a reluctant learner into an active participant in a task. We learn very early on that what we would previously have thought of as "bribery and corruption" had another name when applied using the principals of ABA (Applied Behaviour Analysis).

In short, a reinforcer is an item or activity that can be used as a reward for attempting a task that will ensure that the child will attempt that task again, (or in jargon - Reinforcement is a term for the delivery of a stimulus, (immediately or shortly) after a response, that results in an increase in the future rate or probability of that response). Its something that happens to us all everyday of our lives, but we never really put a name on it. People who dislike their jobs, but who smile when they reach payday, parents who hate cooking, but who love to sit around the table with their family watching them enjoy the food they've prepared (well ok, maybe not in this house, but I do believe it happens in some houses :) The donkey who follows the carrot dangling before him... ok I'm going to far now... but you get the idea!

When you are faced with a diagnosis, words such as ABA, PECS, Lamh, Intraverbals, Mands, Echoics etc... all seem like a foreign language, and many parents are daunted by the thoughts of what they'll have to learn to help their child. Some parents might prefer to take the ostrich approach for a while, afraid of starting something they feel they themselves might not understand. The jargon and lingo are rattling around like a foreign language inside their heads and it is easy to forget when talking to the parent of a newly diagnosed autie or aspie that they don't understand the language yet. There is a fantastic introductory course in ABA detailed on the IAA blog here that if you can get to, please do. Having someone translate the jargon will help you realise that it's not an impossible task, and in fact is quite logical and makes a huge amount of sense. If your child is non verbal, there is a two day PECS course which you can read about here, and if your child is already using PECS, perhaps you might like to look at this post about the Grace App for the iPhone and gladly throw the dreaded laminater in the bin...

(right, blog post done... now for that chocolate I promised myself :)

Happiness is.....

2010-03-23T14:25:00.000-07:00

The lovely Jen from The King & I has tagged me on her blog for a Happiness Award which I get if I tell you all ten things that make me happy everyday. Before you laugh, its harder than you think! I seem to have spent so much time moaning lately its great to have the chance to reflect on the things that make me happy...

1. The Elder Lemon... My firstborn and only son. He gets up every morning without me having to call him and gets ready for school. When I appear in the kitchen, he always greets me with a smile and a hug.

2. Yani... My middle child and eldest daughter. She has a smile that can light up a room and everyday I look at her and am astonished how I managed to end up with such a stunning daughter. Not only is she gorgeous, but she is also smart (even if she doesn't believe that, I know she can do anything if she applies herself).

3. Munchkin... the baby in the family but the one who we all revolve around. She has the most amazing smile and eyes you can drown in!

4. Knowing I'm doing everything possible for my kids to reach their full potential and seeing them strive to get where they want to be. Imagining The Elder Lemon walking through the arch at Trinity in September with his future lying ahead of him. There was a time I thought I'd have failed him and he might not get there so imagining this scene makes me smile.

5. Listening to Munchkins little voice, regardless of the time of day or night. I don't think I could ever tire of hearing her talk. Her laugh is infectious and sense of humour developing daily and this is one of the things that makes me happiest.

6. My Facebook family. Without whom I'd no doubt be in a padded cell by now! You all make me laugh every day and keep me sane :) You "get" me!

7. My home. Well it is my castle...

8. The smell of freshly cut grass (especially when its mine and I know it doesn't need doing again for another week lol).

9. Tea! I could give Jeanie from Planet Outreach-ASD a run for her crown with the amount of cups I drink every day :) It has to be sipped (well guzzled!) from my favourite mug which is a hideous floral pattern but it just tastes nicer from a bone china mug!

10. Last but not least, hugs and kisses I don't have to ask for. There was a time where Munchkin had to be bribed and coerced to give a non committal hug and kisses were out of the question as she was unable to purse her lips and has oral sensory problems. I get an unsolicited kiss every morning from her and then she'll rest her hand on my face for a while. I love that moment and it makes my heart swell and almost burst every time she does it!

There, I did it! I now have to tag some others to follow suit and even though I'd like to tag everyone, will keep it to a few.

Hammie @ Hammiesblog
Jazzy @ Jazzygal
Claire @ AJ - My Superhero
Andra @ The Perfect Storm
Patsyperdu @ The Odd Adventures of Dr. Destructo
Mandie @ The Fabulous Mr Luca
Lisa @ Autimom & The Butterfly

If you're happy and you know it flap your hands :)

2010-03-19T15:07:00.000-07:00

We are finally on the mend in the house after a few weeks of coughs and colds which turned into bronchiolitis which meant antibiotics and the new challenge of Munchkin accepting a Ventolin paediatric mask. We got through it and this week, once she wasn't at risk of coughing up a lung she went back to school.

She was so delighted to be back at her school that the only words that could describe her was she was "happy flappy" as she was like a little bird waiting to take off with excitement. She's always flapped but not so much when she's concentrating on a task. I've noticed her doing it a lot more lately, usually the left hand flapping from the wrist when she's happy or excited about something, and both if she's REALLY happy. Its a little like the movie Happy Feet but with Munchkin its happy hands!

We had plenty of the double handed flapping at a recent visit to the cinema. I had prepared well and purchased the tickets a day in advance to reduce queueing but decided on the day to see how obliging our local Cineplex would be on producing the IAA card. There wasn't very many people there so I approached a manager behind the counter and politely asked would it be possible for Munchkin and I to sit at the back in the posh seats so that Munchkin wouldn't annoy the people sitting around us during the movie by kicking the seats, jumping up and down etc... I was told I could sit there but would have to pay the €20 per seat charge. It was at this point I flashed her IAA card FBI style at her and said that's a shame, the cinemas in DUBLIN acknowledge this card... I don't think she'd ever seen one before but before we knew it, we had been escorted to the VIP area personally by an usher! I have to say it was such a wonderful experience because of this. Munchkin was able to jump up and down, stretch, lie down and even watched part of the movie upside down as decided to lie on the seat with her legs on the back and her head hanging off the edge. But we made it through the entire movie and she ate her body weight in popcorn! She hasn't talked about going to the cinema but I know it must have been eventful for her as over two weeks later in the back of the car she starts singing "Let's all go to the lobby.. let's all go to the lobby" (funny how the advertising spiel before the movie can make such a lasting impression!)

What happened my Picket Fence??

2010-03-05T03:39:00.000-08:00

Oh dear God... the grass is growing... Why does this not make me happy? Spring is finally here and the days are getting longer, the weather is improving and the daffodils in the garden are starting to bud. But the grass.... why does it have to grow?? I love the smell of freshly cut grass but I'm just so tired already, and now I know that soon enough I'm going to have to add it to my list of "things that need doing"

You see, I'm a single mum with a couple of ex husbands behind me, so I have to do everything. I can deal with all the autism related stuff, I can run a home program, organise tutors, work, pay the bills, make the appointments and cope with all of that without cracking up. Its just how it is now. All decisions are down to me and in some ways that's actually better, as I don't have to run everything by another person and butt heads on whats best for the kids. My exes know that I only have the kids best interests at heart and will always put their needs before my own.

Lately though, I'm finding myself resentful that my life didn't turn out quite as I expected it. I think we all have this image in our heads when we were younger of what our "grown up" lives would be like. I rushed headlong into marriage to get started on this portrait but it wasn't to be. OK, put yourself back together, you have two kids now that need you so just pull it together and provide for them. We muddled along quite nicely and became the Three Musketeers. I was hesitant to change the dynamics of our family unit but then found myself in another relationship and we plodded along nicely for the best part of 5 years, but that wasn't to be either and we amicably went our separate ways, but not until I had uprooted my family and moved us to the countryside (and the half acre of grass that just keeps growing!!).

Loneliness set in and there is nothing worse than being lonely while surrounded by people.It was then I met my second husband. It was a whirlwind romance and I got caught up in the momentum and we quickly married despite there being indications that all was not quite right. The person I thought I married didn't turn out to be the person I ended up with. But I was pregnant on Munchkin at this time so we tried to make things work. Despite 5 months of counselling, our communication difficulties were too difficult to overcome and we separated.

So that was it... back to the Three Musketeers but now we were Four. I can't regret any of my life as it gave me three wonderful (even if they are challenging!) kids. I can't help feel that someone snuck in and stole my picket fence though. I really wish that I didn't have to make all the decisions, that it would have been nice to have someone to talk things through with, to make plans with and share the worries with. Someone who would have been my partner and companion as we got old together and laughed at how the grand kids were karma for the way our kids were as teenagers. But that's not possible now. I chose my path in life and I just have to accept it which I do for the most part. Its just when the grass starts growing it reminds me that its just another thing to do... I'll put it on the list after I put the bins out...

It's all starting to make sense now...

2010-03-03T13:36:00.000-08:00

February was a tough month for our house. I received the new OT report for Munchkin which showed up areas that she had problems in that I hadn't realised. There were deficits in her gross motor functions that I as her mother, should have noticed already, but hadn't. Then we had the assessments in Solas...

Almost a year ago, Yani was diagnosed with ADD and Clinical Depression and the HSE put her on Prozac. Nothing improved over time and her symptoms of the "traits" of OCD and ODD were getting worse. Every visit with the clinical psychologist there were queries over Aspergers. I didn't buy it but decided that it needed to be ruled out or it would keep popping up like an unwanted guest, demanding that some attention be paid as it wasn't going away. So I took her to Solas to get answers once and for all.

There we met the lovely Marissa who did a full OT assessment on Yani. I must say, it didn't come as a huge surprise to me to find that she actually had very similar results to Munchkin. Gross motor skills were poor, balance and coordination, pen skills and attention. She had problems with auditory and visual processing. I was told that she met the criteria for SPD (Sensory Processing Disorder). After Marissa explained how this effected Yani, it all made sense. The crying, tantrums, temper, and emotional outbursts over simple things that others don't notice suddenly became clear.

What did surprise me was that they didn't believe that she was depressed, rather that her body energy levels were very low and that her "motor" ran on a very sedentary level. Its not that she's lazy, or tired or not bothered, rather that her body works on a different level to others. It really did make a lot of sense and we were relieved to find there were answers at least to some of our questions.

In the psychology assessment, at first I felt once again that I was "looking" for problems until I spelled out that we were there to rule aspergers out, not in. During the assessment process, as Yani answered the psychologists questions, I realised why the HSE psychs kept mentioning aspergers. Certainly there are things that could raise a flag or two, but on the whole I seriously and honestly didn't think we would get a diagnosis. They ran a cognitive test and did the Vineland Assessment. Unfortunately, her school had not returned their assessment forms in time for our appointment, so we couldn't get feedback at the end, however the psychologist did say that she couldn't rule it out at this time. I was told though, that regardless of the outcome of the assessment, my eldest daughter required a host of therapies including emotional regulation therapy, anger management, mind reading skills etc. I guess I'd better start looking for a second job to pay for those as know that the HSE won't be providing them to her! I'm very angry with myself that I let them just stick my little girl on meds and I as her mother didn't persue her problems sooner.

So we wait as the school was closed for half term and when I chased them up when the school opened afterwards, they hadn't done them, despite having had the paperwork for a week before the break. So we sit in a kind of Limbo til we put the pieces into the final jigsaw to get the full picture...

The Importance of Understanding

2010-02-21T06:19:00.000-08:00

I got a full nights sleep!!! Its amazing how much better and brighter the day is when you get a straight eight hours sleep with no interruptions, no little feet dancing in the bed, no elbows or extra limbs (you know our kiddies grow an extra set of legs and arms when the lights go out... well it feels that way when you are getting the autie or aspie version of Riverdance on your back or head during the wee hours!)

I had become increasingly frustrated lately as every time Munchkin slept in her dads house, he would report that she had no problems sleeping and made me question even more my own parenting skills. I wondered it if was the double bed she gets to sleep in that helped her settle well there. Or the fact that he marches her up mountains and they are constantly on the go when she's there so was tired out. I racked my brains and though that if I did the same, she may sleep here. I dragged her to the beach, the forest, marathon trampoline sessions or if it rained, the bed in the spare room had its strength seriously tested. But no, like every other night, she resisted sleep til gone midnight. Things marginally improved after I was given a prescription for Melatonin from the paediatrician during her review and I could get her to bed 9.30ish each night but she never stayed asleep.

It was only after her recent OT assessment that it was explained to me that Munchkin wasn't actually kicking me or hitting me but sensory seeking by pressing her feet and limbs up against me. Its very common with kids with proprioceptive problems. She constantly seeks input to gauge her position by pressing up against me over and over during the night. Once I knew why she did this, it actually didn't bother me as much anymore. Its amazing what a dash of understanding can add to the mix! She used to only sleep as a baby if my arm was across her chest (not my hand, just my forearm) and the OT recommended that I use a weighted blanket in the report I received the other day. It was only then that things fell into place regarding her sleeping pattern at her dads. While explaining the report to him, he informed me that he uses two duvets and a blanket at his house as he didn't want her to be cold and he couldn't afford to use the heating. She was getting the equivalent of a weighted blanket while there! With this new information, I set to work that night. I got a heavier duvet and stuffed it into her single cover. I put a bed rail up, as the OT explained that even though she doesn't fall out of bed, she would be subconsciously checking her proximity to the edge. I put her to bed and waited for the magic to happen....

3am and there is screeching at the stairgate in her room... I go to the room to see that she has stripped off earlier in the night as dirtied her nappy and got back into bed. She's then wet the bed so that was the end of that attempt! I had thought we'd got past the stripping off in bed stage but will have to break out the Houdini suits again.

Last night we tried again. On of the facebook mums suggested a duvet under her also so I set up the bed. One duvet under her, a feather and down pillow and a doubled up duvet on top of her. She's in her Houdini suit so we're good to go. 4 mg Melatonin and some milk and lets see what happened. I sneaked back up ten minutes later to check on her and.......

She may be holding onto the wall and rail but she looks so snug in her cocoon! And yes, amazingly, she stayed there all night :D I have fingers, toes and eyes crossed that it continues to work as I feel like a different person today. If not, I may have to reconsider the duct tape and staples solution... (relax, I'm only joking so take your finger off the speed dial to the social workers hehe)

Look, I DO fit in :)

2010-02-07T09:56:00.000-08:00

A few days ago, myself and the tutor lauged so much as Munchkin squeezed herself into a canvas shopping bag. It never ceases to amaze me where she'll manage to make herself fit. From a very early age, she would climb into strange places. You would find her sitting in a toybox or drawer looking at her toys rather than take them out to play.

When we visited a friends house, she would open the dresser and pull out all the contents from the bottom shelf and then slide into the press and happily lie there for a while while I had a coffee. My friend kindly removed all breakables from this dresser as it became a weekly event! In my mothers house, there is a press in the kitchen which she likes to sit in with the doors closed over at times.

I never paid much heed to this little quirk of hers until talking to the Occupational Therapist. It seems that she gets some needs met on a sensory level by doing this. A lot of children on the autism spectrum have proprioceptive difficulties. Hammie described this in a post on the IAA blog here as "The sense of knowing where you are in relation to the Earth" and gives a very simple example of if we close our eyes, we can still touch our nose with our finger. I still remember seeing Munchkin tryin to eat chips with her eyes shut one day and more that a few nearly went up a nostril!

As part of her OT program, I do deep pressure and massage with her. One of her favourite things is to be rolled up in the duvet and squashed. She loves lying on a beanbag and being squashed with the other beanbag. She loves the pressure that is exerted on her little body and recently squeezed herself into a pillowcase so that her big sister could swing her gently while in her "cocoon". As she gets bigger we'll have to either get a body sock or a single duvet cover at the very least!

I find that she has difficulty realising what size she is in relation to items also and will get quite frustrated at times that she can't fit into the toy car/bed/box she's playing with. As small as she is, there are certain limitations as to what she can actually fit into! It doesn't stop her trying however hehe...

I'll leave you with one of my favoure photos I took when I found that she had emptied the toys out of her shelving unit to use as a ladder to climb into and have some chill out time....

*edited to add video under strict instructions of the Queen of Blog, Hammie!

What's Sleep Got To Do With It??

2010-01-27T16:39:00.000-08:00

"When I was a child I used to hate going to bed... Now I cherish every hour of sleep!"

I saw this posted up on Facebook earlier and I couldn't help but physically nod in agreement as I read it. Sleep... its something we all need in order to survive and keep our mental faculties intact. Unfortunately Munchkin doesn't realise that! She's never been a great sleeper from the start, often waking three or four times a night and ending up in bed beside me, as it would be the only way I could get one eye shut if not two. In the early days, while she was still a baby, I accepted that there would be some degree of sleep deprivation involved as with all babies... (you can spot a sleep deprived mother a mile off, with the telltale black bags, and I'm not talking Prada dahling!) Thats what babies do... they eat, poop, sleep and cry and repeat this cycle over and over. Usually though, sometime midway throughout their first year of life, they will eventually settle into a sleep pattern, waking less and ending up sleeping their 12-13 hours straight through to morning by about a year...

Unfortunately, with Munchkin, and with many other children I know on the spectrum, sleep deprivation is more common than sleep. For some reason, our kiddies need so much less sleep than other kids their age. I occasionally get lulled into a false sense of security when my pixie decides to toe the line and give me a night or two in a row, making me believe that perhaps the torture of the night time waking is actually ending.... But no! Bam, we're back at square one :( I do hold onto some hope though... Her older sister woke every night until she was over 4 so maybe, just maybe....

The effects of this broken sleep don't appear evident in Munchkin, who can happily run around, and laugh and smile etc as if she's had a 12 hour marathon kip. Nothing seems to knock her off kilter. She does her puzzles, plays with the toys, does her tablework without fuss and stays in relatively good form during her sessions in school and with tutors. So why is there a problem I hear you ask....

I guess the problem lies with me... I struggle to function to the best of my abilities when I'm tired. Standards slip when it comes to everything as I wouldn't necessarily have the energy to give things my best focus. Just the other day, after a 5am rising with madam, I had to go to work which I found very stressful as the child I work with was extremely frustrated with not being mobile, so took it out on my hands using her nails. I then had to go collect Munchkin from school and go to the local book shop to get some stationary and books that Yani needed for school. We went up to the top floor to buy the books and then came downstairs to look at the puzzles for madam. Being tired, I looked at a box and when I looked down... she was gone! Oh no, where is she... theres a door that opens out onto the street... panic.... I start shouting her name over and over hoping she's going to answer me. Next thing, a counter staff girl shouted over "I think she just went up in the lift"! Great!! I run up the stairs and find her on the upper level. I got angry, really angry... Not with her, but with myself for letting my guard down and letting her give me the slip! Even if I'm exhausted, I cannot let the guard down!

Time for action... I can no longer function as a law abiding, kind, happy, intellegent, useful member of society without my 8 hours a night. I have discovered the frightening "Sleep Deprived Driving" which means I can be often seen having a catnap at the side of the road when can drive no further... When I was younger, they used to joke that if sleeping was an Olympic Event, I'd bring the gold home for Ireland every time. I LOVED my sleep.I had it down to a fine art, and could sleep standing upright on the 75 bus to work every morning. Gawd, I miss those days! So whats my plan of action....

I have in my possession now, the holy scroll (well GMS prescription for Melatonin liquid) I have previously bought Melatonin over the internet and given it in small doses but that obviously didn't have the desired effect. The paediatrician gave me clear instructions and the dose she recommended is far greater that the amount I had been giving her. So fingers crossed everyone... If it does the job you will probably hear the squeals of delight coming from me in the morning :)

Watch this space.... but if you hear snoring, wake me at your own peril hehe...

7 things about me...

2010-01-20T13:05:00.000-08:00

Everyone has done their list of seven things that you may not know about them and I have really enjoyed reading all the facts. To be honest, I was very surprised by some of the things I read and completely bowled over by the situations some of the girls had to endure over the years. Some of the stories made me laugh out loud and my nasal passages had tea spurt out on occasion... I do feel though, that reading the girls blog posts has made me think about my own life and how little I have done in comparison. I had my children quite young so never travelled, I certainly never carved out a career for myself, however, I have three very big achievements that call me Mam/Mum/Mummy/Mom/Hey you..... I will endeavour to follow suit and tell you 7 things about myself though as the others have all done so.

1. I have been married twice. My first marriage was when I was 23 years old and to a Londoner. We had two children and our marriage only lasted 16 months, however we had been together for a few years before we wed. My second husband I met on the Internet and we had a whirlwind relationship and married 21 months after we met. This union only lasted 18 months. Today would have been our 4th wedding anniversary but as I never get to the second, I have no idea what it should be.. paper/rock.... scissors?? Contrary to popular opinion, I do NOT have a patio, even if I joke about it regularly ;)

2. I am originally from Dublin, lived in Dundrum for the first 32 years of my life before moving to the country. I was asked recently by Hammie, how come I have a strong Wexford accent.... I still haven't managed to find an audio clip of what a Wexford accent is to play to her, but no.. I don't have the accent! When I lived in Dublin, I had a wall at the front of my house where the local teenagers congregated all day and for much of the night. They drove me insane as used to play football using the trees in front of my living room window as goalposts. After a few years of asking them not to play there, and begging them to stop walking on my wall as it was getting loose and the brickwork was wobbly, I snapped. I took a sledgehammer to the wall in front of them earning the nickname "Psycho Bitch from Nr. 1"....

3. I worked in administration for a chemical engineering company for the best part of twelve years while living in Dublin. I hated my job but every time I quit, they offered it back to me with higher wages, more holidays and flexible hours! I kept going back but eventually went part time for them to work around the children's needs. I also did painting and decorating at weekends when The Gruesome Twosome were at their fathers house. I used to take in foreign students all summer to compensate for working less in the office, along with childminding and would do data input at night to make ends meet. During school term, I would work in the office in the mornings and do afterschool care. I loved being there to collect the kids from school, but it was hard.

4. I was relentlessly bullied for the first three years of secondary school. I hated going and became withdrawn. My mother used to have to chase me down the road in the mornings to beg me to brush my hair and make an effort with my appearance. I had buck teeth and braces. To this day, I still have a massive inferiority complex and struggle with my demons. Even when meeting up with people I consider friends, I get very nervous, although on the outside I try hard to appear confident and intelligent. I always feel as if I'm playing at life, that it's not real, and some day my "fraud" will be found out. Silly I know, and a demon I'm trying hard to slay...

5. I only started driving when I was 25. My father and mother bought me my first little car, a Ford Fiesta and I loved it. Overconfidence led me to attempt to drive to Arklow four weeks after I got it and I crashed, totalling the car with Yani in the back seat. No one was badly hurt but my bonnet ended up where my windscreen should have been and I was badly shaken. I still get nervous now when driving a route that's not familiar to me and I won't drive in the City. I do however, suffer road rage and after someone tailgated me for a few miles once, got out of the car at the traffic lights, opened the boot and roared at him "would you like to get IN"...

6. I have been a "Gold Member" in WeightWatchers three times. In total, I have lost 10 stone over the years (not all in one go!) and put it all back on each time. I swing from a size 8-18 like a yoyo. I developed an eating disorder in my late twenties and used to eat laxatives as if they were sweets. I went to the doctor for help after a particularly embarrassing event which I won't go into detail about here...

7. Last but not least, I am terrified of wasps and bees. When I was younger, I got stung and had a bad allergic reaction to it. I have been known to get out of a car because of a wasp flying in... This also extends to a fear of all flying insects, including mosquitoes. I tortured my partner and the older two on holidays in Turkey once as wouldn't let them open the windows in the apartment and we had no aircon... I didn't trust the plug in devices, the sprays, or the electronic mosquito repellent I had brought... so we sweltered for two weeks!

The end of a chapter...

2010-01-14T11:58:00.000-08:00

I'm quite sad tonight... Today, Munchkins tutor broke the news to me that she was leaving in a few weeks time as has been offered a teaching job in her home county and would be starting after the half term. I know how much she is going to be missed, not only by Munchkin, but by our entire family.

When you take on a home tutor, you are not just employing someone to work some hours with your child. They have to be someone you are comfortable sharing your home with as they become an integral part of your extended family. Ursula quickly put all of us at our ease and there were never moments of awkwardness or feeling as if we had to get out of the way while she worked. I think if I was to describe her with two words, it would be "human dynamo!"

Having a tutor that you trust and know cares about your child and not just the paycheck is something more valuable than gold dust. Watching the two of them work together has been amazing and I'm grateful for the months of work she has done with Munchkin. The transformation in that time has been incredible. I know that a huge amount of work and teaching was done before Ursula joined us, but I had burnt out to a degree, and it was lovely to let someone else "take over" and push the program forward. She has a fantastic manner when it comes to teaching and Munchkin responds brilliantly with her and has blossomed and thrived. The children she will be teaching when she goes to her new position will love her as much as my little madam does. I know that I will smile and remember her when my minx comes out with a little Tipperary accent at times, as she has picked up the accent when it comes to a few of the words she says...

I'm happy that Ursula has found a great job and can move back close to her family, and even though I'm sad she's leaving, I know that the foundations she set while she was here are going to stand to good stead and has given Munchkin a great boost, so I'm not worried for the future.

There's no metaphor like a snow metaphor....

2010-01-06T03:00:00.001-08:00

I'm snowed in again and starting to feel the frustration at not being able to do everyday tasks like shopping... I know if I could just get to the main road, that there is a remote chance the council have it gritted and I could get into town to restock the cupboards!

As I was lying awake in the small hours, it occurred to me how the situation could be applied to the communication difficulties our children have. We are happy and comfortable in our warm house on the top of the hill. Everything we need is to hand, there is food in the fridge, and some oil in the tank so we are pretty self sufficient. The views are spectacular and apart from a little cabin fever, we are ticking along nicely. However, when the food runs out and the heating isn't working, we are going to find we need to reconnect with the outside world... Herein lies the problem. We know what we need but there is a huge obstacle in the way. Knowing where you need to go, or what you want is one thing, but getting it is another.

Whereas some people are equipped with a 4x4 jeep or snow chains, our children have the equivalent of a Mini with slightly balding tyres so the trip down the snow covered ice impacted hill is a more daunting prospect. Not impossible, but is going to take a lot more planning and a generous dollop of caution. With love and intervention, we throw a bit of sand down so the tyres can take hold and get them moving. A bit more sand, help with the steering and the occasional push and the main road is in sight...

At times we question whether its fair or not to force our kids out of the house and into the snow to get them where they need to go. Jeanie from PlanetOutreach-ASD wrote a thought provoking post on this recently and combined with the comments on the blog, it made for great reading. The general consensus is that while it seems a little unfair at the time, as our kids get older, we want them to reach the gritted road and what lies beyond. Whether they need us to steer the Mini and throw sand under the wheel for as long as it takes, or they manage to get their own 4x4 is fine by us.

Poetry amongst the dust bunnies....

2010-01-02T10:05:00.000-08:00

I've been confined to the house since New Year due to lack of gritting on the roads here around me so cabin fever set in and I did what I haven't done in over a year... I had a good clear out of the bits of paper, junk and clutter that seems to magically accumulate over time. I am fascinated how much we hold onto in the chance that someday, we might just use it. Today I was ruthless and decided that the binmen will earn their wages well when they can get the lorry back up the ice impacted hill I live on.

For hours, I sorted and created piles of stuff for binning or recycling (or just putting back where it belonged!) I'm ashamed to say that my inner sloth must have been residing in the utility as there was paperwork dated 07 and clothes that Munchkin couldn't possibly squeeze into pushed into bags which I had intended "putting away later"... Its cathartic when you finish and see the results of your efforts. Where others had to entertain bored children, I found a little silver lining to our ASD cloud... I was free to attack the clutter and Munchkin played happily by herself in her playroom (I now have to do a clear up job in there, but hey, the kitchen and utility look GREAT!)

While clearing a shelf in the kitchen, I came across a poem that had been copied and given to me just after Munchkin was diagnosed, and I smiled as I read the words printed in front of me. It was written by R.S. Thomas and would like to share it with you here.

Children's Song

We live in our own world,
A world that is too small
For you to stoop and enter
Even on hands and knees,
The adult subterfuge.
And though you probe and pry
With analytic eye,
And eavesdrop all our talk
With an amused look,
You cannot find the centre
Where we dance, where we play,
Where life is still asleep
Under the closed flower,
Under the smooth shell
Of eggs in the cupped nest
That mock the faded blue
Of your remoter heaven.

I just love the way he portrays the innocence of children, untarnished by the world. I like to believe that its not a world children are trapped in, rather a pure beautiful place that they can seek sanctuary in, as all children do before the harsh realities of growing up change that world to an adult world, with cynicism, responsibilities and stress.

A Rose by Any Other Name...

2009-12-29T05:18:00.000-08:00

I'm struggling a lot lately, having to keep explaining the need for labels for my children. Its got to the point where I'm almost starting to believe the people who think I'm looking for things to be wrong, almost "wanting" there to be something there so I can slap a label on my child... It couldn't be further from the truth though. Of course I don't want there to be any reason for my child to be diagnosed with anything else, but in my heart I know that we haven't got to the bottom of my middle child's issues. Therefore, I will don my elephant hide and get her the private help she needs and if that gets her an additional label to wear, so be it.

Trying to explain the need for a label is exhausting. A simple analogy I use is that you have a cupboard full of cans, all with the labels missing. You try to figure out whats in there perhaps by seeing how heavy it is, does it slosh when its shaken, or is it solid. You can really only find out a tiny bit about the contents of that aluminium can without its label... Now stick a label on the can. Whats changed? The can is the same, the contents haven't changed one iota. All that has changed is now we can easily identify what is inside that can without the need to guess or shake it.

So that is the purpose of the label. To identify what is there. Its not a name, or a tattoo that has to be worn on the forehead of your child, but it is essential to get services and the help your child needs and deserves. Don't forget also that labels peel off and can be changed as appropriate if things change.

So where is the real issue that some have with the label? I feel its the stigma of old. Sure don't people label themselves all the time if its something they are proud of? MD, BA, Mrs, Sir, Lord.... So why not come out and say the real reason they don't like certain labels. Yeah, its the stigma, I don't want people knowing there is any mental illness/neurological disorders/disability (delete as appropriate) in our family... Ignoring and shunning the label however, won't change that or make the child neurotypical. It will just deny them services and help.

Munchkin got her label nearly a year and a half ago and in that time has obtained intensive intervention, home tuition and a place in a special needs preschool. Add that to the help she gets from us at home too and you see a totally different child to the one who presented a year ago. As my mum said to me over Christmas, whatever you're doing, keep doing it! She is doing fantastically and I know in my heart, that without the label we wouldn't be doing as well as we are. I just need to sort out my cans in my cupboard and get my middle can relabelled properly so that she too, can move forward....

Tayto Louboutins... Imagine That!

2009-12-16T07:51:00.000-08:00

Imagination... its something that has been said is lacking in our children but is something that I have noticed Munchkin does have. Perhaps the countless hours of play therapy I did with her from pre diagnosis days has paid off. It is still something that the SLT said was a problem at her last assessment as she doesn't appropriately play with the toys, ie. she can spend ages setting out a play tea set, but doesn't pretend to feed dolls etc... when she is given toys at SLT she will organise them, tell you what they are, set them out etc., but peers her age will apparently play with them differently. She has an interest in toys and has for a long time, but her attention span can be compared to a goldfish with Alzheimer's at times, preferring to flit from activity to activity, leaving a trail of scattered toys and objects in her path... But she does like toys.

From an early age, Munchkin developed a passion for jigsaws. Strangely though, she never liked to look at the box to see what she was supposed to be making, preferring to work out the picture herself. It was the one thing that could keep her attention for prolonged periods. We started with the usual 2 piece ones and now at 3years and 3months of age, she will happily do 35 piece puzzles. The smaller ones she has now started doing upside down. We have a shelf full of boxes and bags of jigsaws in the kitchen, where if the opportunity arises, she will scale the counter to reach them! Unfortunately, we have a jigsaw munching dog who likes to chew them up so most of our puzzles are missing a piece or if the dog was in a particularly funny humour... the box!

Her love of jigsaws is so strong, that when introduced to them on the computer, mastered the art of dragging and dropping with the mouse to complete them... Only yesterday, when the mouse was missing, she figured out how to use the touch pad on the laptop! She never ceases to amaze me...

When I look at her playing these days, I see a little girls imagination growing and developing. I listen to her "talking" for her toys and realise that she is acting out scenes which she sees at home. I just hope she doesn't act out the fights the Gruesome Twosome have, as social services will be down to check us out ha ha. Can imagination be learned? I'm pretty sure I never taught her to put empty crisp packets on her feet like she did earlier. When I asked what she was doing, she replied "like a shoe." I know that it wasn't what I asked but was blown away by her imagination...

It's beginning to look a lot like Christmas...

2009-12-07T08:09:00.000-08:00

Every year, about a week before Christmas, I drag the tree from the attic and reluctantly chuck a few decorations in the general vicinity of the branches, wrap a few lights around the tree (even the ones that half the bulbs don't work) and say job done... You see, I am convinced that I am a direct descendant of the Grinch and quite possibly a distant relative of Ebenezer Scrooge...

I HATE Christmas, the mad frenzy of shoppers making incredible dents into their already screaming overdrafts for the sake of one day. I'm pretty sure the Three Wise Men didn't have an exorbitant Mastercard bill to pay off when Mary and Joseph trundled off on their donkey with the gifts they were given for their newborn baby...

Mr Hammie recently guest blogged on Hammiesblog that Christmas for them this year had been cancelled in favour of a walk in the forest and an avoidance of all the stresses that family gatherings can bring. I found myself wishing I could do the same as it seemed pointless to go through all the rituals and stresses of church, dinner, presents that no one can afford and entertaining Munchkin, hoping that she will smile and be nice to my elderly grand aunt and grand uncle who adore kids, but may not understand Munchkin ignoring them or pushing them away! Then something incredible happened....

I recently set up a sensory room for Munchkin complete with lights, projectors etc and she adores spending time there, so when I drove to a family I work with one night, she saw houses lit up for Xmas (yes it was November!) and that started her off asking for lights... The tutors, myself and her school have been able to use her obsession with lights to talk about Christmas to prepare her for it. I would hear several dozen times a day her say to herself " I want the lights...it's too early for the lights" over and over...

On Saturday, I decided to bin my Black Bah Humbug Santa hat and drag the tree from the attic several weeks before its usual appearance. I actually discovered a few years back that I can drag it up intact through the loft door so don't have to disassemble it (yes I'm that lazy!) and put the boxes of decorations open on the floor. Nothing happened at first then as I started to put a few old pasta angels that the Elder Lemon and Yani had made years ago in primary school, Munchkin picked up a decoration and started to help :) My heart burst with love right there looking at my little girl putting decoration after decoration excitedly onto the tree (all on one branch but hey, who cares hehe) I started to feel a little tingle of something that has been missing from Christmas since the older two hit the teenage years... I felt the magic!! I really thought this year the silly season would once again float over madams head but she has tentatively grasped the concept that Santa is coming and will bring her a present (thanks to www.portablenorthpole.tv) Now I just have to explain every day that its not actually Christmas yet, and that Santa doesn't get stuck in every chimney like he does in the book in school...

I wonder will I start humming the Coke ad.....

Laughter is indeed the best medicine :)

2009-12-01T16:03:00.000-08:00

Recession, budget cuts, job losses and illness were pushed back into the far recesses of our brains last Saturday night as once again, the Facebook Family headed out for a night on the tiles. We had had one night out previously last September which was such a success that another Autie Mom Andra, decided to take the reigns and plan a Christmas party to remember. And remember it we will!

A group of us headed out to the Laughter Lounge on the quays in Dublin for one of their party nights. We had come from all ends of the country, from Sligo, Donegal, Wexford, Cork, Kerry, Monaghan and so on... We were promised laughs and they didn't fail to deliver... Two comedians with sharp wit and the gift of the gab entertained us til we laughed our cotton socks off. At one stage, I feared that I couldn't breathe with the guffaws that were bellowing out past my lips! We sipped cocktails, amongst various other liquid delights that helped us to shed our inhibitions and dance the night away after the show had finished. Regardless of age or gender, our fabulous facebook friends boogied away with jaws sore from laughter and a smile on our faces as we put all other worries aside for the night that was in it. Laughter is indeed a wonderful medicine...

With all that we deal with on a day to day basis, the challenges we face when fighting for services for our children, the endless calls and paperwork we must fill out, it is quite easy to become overwhelmed and slip into depression as we forget to take care of our own mental health. That is why having an online community of friends is so important to help lift us up when we feel down, and to offer support when we need it. Meeting up for coffee occasionally and a night out every so often helps to cement those relationships that have developed. Laughing a night away with people that you have grown to respect and consider true friends is the ultimate therapy session! There are times however, where professional councillors can be the best option, if life has become so complicated and dragged you down so far that you feel there are things you can't talk about openly. Sometimes you need the anonymity of a stranger who is qualified and discreet enough to help you sort through your problems. This is where Solas comes in. I have copied and am pasting a section from the IAA blog regarding this...

Just wanted to make you aware that we now have additional counsellors providing the service at Solas, with availability during weekday evenings. Katie and Paula have joined us this month and I'd like to welcome them aboard.

If you, or someone close to you, would like to avail of counselling/personal therapy service you are welcome to do so.

Just drop a note to counselling@autismireland.ie and we'll put you in touch.
All the best, Yvonne and The Solas Team

Some friends just suck!

2009-11-23T13:27:00.000-08:00

Munchkin made a friend this week... She has spent countless hours talking to her friend, sitting in her sensory room with her and will even kiss and hug her goodnight. I should be delighted but... Its a vacuum cleaner! Her new friend is called Hetty and is a close relative to Henry! I can't believe the budding relationship between the two of them and am at a loss when she will kiss and hug her new buddy goodnight but will still reject her own brother and sister and have a mini meltdown if one of them even attempts to get close enough for a kiss or hug when she's heading up to bed.

Its not the first strange obsession she's had over the years. One of her first loves and still a strong contender is stones. All types, pebbles, gravel, big ones and little ones, she loves them all. She would spend countless hours playing with the stones she could take from the plant pot in my landing and would walk around with a select few in her hands. Every time I would bring her to my friends house, she would go to their modern electric fire and take out all the firestones to line them up in order of size and shade. Her husband could always tell when Munchkin had been for a visit as they would be lined up on the hearth and the plant pots would be rummaged through as they had a lovely layer of pebbles on top of the compost... (she would also have eaten some clay and compost but that's another story!)

A relatively new one, along with the hoover, is a preoccupation with clocks, timers and buttons. She seems fascinated but almost anxious with the timer we introduced in her home program, so much so that we replaced it with a visual egg timer. She now notices clocks everywhere she goes and only this weekend while at the swimming pool noticed the clock on the wall. When she is prompted to talk about swimming now, all she will say is "clock at the swimming pool". I'm uncertain how to stop her preoccupation with this though... An easier one to deal with is her wanting to lick the buttons on the television remote... I can take it from her and show her how to use it appropriately! She has only very recently learned to put her tongue past her lips so have caught her licking a variety of things but she seems to favour the remote and the telephone. I understand this is because the tongue is an extremely sensitive organ and it is something babies do to learn about their environment, however I will try to encourage her to only do this in her own home for the time being as some people may not appreciate their possessions being slobbered over!

I will watch the developing relationship between vacuum cleaner and my little girl and decide how best to use this in a positive way (hey, anything that encourages language is good no?) or as one of my facebook buddies said, "switch it on and let her drag it around with her... at least the floors will be clean!"

Even masks have to come off to blow your nose...

2009-11-15T07:38:00.000-08:00

The one thing that parents of children with special need are experts at is putting on a brave face. No matter how difficult you are finding things to cope with, its like the glasses you take from the bedside locker each morning, part of your daily ritual. Get up, shower, and put the impenetrable mask on that few are privy to see behind. It is almost as if we admit to others that we are finding it hard to cope, the reality will hit the person we least want to admit it to... ourselves.

I had a meltdown this weekend while visiting my family. I had spent a particularly lovely morning with my Facebook friends, enjoying coffee and chat, and even got to meet the hairier members of the group in the form of Jules and Dusty the assistance dogs. These girls are the ones we allow to see past our shields, the ones who know that struggle to keep our emotions in check and understand why we feel the need to bury them at times.

Stress is something that can build slowly over time too... I like to think of it as my own personal pressure cooker... Lets start with that ingredient ADD, yep can cope with that, throw in a bit of Aspergers, yep still coping, add some more ADD, a pinch of OCD, a smidgen of anxiety, wow.. still managing! Wow, this recipe is shaping to be an interesting mix... Add in a handful of divorce, a dash of depression, a HT program, dealing with the authorities and the powers that be, fill in some paperwork, chase and make phonecalls... yep the pressure is building now but if I only take a little bite at a time I'm managing to keep the meal I'm making down. Stick the lid on, turn up the heat and like a pressure cooker, let a little steam out through a safety valve (my own safety valve is my facebook friends, who get the steam blown their direction and who help me diffuse it before it fogs up my glasses!) Then something unexpected happens and it might seem the most insignificant thing in comparison to the other ingredients in the pot and the valve bursts off spraying the ceiling with the contents of the previously controlled chamber...

This is what happened this weekend... Being slightly oversensitive and a tad over reactive, I perceived advice as a lecture instead of remembering that the person who had offered it only has my best interests at heart. This person loves me unconditionally, has always been there to catch me when I fall (which I have plenty over the years) and has only ever wanted me to be happy. Its my fault that I keep my mask in place and don't want them to see when I'm not coping and stressed. I dropped my mask and dissolved in floods of tears. Ok that last bit sounds like tears rolled gently down my cheeks where in reality, I'm not the prettiest cryer. My face was one only a mother could love, crumpled, red, bloated and there were plenty of tears and snot involved (thanks Dad for the kleenex). I opened up my fears to them and they all spilled out mixed together and jumbled up. I'm sure that it must have been difficult to decipher half of what I was crying about through the wails and tears.

What I have to try to remember to do is not to keep the mask in place with the people who love me most. To allow others in, to help before the pressure pot builds to that point again. I'm sorry now that I hid my stress levels from the person who loves my kids as much as I do. I think a lot of us do that to protect our families and loved ones from having to worry about us. For now, I can put my mask back in place and carry on with the daily grind of appointments and paperwork etc, but I will be asking for help when I need it.

For Mum xxx

A Book with a Bright Pink Cover?

2009-11-08T12:42:00.000-08:00

Just over a week ago, I did something I had wanted to do for a long time... I dyed my hair pink! Not all of it, but huge big chunks of it. I'm not talking subtle pastel coloured pink either... Bright, bold magenta. I then waited for the comments to roll in. You see, I'm not totally bonkers, there was an ulterior motive to doing this to my crowning glory. It was a great social experiment to see how others perceptions of me changed, just by changing the colour of my hair. With human nature, people will evaluate others within seconds of meeting them, by the style of their clothes, the way they talk, look, and smell even, and will form an almost instant opinion of what that person is like. It is a self preservation and protection mechanism inbuilt into us to gauge what threat may lie with this individual and if a threat is perceived to protect our children and those close to us.

I was amazed how quickly attitudes changed to me. Not by those who know me well, in fact some of them were very quick off the mark to realise that I had another reason for doing this, but by virtual strangers who may have felt they knew a little about me, but not too much. People all of a sudden felt as if they had a right to pass comment, and to judge my choice. Marks were overstepped on several occasions where very personal comments were passed on my physical attractiveness... Assumptions were made by strangers and I was watched closer by security guards in shops. On the other hand, a lot more people felt free to start conversations with me, using my hair as an opener for discussion. I had teenage girls stop to tell me how much they liked my hair and strangers smile at me for no other reason than to just smile and nod.

We are led by all our senses, not just the visual sense. We judge others by how they talk, what accent they have, where they come from.. We assume for example, that old men with rough hands and skin were manual workers... We believe that when someone is slurring their voices that they are drunk... Not all of these things are necessarily true, but it doesn't stop our instant evaluation of that individual. Munchkin talks with an English accent at times as can a lot of children with aspergers. I joked with a friend on a night out that they must have been drunk as they were a little unsteady on their feet only to be told of the brain tumour they once had. How small I felt suddenly... I have another friend who has epilepsy, and when she's tired her voice slurs... she has never taken a drink in her life. This is where I have my own lesson to learn, not to judge the book by the cover until I have read the contents.

What has this got to do with my experiences with autism I hear you ask. Almost as many assumptions are made of our children. How many times have you heard "well he/she LOOKS normal..." People assume that because our kiddies may not have a visible disability, that their behaviour is down to bad parenting, or that the child needs more discipline. How many looks have you had when at the supermarket? I have had many moment of people tutting when Munchkin has a meltdown in the middle of the shopping aisles. We have had people look and not try to hide their disgust at the "naughty" child! People have actually passed comment to me before that "children were better behaved when you could slap them" implying that Munchkin just needed a good clip around the ear to stop the tantrum. Sometimes I explain, but there are times I'm glad I've have a Nelly like hide which is virtually impenetrable!

The other comment I get a lot is "but she can talk" as if that is all that autism means. I have had to explain the difference on many occasion between speech and communication. Munchkin has great speech now thanks to a lot of hard work by her very good tutors, teachers and school and her siblings. She is not conversational but her comprehension is improving at a great rate. With a good home program in place and a lot of patience, her communication deficits are decreasing. Her aspergers and my hair have that in common, permanent but with a lot of treatment will fade, however my hair will "grow out" but her aspergers is what makes her who she is and I don't think I would like to remove all traces of it. Shes my quirky little madam who doesn't care what colour mummys hair is... In fact she paid no heed to the change whatsoever!

L is for Lemons...

2009-11-01T07:26:00.000-08:00

A few nights ago, a fellow Facebooker came online looking for support and advice as a realisation hit her full force and with no warning when putting her little boy to bed. She did the usual nighttime routine but this time, when she said I love you, he answered A is for Annie Apple... The sudden awareness that all her sons responses were rote hit her in the heart like a sledgehammer and left her wondering if her little boy could truly feel love at all... Within minutes of her posting, the troops rallied and everyone was there to help her through this time. Its something that has passed through all our minds when we wonder about our little ones and their problems with empathy and understanding emotions and feelings. The one consistent response that was posted was that our little ones may have trouble articulating their feelings but they certainly do FEEL them. When Munchkin is hurt, or hungry, or scared it's me she looks for... when she's tired and wants snuggles, no one else will do the job quite as good as Mummy. When she has a bad dream and wakes terrified in the night, the scream is for me to come get her and then she curls up so tightly in my arms for the rest of the night. Its times like these I KNOW she loves me. She doesn't have to say the words, she shows me. She will repeat "I love you" if I ask her but she's just as likely to reply to the question of who she loves with "I love Mummys phone!"

I do often wonder about her interpretation of feelings when I'm trying to teach her emotions and the correct response to have when another child has hurt themselves, or is happy, or angry... Her lack of empathy is a problem at times as if one of her peers was to fall and hurt themselves badly, her reaction is to laugh. The comical aspect of someone tripping makes us laugh and is quite typical, and lets face it, we all have a chuckle when someone falls over. The realisation however that the person had injured themselves would immediately trigger empathy in us and we would stop laughing and show and feel concern. Munchkin just continues laughing. This is something that will have to be addressed and taught in her home program as it's just one typical example of where our little ones will have problems if mainstreaming.

My mother asked me recently if Munchkin will ever FEEL empathy, or will it always be a rote response to a situation. I can only answer I don't know to this question, but I like to believe that she will learn empathy and relate those feeling to her own but it's going to take time. It will only be through feeling emotions herself and being reminded when teaching her to generalise that it may register with her. This isn't something that's going to happen overnight like an epiphany, but a long haul process...

The Gruesome Twosome (Elder Lemon and Yani) returned on Friday after spending a week in London with their father and his wife and kids. They have a little brother who is five and a little sister who will be 3 next February. It was an eyeopener for both of them spending time with NT kiddies and they were a little subdued when they came home... They opened up about their feelings to me and told me of the sadness they were feeling as they had their own penny dropping moments as they watched their youngest sister over the week chatting away to everyone and having conversations. They had a dose of "normal" and it hit home strongly that Munchkins problems, even though she has come so far, are quite startling in comparison. They struggle to come to terms with the fact she won't cuddle them or let them kiss or hug her most of the time, and can feel quite rejected by her. They felt scared suddenly for her. After talking through our feelings and worries, they have accepted that to compare Munchkin to other children is unfair and a pointless exercise. Acceptance is the key to moving forward and I'm very proud of how my teenagers have talked things through and made their decisions to accept and support instead of feeling angry on their little sisters behalf. Life is chucking us lemons so we are just going to make some fabulous lemonade :) With love and understanding who knows what Munchkins capabilities and possibilities are...

For Ruthie xxx

Acknowledging your Inner Aspie

2009-10-26T15:15:00.000-07:00

Today I once again pondered then genetic links with ASD. Every once in a while, I peruse the genetic links and question where Munchkins particular brand of autism reared its head from. It would be very easy to lay the blame squarely on the shoulders of her blatantly aspie father, but I have to acknowledge my inner aspie too...

I have had numerous conversations with other parents of children on the spectrum and have come to the conclusion that we are all on the spectrum somewhere, with varying degrees of quirks and symptoms. Our children just have more quirks and difficulties that perhaps we as parents have.

As I sat driving up to see a friend this afternoon, I reached back several times with my hand to scratch the back of my neck and it was only when I went to rip the label off my new top, that I realised I have several tops at home with the signature two holes at the neck where I have yanked the label from the top when the sensation became intolerable and couldn't wait til I could delicately remove the offending fabric by unpicking the stitching... Ummm... interesting... I started to think deeper about what other quirks I might have.

One common trait that keeps emerging when talking to other parents is a resistance to change. We like to think that we are fine with it, but only over the weekend, Facebook changed its format once again and there was uproar about it! We don't like when we have to find our way again, we like consistency. Many of us found school years uncomfortable, felt out of place. We seem to have a routine of certain rituals we perform, from activities we do to the predictability of perhaps a Chinese on a Friday night. I personally cannot sit in the sitting room with the curtains all crooked or caught up behind the chair that sits at the window (my teenagers seem incapable of pulling them straight, preferring the yank and leave as it falls option), pictures not straight or a lack of symmetry can ruin my concentration until I am compelled to straighten the offending article... All of this though can been seen as typical behaviour. The one thing that makes me question my own aspieness though is my love of technology...

Is it normal for your pulse to quicken at the sight of a new brochure with electronic gadgetry advertised? I seriously feel my heart start to race as I step into a shop which stocks the latest gadgets and computers. I feel content stroking the keys of a computer keyboard and practically purr when taking a new object of my affection home... I HAVE to have the latest contraption that has been released, even if it means saving like crazy to get it. My favourite toy has to be the iphone, which fits perfectly in my hand, the sleek black casing smooth to the touch and the screen so sensitive you could almost blow on it to change page... What doesn't surprise me is that Munchkin seems to have inherited my obsession with all things electronic also, and would do any task set for 5 minutes on my iphone. What does surprise me is the ease in which she finds her way around the menus at her tender age. Her father also has an obsession with electronic gadgets so it makes sense that she has the love of them too... Apples and trees come to mind!

There was a great post recently on the Irish Autism Action Blog which included a link to online tests by Simon Baron-Cohen which would give you an indication of how strong your inner aspie actually is... Have a go and see how you score ;)

Was Mozart afraid of The Dryer Monster??

2009-10-21T14:49:00.000-07:00

Today I took Munchkin out for lunch with a friend and was very pleasantly surprised how our trip into town went. We even managed to squeeze a quick browse around a clothes shop without any major incidents. Munchkin happily stood peeling stickers off all the new lingerie that had been displayed while I tried on some coats beside her. I had to let go of her hand to take on and off the selected coats that I had dragged over to the bra and knickers and she was very content to stay put while I did my impromptu fittings. I decided on a lovely new grey jacket and that was placed into the basket alongside several candles, some underwear, a schoolbag and some Christmas cards that Munchkin had discretely swiped and placed there as we went through the aisles. We only had two incidents in the shop where she bolted so it was a good day to try for lunch out.

My friend and I decided on a lovely restaurant we know were there is seating under the stair area next to the bathrooms where Munchkin could be contained in a high chair with a harness and we settled ourselves down and waited patiently for the lasagne to be dropped down to us. All the time, Munchkin entertained herself nicely with the sugar sachets and other condiments... All going fabulously... She even ate some chunky chips (usually rejected as MaccyDees skinny fries are the acceptable ones...)

I decided then that I would take her to the bathroom as it had been a while since she had been and I didn't wish to be frantically trying to dry out a car seat! My guard must have been extremely relaxed as I went straight past the wheelchair accessible toilet I would normally have gone into with her and went to the ladies toilets instead. Whilst she sat on the toilet, another lady had finished her business and washed her hands.... oh no.... how could I have been so stupid?? As the hand dryer went off just outside the cubicle, Munchkin threw herself, terrified and semi naked into the safety of my arms, screeching, panic stricken with the widest eyes you could ever imagine... I should have known better as have had her climb onto my shoulders in a cubicle as she waited for me to finish on the toilet before when a dryer has gone off outside the door. Needless to say, I think a visit to that particular restaurant in the future will be doubtful as she will associate it not with the pleasant and relaxed lunch we had, but the "Dryer Monster" which is what I imagine she thinks it is.

The "Dryer Monster" is not uncommon I believe and have heard it attacks many children on the spectrum. It has been known to frequent all corners of the globe! It particularly likes those with sensitive hearing and is related to the ferocious "Hairdryer Monster"...

Sensory issues affect a huge number of children with autism. All the senses can be amplified beyond what we ourselves could tolerate. This was explained so eloquently by Hammie in her blog Hammiesblog

"Autism is a sensory disability in which everything your child sees, hears, feels, tastes and smells is distorted. They may see every strand of hair on your head individually with more detail than a Dandruff commercial, hence the need to push your hair off your face. They may taste food in individual components that make the slightest change to the recipe seem like an entirely different food. Touch can be too light to feel or too intense to bear, or both! And sound most unfortunately can be very distorted, either because they hear everything and cannot tune in to what’s important, ie. your voice, or because they only hear the higher sounds or the lower sounds that are in their environment."

I have been lucky that even without any official Occupational Therapy, my own home program that I implemented has been very successful in desensitising Munchkin to a lot of her sensitivities, touch especially was difficult for her, but now will actively seek contact with me. I have noticed however, that her sensitivity to noise seems to be increasing, not hugely, but is increasing. She will several times a day (well several is a bit of an understatement... several hundred times a day!) "Whats that noise...." It could be a clock ticking, or a washing machine in another room or the neighbours dog barking, or the wind blowing etc.... I've also noticed that she is getting more interested in musical notes, particularly mid range tones. While at my mothers house, she has a piano and unlike most children her age, she does not bang and clatter the keys, rather will press them gently, finding the notes that please her best. She does the usual press every key in sequence but then will place both hands palm down on the ivory keys and press several keys with each hand until she finds some that sound pleasing to her ear and holds them down as the notes resonate through her hands... Perhaps I have a budding pianist on my hands...

Just answer your name... please!

2009-10-13T14:02:00.001-07:00

People often comment these days how fast Munchkin responds to her name... this wasn't always the case. As with the majority of children on the autism spectrum, this was one of the first red flags that was raised with her. You could call and call her name to no response. I tried changing the tone and the pitch of my voice to grab her attention... zilch. I may as well have been talking to the kitchen wall (which I must admit, has had a fair bit of one way conversation over the years!)

I spent countless hours, days and weeks trying to teach my little girl her name, and to respond to it. All the usual tricks and lessons were tried... mirrors, photographs, videos etc and slowly she started to respond on occasion. Every night, our routine after dressing for bed, washing teeth and saying goodnight to her brother and sister we would stand in front of the bathroom mirror and I would say "Who's that?... Its Mummy"... and "Who's that?... Its Charlie." This was repeated every time we passed a mirror, or even just a shiny reflection in a window and I'm sure that I attracted strange looks from passersbys at times. Like so many other things I was trying to teach her, an opportunity to teach missed was an opportunity lost. Life was a series of prompts and knowing when to fade them out!

The day that sticks in my memory as a pivotal turning point, and making me realise that answering to her name was top of my priority list was the day she made my heart pound with terrorising fear. As with many children, my daughter is a descendant of Houdini... There is little that can contain her if she decides to escape. On many occasions, she has managed to give me the slip at home and I will find her testing windows and doors. From a very early age, she would scope a room as soon as we entered it, mentally clocking up the escape routes! Our home is typical of many families I know where it is under lockdown constantly. Doors and windows must be locked at all times, and I have constructed a "safe zone" at the rear of the house where there is a combination lock on the back gate so that I can at least boil a kettle without keeping her within my sights. I still don't trust her for a second as when she's a little older, she'll be up and over that fence before you can blink!

The day in question however, we were visiting a friend and her son. She also has a "safe area" at the back of her house as it's just been built, the acre of land its on has not been landscaped and backs out onto a main road. Her fences are slightly lower than mine so I was mindful of being on higher alert than usual. We locked the doors to all the rooms, only leaving the sitting room, a bedroom, the kitchen and play area accessible... The two kids were happily pottering around and keeping themselves occupied. Every few minutes we would check to make sure that they were ok and that Munchkin wasn't eating anything odd, like the charcoal from their fireplace...

I sat drinking a coffee and realised it was very quiet in the sitting room so went to check the kids. My friends son was sitting quietly watching television, but there was no sign of Munchkin. I checked the bedroom but she wasn't there. Out to the play area and once again it was empty. I started to get that panicky feeling in my chest. I ran back inside and started calling her name again.. over and over... My friend was searching in the bedroom, under the bed, in the wardrobe calling out constantly. I started shouting her name and checked the sitting room once again.. She was GONE!! Outside we ran, abandoning my friends newborn son on the kitchen floor tearing through the overgrown garden shouting, the fear evident in both our voices now. She ran down the lane towards the main road, while I headed to the back of the brush and the little gap in the hedgerow where cars were whizzing past. There was no sign of her at all. Tears were flowing now and it was all out panic stations. My mind went where no mothers mind should ever go and I ran back into the house, ready to call the Gardai (police). We did one more check of the house shouting frantically her name and there was no sound at all. Then, out of the corner of my eye, I saw something move in the corner of the sitting room.... I ran over and pulled the lid off this little plastic crate, barely big enough for a cat and there she was, all squashed in with the lid pulled over. I cried and shook with relief that she was safe and unharmed but I'll be honest, the shock of that day will stay with me for many years to come. THAT was the day that answering to her name became my primary focus.

Nowadays, as soon as I say her name, she replies quickly and firmly "yes!"

I have thought of this day a lot over the last week, especially in light of the story of Aisling Symes, the little angel whos parents have to deal with the overwhelming loss of their daughter. My thoughts are with them xxx

For Luke and Lucy :)

2009-10-04T10:59:00.000-07:00

Something amazing happened this week which has left my "Autie Family" on Facebook grinning like proverbial Cheshire cats... Since our very good and totally wonderful friend posted her news up on a status, we have all been walking around looking as if we have coathangers wedged in our mouths as we cannot stop smiling. There have been tears of joy, whoops of happiness and emotions running high in general. What could possibly have triggered this tidal wave of emotion....

Ok-wasn't sure whether to post this news.....
Yesterday, Thursday October 1st 09, Luke spoke 1st words, hes almost 10 and lost his speech at 15 months!!!! Never believed in miracles, but do now, its all down to such dedication of Lukes tutors...we had gi...ven up on speech, it used to be top of our wish list, but major toileting issues & understanding took over. Things just seem to have clicked with him now, we are so happy for Luke & very very proud.....and today more new words!!!!! His 1st word yesterday was an unprompted "BYE", in a very deep voice, amazing!!!!!

These words and the updates we have been receiving on his progress have given others renewed hope. He is the inspiration now for countless parents who despaired of ever hearing their loved one speak. Luke is responsible for many parents finding the strength and energy to carry on. I have never met him in person, but know his mother Lucy both online and in person. I met her through a special needs forum and she was my first facebook autie contact. Its not surprising to me that she has such an amazing son as she herself is an amazing woman with such strength and commitment to not only Luke, but to all her family. She has fundraised tirelessly for the Assistance Dog program, thrown herself off buildings (well absailed down them but to me its the same thing hehe), is always volunteering to sell pins, or lego blocks, or pack bags or whatever is needed to raise funds for services for our wonderful children. She has always been there to offer me words of support when I'm feeling low, or to celebrate with me when Munchkin achieves something. Thank you Lucy.... This astonishing and wonderful achievement of Lukes could not have happened to a more deserving person and I know that you will savour every word...

Even if we have given up hope at times, our children haven't :)

Where we are now....

2009-09-28T15:09:00.000-07:00

As I sat and perused Munchkins files tonight with a friend whose son has recently got a diagnosis of autism, I looked back with amazement at how far she has progressed. When I realised that a mere 11 months ago, she had a handful of rote phrases that she said such as "ready steady go" and "splish splash splosh" (from the Rubberdubbers), I had to re-read the questionnaire that I had for the psychology department as it seemed impossible to me that it had only been filled out last November... but indeed it had. The forms had been filled out and I had copied them as part of our Assessment of Need process which was supposed to have been completed within a six month time frame and a Statement of Need issued. In reality, it took sixteen months to complete, and we would probably still have been waiting if we hadn't been such a squeaky wheel! Looking at the forms reminded me that Munchkin had only just started to call me Mummy at that stage, at 2 years and 2 months of age (and what a feeling that was!).

We finally had our last link in the AoN process carried out ten days ago so apart from waiting for the Statement to be issued, its over! I was so nervous attending the psychology evaluation as was terrified of being made feel crazy as she has progressed so well now! The assessment took 2 hours to complete, and Munchkin was a complete angel during this time (no, I didn't give her Smarties washed down by Red Bull to show her at her worst hehe... it's just they are not on her list of accepted foods lol)...

I had heard a lot of negative comments regarding the psychologist that we were seeing so I had already formed an opinion of him before we even stepped into his office... I won't be so narrow minded and blinkered in future as I couldn't have been more wrong about him. Its indeed a lesson to reserve judgement until you have all the facts and not let yourself be swayed by others opinions. I found him to be friendly, open and approachable. He went through the complete cognitive set of puzzles, boards, books etc with Munchkin scoring her appropriately. She did try to control the sets but without much luck. At the end of the session, we talked for approximately half an hour and he concurred with the diagnosis the Professor had given her of Aspergers. Then he gave me the IQ scoring... 80-110 is considered in the normal range and she had scored 88, which meant she doesn't have what they class as a learning difficulty. It did surprise me somewhat that she hadn't scored in the higher end of the average range. I don't wish my child to have a "gift" either so I don't know why exactly my gut was squeezed a little... She doesn't care what her IQ is so it must be my own ego that was disappointed and I remind myself that it shouldn't matter anyway! (silly vain egotism go annoy someone else...) T'is only a number!

She has settled remarkably well into her new preschool and I am delighted with how much she loves going in every morning. There is a lead teacher and 3 snas in the class with 7 children so she's getting lots of attention and learning well. It is a mixed group of special needs children with intellectual or physical disability and she's mixing well with them all. A few transitioning problems and her staying on task needs a lot of work as she can't be Cyclone Munchkin whilst there and must participate with group circle time etc. They have yet to get her to even try yogurt as its "sticky" but its early days yet so we'll keep at it. She's staying on longer on a Friday from now on as they do an eating plan with some of them so that will be good. Potty training has been a bit hit and miss over the last few days but we're getting there slowly...

On the Home Tuition front, we have finally ended the saga of the "missing SENO" (the one who decided in their infinite wisdom to release the forms for signing and go on holidays for 3 weeks a couple of days later, leaving lots of families in limbo!). After squeaking a lot and become a regular pest, the Senior Seno finally organised someone to sign Munchkins forms so I could get them to the DOES. With a couple of dozen more calls to them... the hours were sanctioned :) Then then next paragraph... tutor only sanctioned til Oct 31st as not meeting the full qualifications of the department..... OMG she has a psychology degree, years of teaching experience etc... But no, they want me to find a primary school teacher who may or may not have experience with children on the spectrum! Muppets!! I once again start the next round of "satisfy the dept" by looking for a suitable tutor. Then I found one! I think I must be a cat as fell on my feet this time. She's the teacher in an ABA unit and highly experienced. We arranged to meet for a chat and I found her to be extremely capable, friendly and thought she's exactly what Munchkin needs. She started today and immediately Munchkin accepted her, played with her and liked her. I feel that she liked Munchkin too so hopefully, and fingers
crossed, its going to work well :)

I can allow myself a little breather for a few days now before the bedlam starts all over again :)

A Night to Remember...

2009-09-22T05:29:00.000-07:00

The end of September is closing in fast and I haven't given the blog as much attention this month as I should have as have been preoccupied with arrangements for school, games such as "Hunt the SENO" and "Pin the reports on the DOES"... There was also the run up last minute arrangements for the first "Facebook Autie Parent Night Away" that was held last Saturday night in a Temple Bar hotel where almost 50 parents managed the difficult feat of arranging childcare and spending the night in the very good company of other parents who understand our kiddies needs. I blogged here about the importance of having friend who "get it" and was delighted to meet so many of the friends I have made online last Saturday.

It was an incredible experience to talk to so many who share a common bond. Our stories and experiences may differ but over dinner, and late into the evening, there was laughter and smiles while we exchanged stories and gave and received advice from all there. As one mother posted up on Facebook the next day, it was liberating to laugh about and talk about things as diverse as "poos in the swimming pool" and other such quirky things our kids get up to :) There is already talk of another get together before Christmas and I for one can't wait!

The other effect a night away had on my life is that my family have a greater understanding of Munchkins needs now. My mother and father had her overnight, and where they may not have really seen the communication deficit very clearly before, they now can be added to my list of people who "get it". You don't realise how much you fill in for your child and translate their body language etc until you are not there and the communication breaks down. I am so grateful for having family that are supportive both physically and emotionally, but even more so now that they have a greater appreciation of what my little girls difficulties are. It saddens me greatly that there are so many girls I talk to online that lack this type of support as may be living a distance from their families. We have all found each other to watch our backs and give support to one another but how many others are out there with no lifeline to cling to when times get tough? If you know someone in your community that may need help, reach out and let them know they are not alone. You may not be able to offer physical support but emotional support is equally (if not more) important.

Tiaras Tears and Tantrums...

2009-09-12T14:31:00.000-07:00

Today I took Munchkin to have some passport pictures taken... What should have been a simple task turned into a monumental task of epic proportions to cajole a completely reluctant Munchkin to even look towards the camera never mind get one that would meet the strict passport criteria! Thankfully it didn't need to be perfect as was just for school purposes but I really didn't want to send in a picture of a wailing, red cheeked tear stained child to have on permanent record!

I have used the chemist before to have a passport picture taken of the little boy I worked with previously. That was also a challenge as was for an actual passport and he didn't want to play ball either. I knew this was the place to go to as the staff working there have the patience of Job when it comes to getting an acceptable picture. Today, they would need it. After 10 minutes of Munchkin not complying, whinging, me bribing her etc etc... I decided she needed to have a break to calm down and I took her away to have some juice and a biscuit in a nearby quiet cafe. When her face had returned to a normal colour and not some shade of crimson or scarlet, I returned to the chemist and told them "be ready"... He took out the camera, I placed Munchkin in front of the white screen and then I proceeded to leap around like an idiot, singing in an operatic Miss Piggy voice and then the impossible happened... she smiled! SNAP picture taken and job done. I didn't care at that time that I had attracted an audience who thought I had escaped from the local asylum.

I should have called it a day after getting that first task marked off my to-do-list but I foolhardily plowed on with my next mission... getting some new shoes for her. I won't go into details but it involved me walking out with her new shoes in a bag, her barefoot and having a mini meltdown...

You would think then I'd go home? No, not me. Being a total glutton for punishment I headed to the local supermarket as needed to collect her birthday cake for her party tomorrow. I think it was total sensory overload for her at that stage as the manager ended up coming over to see if he could assist us at the checkout as she was in total meltdown at that stage. Her big sister was mortified with her behaviour at this time so we just rushed through, shoving the purchases higgeldy piggeldy into bags. All the time, the manager was trying to talk to Munchkin about Santa not coming to naughty girls and for once, I didn't bother trying to explain her aspergers, I just adopted her attitude and decided to blank him too...

My little princess is fast asleep now and I just looked in on her and smiled at how beautiful and lovely she is. Days like today are not too often and the lesson I have learned is to not leave everything on the long finger til I have to do it all on the one day. I didn't prepare her for what we were doing today either so I only have myself to blame when it all goes wrong!

"What... you want me to eat that??"

2009-09-01T14:19:00.000-07:00

Every day, I sit and wonder what I'm going to cook up for Munchkin for her breakfast, lunch and dinner. I think about what stains least when it's spat back at me. I ponder the thoughts of just giving her biscuits and her milk for an easier life... but the responsible parent deep within me knows I must at least attempt to get her to eat something slightly more nutritious than a box of Maccy Dees fries and burger meat (no buns, no sauce and definitely no pickle!!)

I'm not alone in this curious battle to get my little girl to eat. A huge percentage of children on the spectrum have issues when it come to foods and what they will accept on their plates. When Yani was little, she was an atrocious eater and I looked for help from my GP who said to me at the time "no child will willingly let themselves starve to death." I do believe though, that I have met some girls who's children would rather starve than eat what is presented to them.

Munchkins food issues started very early on, even when feeding her myself, she wouldn't let me hold her close, preferring me to lie her on the bed beside me and would only take a small amount at each feed. When I returned to work and my friend was minding her, she point blank refused to feed from the bottle and my friend frantically was dripping milk into her mouth as was worried she'd dehydrate before I returned! When she was introduced to solid food, she would only eat pureed foods and would choke on lumps of any type. Forget about chewing...

Before diagnosis, I read up a lot about food issues as slowly but surely, more and more foods started dropping off her list of accepted foods. There was a definite problem that needed addressing fast. I had a feeding assessment done which I blogged about here, and that showed up that it was definitely a sensory problem she had rather than a behavioural one so the battle to introduce new foods began...

I read a fabulous book called "Can't Eat, Won't Eat.. Dietary Difficulties and Autism Spectrum Disorders" by Brenda Legge which explained very well to me the different issues our kids have when it comes to foods. I laughed out loud at one woman's description of variety in her child's dinner was if she was allowed to put the ketchup to the right of the nuggets and not the left! It is well worth a read and if you look at this link you can read the first few chapters and get a feel for the book.

For months and months, Munchkin would eat the same dinner every single night. Pasta with Bunalun Organic Tomato and Vegetable sauce... On the advice of the feeding therapist, I allowed her to have the same breakfast and dinner each day and only had to battle with her at lunchtime to at least try a new food. Using reinforcement and promise procedures it took a long time, but eventually I managed to get her to accept a few new foods. We now had pancakes, pasta, sauce, yogurt, fruitapura, crackers and salmon in her daily diet. I was delighted to have a variety of foods I could offer her (I know that a lot of readers would think there was a very limited range of foods there but considering some kids will only eat one or two types that was a lot!) Then disaster struck... she stopped accepting pasta and sauce at dinner and would nearly throw herself out of the highchair to get away from it!) I needed to find new foods....

Nowadays, she will eat a bit more for me and even last week ate her very first piece of birthday cake! I nearly danced with joy when she picked up a fork at a friends birthday party and without me even suggesting she try it put some in her mouth!! A huge milestone for Munchkin.

Dinner these days is usually spaghetti bolognaise with spiral pasta shapes (if you change to a different shape it's not accepted) I have her eating bananas and a variety of potato shapes and waffles for lunch, and she now tries dairy free chocolate (no daughter of mine could go through life without chocolate hehe) She still wants to be fed as doesn't want her hands to get sticky, and will not eat anymore if any is spilled until it's cleaned up but its not as much of a struggle these days as it was...

Friends who just "get it"...

2009-08-25T15:00:00.000-07:00

I'm currently blogsitting for the lovely Hammie on her work blog and it got me thinking to friendships that have evolved since Munchkin got diagnosed... Like so many mothers of children with special or extra needs, it's not until the chips are down that you find out how strong your friendships are as you become almost consumed by all the therapies, appointments and all the extra needs that your child has on a day to day basis. Autism has an almost instantaneous grip of your life, spreading and seeping into every aspect of what you do. It controls where you go, when you shop, what your child wears and so on and on... Needless to say, you become almost obsessed with finding out everything you can about ASD, and its a huge spectrum so this takes up a large amount of any time you may have. Whilst your friends you have may have even grown up with, can show some empathy and sympathise that you cant "take Johnny to the playground because its next to a main road and there are two exits", very soon they may tire of hearing about the extra needs your child has. This is why it is so important to have a support group or network of friends to talk to when things are getting you down, or if you're having a hard day as they "get it" without even having to explain. All you have to say is "shes nudie again" and they'll understand that you may have had to put your little ones clothes on ten times already that day! You don't have to explain why you need to put clothes on back to front or sew the zip up on all-in-one pyjamas... they just get it!

One of the first places that people look for information on their childs diagnosis is the internet. While you can get very useful information via the web, you also have to be so careful what you read as not everything that is printed or put up on the net is scientifically tested or tried. Whilst trawling through web pages myself, I joined a parenting website Rollercoaster and found a huge amount of support from the girls on the Special Needs forums. After posting there for a number of months I started to get to "know" some of the girls. One mother posted me on some Hanen books and we got chatting. We both signed up to Facebook so that we could see pictures of each others families and found more of the Rollercoaster girls on there too. Hammie had set up a Facebook page for Irish Autism Action and we found her and when she added us she introduced us to huge amount of autie moms and that's where I found my real support network! I'm not saying that family and friends can not be supportive but there is something amazing about having the support of friends who may not walk in exactly the same shoes as you, but wear a similar size and type!

I've been using Facebook for over a year now and the majority of my "friends" are parents of kids on the spectrum and we fondly refer to each other as our "Autie family." Any new parent who joins us might not understand immediately where the "support" is in our group, as it looks like a bunch of people doing quizzes, or playing Farmtown or sending each other gifts or hearts... But look a little closer and you will see someone post a status saying they're having a tough day... very soon there is a handful of parents online, asking how they are, sending them support and generally just letting them know they aren't alone (which is so important in my books). You don't HAVE to do these applications and no one thinks any less of you if you don't. Status updates are often questions looking for advice or just statements of how you are feeling. Lots of parents use them to celebrate the big and the little achievements our children make :) There is also the private mail facility where you can ask selected friends advice if you have a sensitive subject you wish to discuss, and don't necessarily wish to post to your profile. It really is a wonderful resource at your fingertips, especially if like myself you cannot get out to support group meetings very often. Regardless of what time I have ever come online, if I can't sleep or for any other reason, there has always been someone else online at the same time as we have members of our Facebook group in all continents :)

"From little acorns great oaks grow..."

Social Stories with Peppa Pig...

2009-08-19T14:02:00.000-07:00

Jazzygal did a great post on her blog recently on obsessions and using them to harness your childs skills such as hand eye coordination, fine motor skills, communication and problem solving, and as I read it I couldn't help but think about Munchkins obsession with Peppa Pig and other television programs. I don't know what exactly it is about that precocious little piggy that seems to catch her attention more than any other character has but I am grateful to the makers of the series as they have provided me with one of the most valuable tools I can use with Munchkin... Social Stories.

You may laugh at the thought of Peppa Pig as a tool for autism but I firmly believe that she has smoothed the path of visits to the doctor, dentist etc admirably. For every situation we have encountered, there seems to be an episode that relates to it. I remember having to bring Munchkin to an eye test and prepared her for weeks beforehand watching the episode where Peppa goes to the optician... We had to wait as they were running late so she started acting up... By the time we got in she was a bit wound up so I reminded her that this was like when Peppa went to the optician.... The Orthopist corrected me haughtily so that was enough for me to crack... I growled at him "Until they make a Peppa Pig episode with an orthopist... you're a damn optician.. RIGHT!" I was a bit stressed....

You don't have to buy expensive tools or kits to make social stories work for you. I have seen excellent social stories with hand drawn matchstick men which can be very effective. The web has lots of free drawings you can download and print off to do your own. One of my best purchases was a Tesco Value Basics laminator and I print off pictures and with my glue stick and laminator have made practically indestructible story books.

I took a series of photos for my niece over the summer when she left her beloved "Ducky" at my house after a visit and posted them onto my facebook page everyday so that she could follow "Duckys Holidays" until we were able to reunite them (posting wasn't an option in case he went awol...) I was surprised how many professionals got into the spirit of things and let me photograph them with the stuffed duck when I explained what I was doing. He visited the dentist, the doctor, the pharmacy and the hospital (xray dept for the Elder Lemons pneumonia which this bad mother was just giving paracetamol and sending him off to school!) These pictures can now be used for future social stories I have to write for Munchkin too...

"Perspective Parenting"

2009-08-13T06:19:00.000-07:00

As a reader of several great blogs, I have noticed a lot of discussion on a certain blog where a mother vents her anger and bitterness regarding her childs ASD diagnosis. The New York Times also published an article called "The Unvarnished Reality of Autism" which was a reaction to a stress study on parent of children of autism. I truly feel for the mother whose reaction to this study was published and am glad that names were withheld for her childs sake. To go through life feeling this bitter and twisted must eat away at her soul everyday! I can't help but worry how her son will feel if he reads his mothers words when he grows up too and realises how much his mother resented her life with him... It made me sit back and question why I am a positive parent and haven't been consumed by the sardonic cloud that seems to envelop others. I think the answer lies in "Perspective Parenting", and the definition of normal.

I have been blessed to work with a lot of fabulous families over the years in my job and meet some of the most amazingly positive people. The children I work with all have varying degrees of disabilities, both physical and intellectual but all severely effected. They are all great kids, with different personalities, likes and dislikes with the one thing in common... their smiles light up the room. When I first started working with them I would have to "look past" the disability where four years down the line, I see the child and not the restrictions their disabilities place on them. I have the utmost respect and admiration for the mother of some of the kids I work with. Where it could be expected of her to feel bitter or depressed, she is without doubt the most positive inspirational person I have ever met. Instead of wallowing in pity, she started a support group for parents of special needs children, councils and helps others, has unending energy and time for her kids, and is always celebrating any small gain they make. My life is a walk in the park in comparison so when I start to complain about Munchkin bolting or running off, I thank my lucky stars that she can without the aid of calipers and frames. When I moan about Munchkin not eating many food types or not wanting to try new foods, I remind myself to be grateful that she can eat, that she doesn't have to be peg fed, that she doesn't aspirate fluid from her foods down into her lungs.... When I get frustrated that Munchkin is still not toilet trained, I think of the health board nappies that she won't have to get as she can be trained, even if it takes a little longer. Perspective... its a great tool to use when it comes to giving us a self administered kick-up-the-bum! I'm not saying as a parent of a child with special needs that you can't attend a "pity party" occasionally, but don't overstay your welcome and become a permanent resident!

Instead of dwelling on what Munchkin can't or won't do, I prefer to celebrate what she can do. She is an amazing, happy fun little girl and her possibilities are endless so long as the people who love her stay positive and never clip her wings with negativity and disappointment. Another mom I talk to asked me recently when I was telling her about certain events in my life "how do you stay normal?" Am I normal? What is normal? I don't know anymore. To me, my life with my three children is "my normal". Hammie from Hammiesblog coined a great phrase recently which I love "Neural otherness is awesome" Says it all really!

Full House of Alphabet Kids...

2009-08-09T14:46:00.000-07:00

Image by Leo Reynolds via Flickr

Following a lot of discussions with fellow mothers of children with various disabilities, I noted that a lot of parents who already have one child with a diagnosis are often accused of "looking for problems" in their siblings... It is astonishing how many are told that they "want" something to be wrong, or that they are "disappointed" if everything turns out to be alright after worrying about their development. With autism, what most people don't realise is that after one of your kiddies has been diagnosed, your Autie-radar is switched on permanently. We read up on everything we can find to equip ourselves to deal with the diagnosis, and keep informed of current therapies. The life of an autie or aspie mom is a busy one of constant appointments, research and reading in order to help our child as much as possible. If your child had broken its leg, you would do exercises and physical therapy to help heal once the cast is off so that the muscle doesn't waste and your child can be up and running around again. Is what we do any different? No, only we are exercising our childs brain and training ourselves to be the most important therapist your child will ever have. With all this information going in, it's natural we will start to look at any behaviours in another sibling differently... What we may have written off as the terrible twos/tumultuous threes/fearsome fours etc. in our first baby, when we see behaviours in another child, we look at them in more detail to see if there is anything underlying there so we can intervene and help that child too. Does this mean we "want" something wrong with our child?? Hell no!

I had the opposite happen after Munchkin got diagnosed. As I said in a previous post here when my son got diagnosed with ADD it was a bolt out of the blue and something I could never have imagined. Had I been more aware of disability when he was younger, I would have noticed the signs as they were there but I just didn't see them! The tapping, the wandering off, his constant loss of attention, getting distracted in shopping centres by something that has caught his attention and just going to have a look without informing anyone... these are just a few of the things I never noticed at the time. It never occurred to me that there could be a reason for it.

When my teenage daughter came to me and asked to see the doctor, I put it off as long as I could as didn't want people thinking I was "looking" for problems... As her mood swings got worse and her intolerance for certain sounds drove her to eat in different rooms as she couldn't bear the sound of people chewing (even with mouth firmly closed) I knew the time was coming that I'd have to deal with her problems too. She was making lists of characters in TV reality shows she was watching, and HAD to control the television. No one was allowed to use the remote but her and if anyone tried to.... well the outburst was not pleasant. More than one remote got shattered against the sitting room walls... I started to wonder if this was more than attention seeking (my original denial to myself as didn't want to believe that all three of my beautiful children had problems) and looked in more detail. She was depressed beyond belief and when she came to me and said she'd thought of ways to kill herself that sprang me out of my denial and I made the appointment to see the GP the next day. Once again, it was another €55 to be made felt that I was looking for problems (see original post here) My poor Yani walked out of the surgery after being told to "snap out of it" and to "look for something positive when someone annoys you"... BUT, I did get my letter for the Child and Adolescent Psychiatry Services to have her assessed which is what I went there for. I hadn't expected anything remotely like empathy or understanding from the doctor so wasn't disappointed when it wasn't forthcoming (she did up my dosage of antidepressants though as obviously thought I needed that!)

I organised counselling for my little girl and rang the CAPS myself. Once again, they were wonderful and we weren't waiting too long to be seen. Yani was subsequently diagnosed with ADD, clinical depression and traits of OCD and she was put on Prozac... I now had a full house of Alphabet Kids...

People often when they find out about all three having a diagnosis will tell me they're sorry.... I don't feel sorry for myself or my kids, we are who we are and are working towards making life a little less stressful for ourselves through intervention, communication and understanding. Our house is never dull, and we certainly could never be compared to the Brady Bunch. We are close and even though there may be a lot of fighting at times, the teenagers are good kids. A day doesn't pass without hugs and kisses from them :) I love you kids xx

Steps towards acceptance...

2009-08-03T15:23:00.000-07:00

The weeks following our visit to the Professor were filled with moments of confused and conflicting emotions as the reality of the diagnosis settled in. I think that it is an important step that needs to be taken before acceptance can finally happen. Some days were spent with moments of great sadness, some anger, a pinch of self pity and finally acceptance. Munchkin was oblivious to my distress and confusion, which when I look back at that time is a blessing as I'm sure she would have found my constant mood changes distressing and bewildering had she understood my feelings...

Slowly, and most certainly not overnight, the moments of positivity started to become greater than the moments of depression and after a very brief pity party, we got up and moved on with what needed to be done. Every day, I would wait anxiously to see if the written diagnosis and report would arrive in the post so that the next steps of applying for things like the Domiciliary Care Allowance and Home Tuition could be taken. It seemed like months we were waiting but in reality it was closer to three weeks... Then the day arrived.

I ripped open the envelope and read the report. Even though I knew what was being written in the letter, it still surprised me how shocking it felt to read it in black and white. I made a cup of tea and let a tear run down my cheek as this was one of the moments that merited allowing a little squeeze of the heart and a little cry. There was more post to be opened. What I opened next would send my mind back into turmoil and confusion...

The AMO who had done the assessment in the July and the MCHAT scoring had sent a report back to the paediatrician I had seen previously. As in my previous post here she had agreed that there was indeed a problem with Munchkin and had urged me to apply for the Assessment of Need. The letter I received from the paediatrician, the same morning I received the written diagnosis, pulled the rug from under my feet. It was a scathing snide letter insinuating that all Munchkins perceived problems were in my head. Statements such as "inconsistent with her mother's concerns that ******* has autism" "she is young" "The Schedule of Growing Skills was very reassuring and maybe the echolalia and her difficulty understanding her own mothers speech may be due to the fluid in her left ear and not due to any difficulties with communication like autism".... once again I was left feeling as if I was being accused of Münchausen syndrome

The old feeling of self doubt started creeping back in and my transition to acceptance had been given a huge setback. It would take a few weeks of self searching and constant questioning to get back to where I had been before reading that letter. When thinking back to it now, I feel immense anger that someone I expected to trust, and indeed the first professional to take me seriously could make me feel this way. It made me realise that we are not "people" to some doctors, merely a name and a hospital number on a chart. Months later, when I saw the AMO for the DCA assessment, my faith in some doctors were restored when she remembered Munchkin from the original assessment and when shown this letter from my file, was extremely irate that we had been treated this way. She promised that it would be raised in a meeting that footnotes of observations must be considered along with the MCHAT and Growing Skills scoring charts. I sincerely hope this is the case now for the sake of children undergoing these assessments now...

Well... are you happy now??

2009-07-27T16:20:00.000-07:00

In early July 2008, we got called for a full developmental assessment by the Area Medical Officer (AMO). It was an extensive assessment which covered all her physical, emotional and intellectual milestones. The AMO also completed the MCHAT autism assessment on Munchkin and went through the results there and then with me. As we had already had the SLT and OT assessments completed the results concurred with the results that day. During our discussion, the AMO informed me that there was no facility for her to record her observations that day, but rather the forms were a scale and she could only mark and score per se. She actually pointed out to me that as Munchkin had echolalia, she would have to mark that she heard her "talk" and that she had language. I was strongly assured though at this time that her SLT assessment would be showing up her deficit in communication even though she didn't have the opportunity to record her social and communication deficit (beggars belief how the autism scoring MCHAT can leave no room for comment!)

In September, just days prior to Munchkins second birthday, I managed to secure an appointment with "The Professor". Munchkins Dad insisted that he be present for this assessment, and for a time I was reluctant for him to attend. I thought long and hard about it as he was so much in denial then that there was any problem to address, but permitted it as for one, he is her father, and I also thought it may be useful for the professor to meet him! We headed for Dublin on the appointed day, nervous and unsure of what to expect. In my heart, I knew what the outcome would be, but part of me craved and begged to be told I was paranoid, that there was nothing amiss and Munchkin was fine!

We arrived early and sat outside the house, silent. We decided to head to a nearby pub for a cup of coffee while we waited. The silence between us was formidable and I spent the time picking the cuticles on my fingers as the nerves were setting in. When it was almost time, we headed back up to meet the Prof...

As we were ushered into the office, it struck me how child unfriendly this situation was. His office was wall to wall paperwork and books and there were obvious Munchkin attractions everywhere! Instantly, I felt as if the good professor was indeed an expert in this field as he knew it from the inside out so to speak. There was limited eye contact, lack of social graces and a certain brusqueness to our meeting. During the initial few minutes of our conversation, while I was opening up to my innermost fears, I was handed a piece of paper.... I quizzically looked at him and was told "my bill"....

We did a detailed history of both myself and Munchkins dads history which turned up quite a few surprises for me from his side... Then it turned to Munchkins developmental history. He was very in depth with his questions and I answered them to the best of my ability. All the time, Munchkin was lining up stones on the chair, sticking stickers from a magazine I bought her in categories, flapping a little, ignoring anything that was asked of her... but the most memorable thing for me was watching the professor look at my ex as when he's stressed, he sticks his hands in his pockets, but the rest of his arms flap... his mother once told me he's always "flapped like a little chicken". He also explained that he thinks in hexadecimal and other gems.. I also had to admit to such things as I can't stand ticking clocks... won't walk on grass in bare feet.... hate sand... and other such intolerance's....

At the end of our hour with him, he had diagnosed Munchkin on her 18 month review as regressive autistic. He said though that she was in his opinion at this time Aspergers Syndrome. He stated that her mind was extremely logical from what had been observed of her in his office and how mechanical her thinking was (this was from watching her work out his window locks and try each of the keys from his bunch in the locks....) The hours of work that had been done with her over the preceding months, and her reaction to the exclusion diet had been astounding to which he said we were extremely lucky to have intervened so early. The report he was to give us however, would state Autism Spectrum Disorder DSM-IV Regressive Type to gain maximum resources as at her 18 month markers, this would have been his diagnosis after her regression from the seizures. I walked out of that meeting, not shocked, but still feeling like the rug had been pulled from under my feet..

We strapped Munchkin into her car seat and both me and her Dad sat silently in the front of the car doing nothing. For what seemed an eternity there was nothing... not even a sound from the back of the car.. then the words.... "Are you happy now??" Happy???? How in the name of God would he ever think I was happy?? Upset? Confused? Frustrated? Bewildered? Angry? even relieved? yeah.. all of them! But happy?? It was not a case of "nah nah I told you so", but it meant we could move on from here and do what was needed for our little girl and not keep this "is she/isn't she" farce going. The moment I so needed a hug and reassurance, I was getting this mental kicking instead. I wanted to text my close friends and family to say we had got our diagnosis but there was something stopping me. I couldn't write it down or say it as that would make it real somehow. If I could just delay that moment for a while longer I would as saying the words made it real somehow. I thought I couldn't feel any worse but I was wrong :(

It's only looking back now that I realise how difficult times were back then. My life seems so different now and so much richer. I have met some incredible people through my journey and they all have different stories to tell and routes they have taken. I am humbled by their strength and their humility and am blessed to know them. You know who you are :)

Assessments, assessments, assessments...

2009-07-21T12:30:00.000-07:00

I ripped the plastic off a folder and thought to myself do I really need one? I stuck in the few appointments and the blood test results and a couple of hundred empty plastic pockets. Labelled a few file dividers with various assessments I knew would happen under the Assessment of Need and stuck it up on a shelf. I really didn't think that less than a year later that folder would be full and I'd be looking for a bigger one!

Munchkins first assessment was her speech and language assessment. We went in not knowing what to expect. The assessment was extremely thorough and even though Munchkin now could say some words and had a small amount of language, she fell very behind in the tests. Her receptive and cognitive was atrocious. She had some echolalia and could label about 10 items from cards at this point. The SLT said that she needed blocks of therapy and would do right into adolescence. Words like pragmatic language therapy and Floortime and Earlybird were floating around the room. I was given a list of targets to put into her program and sent on my merry way with application forms for Earlybird.. I still a year later haven't heard back from the therapists who run Earlybird as they have been on maternity leave and once again the HSE didn't apply cover for them... I often wonder where Munchkin would be now if I hadn't been trained as a tutor and think often about parents who are left in this limbo.

Second to come was the occupational therapy assessment. It was ascertained that her gross and fine motor skills were excellent but her sensory problems were causing her a lot of trouble. As I talked with the occupational therapist, Munchkin colour coded all the pegs on the board with all the green together, all the red, all the blue and so on. When we looked at what she was doing, we both actually laughed out loud. The OT armed me with lots of exercises to do with Munchkin but warned me that she wasn't allowed to "give me a program" but not to worry, her report for the assessment of need would be so detailed, I would be able to extract a program myself. She put Munchkin on the waiting list for OT but warned it would be at least two years til she'd be seen again! As the assessment of need still hasn't been completed, I don't' have access to the report so have had to rely on what I remembered from the assessment and get ideas from other autie moms and dads (where would we be without each other!)

Next assessment was the feeding assessment where it was decided that her feeding problems were all sensory and not behavioural. Once again I was given some ideas to try with her but little else. To this day, feeding is still a major stumbling block with her and she still cannot drink out of an open cup. OT apparently will help but when?? I was given details of chewy tubes, electric toothbrushes and a list of websites to look at for oral sensory equipment. We still have problems with "sticky" foods and foods that require chewing but we plod on...

The psychology assessment still hadn't happened by the August so it was time to get the money together to go privately.....

Being taken seriously

2009-07-13T15:49:00.000-07:00

By the May, my life resembled a good Western movie set. On the outside, everything looked ok and stable but if you went behind the scenes, you saw that the set was held up by strategically placed props... remove one of these and the whole lot would come tumbling back down again! My props were my family and friends who gave me emotional support and a shoulder to cry on when thing were getting too much for me. I'm sure they must have been fed up at time with my preoccupation with autism and all things autism related but never once waivered... always there was an ear to listen, a hug to help when words are not enough and support to keep going. On the other hand there was also denial from Munchkins dad and his family who didn't want to believe there was anything wrong. Hammie from Hammiesblog wrote a wonderful piece called "D is for Denial" which helped me understand to a degree their reluctance to accept what to me was obvious...

The appointment day with the paediatrician at hospital finally arrived and I bundled Munchkin into her buggy and sat in the waiting room. When we were called in, I was greeted by not only the paediatrician, but a team of medics. We sat and discussed my fears and observations while Munchkin strained to be released from the buggy, whining and crying. I was asked to ask her questions such as "what do you want", "do you want to get out", "whats the matter" "Up?" with no physical prompts whatsoever. I did so and Munchkin just carried on whining and straining at the straps. They then asked me to do what I would normally do at times like this and so I put my arms out and gestured "up" and she stopped crying so I could unstrap her. They repeated several tests like that and she only responded to the physical prompts. She climbed across doctors to get to things she wanted and had no stranger fear whatsoever! After about 45 mins, the paediatrician concurred with me that there was cause for concern and wrote down the details for Assessment of Need and urged me to apply to get started with that. She also referred Munchkin to the AMO (Area Medical Officer) to have a full developmental assessment and the MCHAT scored... Finally I felt as if someone was listening! I went home with my bundle of information and numbers and set about ringing and writing letters thinking we would be able to get moving properly. Little did I know that over a year later I would still be trying to get the Assessment of Needs service statement finished...

Bombardment of Social Interaction....

2009-07-08T15:38:00.000-07:00

Today, I visited a play school that had been recommended to me to have a look and see if it would suit Munchkins needs. I had thought that I would hold off with playschool til the following September as she will have 20 hours HT a week in September to fit in too. It wasn't until I looked back over the last 18 months and seen how far she has come socially that I reasoned it would be unfair not to allow her to have at least one session a week there. I dropped over unannounced to the playschool to discuss placement with them and found a group of very happy, bouncy giddy and compliant kiddies there cooking their fairy cakes and generally having lots of fun. I instantly got a good feeling which grew stronger as I was given the guided tour. There is a main room with all the arts and crafts, puzzles, tables and chairs and table top work. In this room is also the kitchenette with stairgate to block entry. Then I was shown their imaginative play room which was fabulous! There was a toy shop built in and a stage and a castle and plenty of dress up toys and accessories. The third room caught my attention instantly as was the quiet circle time room which also had beanbags and books in it. When I mentioned that Munchkin would sometimes need a quiet place they said that this would be ideal for her. Everything was so geared towards keeping the children safe, happy and occupied. I loved the idea of a structured environment for her to learn in too. They are aware of her aspergers and said that they are only sanctioned to enrol one special needs child per year! Well Munchkins place is now set in stone! I liked their ethos that if a child has a challenging behaviour, that the child is not named bold or labelled in any way. They offer a positive reinforcement policy with all the children.

"Behaviour is not 'naughty' just because it does not conform to adults standards of behaviour. Children need to learn which behaviour is acceptable, and which is unacceptable"

Thinking back to the early days, if you had told me I'd be excited at the prospect of my daughter going to playschool I'd probably have just shrugged. Back then, I was only at the beginnings of our social bombardment. I had been blessed that I made friends with two pregnant moms at my antenatal classes and our babies were born a few weeks apart. We had kept contact and so plan A could be put into operation. I organised a lunchdate for the mums and playdate for the kids in my house the first day. We all ate and chatted but I watched the social interaction (or lack thereof) that was going on between the children. This weekly lunch date became a regular fix in our social calendar and before too long, other mums joined in and our social group grew. Munchkin coped fine with the other kiddies coming in around her but she would be so quiet while the other kids ran around playing etc. I was also bringing Munchkin to a local mother and toddler group on a Thursday and would sit back observing all the other toddlers running around, playing, coming and showing their mums toys etc. Everyone would comment on how good Munchkin was, and "doesn't she play happily by herself" etc... I would look over and see my baby repetitively flicking a lock on a cupboard or emptying the water filter.... after a few months of this I left one day in floods of tears as the "gap" in the social development was widening and my heart ached for my little girl. I gave myself a break from this torture for a while and concentrated on the social lunch/play dates that were working well. That was one day a week, so for the other 6 I would endeavour to have one of the kids over on their own, or we would go to their house for a short playdate. This worked fabulously as she was able to learn one on one with her peers, but also had the social group too :) Her imaginative play was starting to grow and watching the others with the toys definitely helped kickstart that. These days, her imagination astounds most people around her as she definitely "sees things" in other objects etc. I was given help getting her to show me a toy using hand over hand and it didn't take her long to learn.... now I'm shown everything she has hehee. She definitely forged friendships with her little playmates and they loved her too :)

She also spent a lot of time in the beginning up in Dublin one day a week to see her cousin R, and I believe it is with R she developed her first actual bond. They still adore each other when they see each other.

These days, she will happily go into the creche in Dundrum Town Centre and not look for me at all :) Having seen this progress, I made the decision that she needed playschool at least one morning a week so am delighted to have found such a good one that is able to cater for her needs.

It's ok to be different....

2009-07-04T03:58:00.001-07:00

My sister sent me these images today and I got a lump in my throat. Why? Because to me they symbolise everything I believe about our children. It is ok to be different. Does it make you any less beautiful? Absolutely not. It is far too easy to focus on what we believe to be wrong or missing with our children and miss the little things that make them uniquely wonderful. If you were to look at this peacock, would you see an albino bird and criticise its missing pigmentation, or would you look and find it breathtakingly beautiful....

I was advised in the early days to please please not spend every second analysing my little girl, not to lose sight of her little soul and to enjoy her. Great advice but as many others have found, very difficult to do in practice. It is something I advise people to do now though too. My daughter may be on the spectrum, but she is an amazing, funny, happy little girl with a laugh that is infectious. Her quirks are part of her personality and without them, she'd just be a bog standard multicoloured run of the mill peacock...

Trying the diet..

2009-06-30T03:52:00.000-07:00

The following weeks passed by in a haze. Armed with flashcards, reinforcers and a cup of strong coffee every morning, we would get the day started. I had to learn to break my speech back down to single words again and go right back to basics. I used Munchkins interest in books to my advantage but she was no longer allowed to browse them by herself, she had to allow me to participate. Quite quickly, I realised she couldn't (or wouldn't) point. I worked for months and months using hand over hand to teach her how to do this. To this day, she will still point with her thumb instead of forefinger if she's tired. She loved to stack blocks so this was another strong reinforcer and had a love of stones so gathered a small bucketful to use too.

I decided to take her off all gluten and dairy as had heard a lot of parents had good results with this and I was astonished how quickly she responded to the diet. It was as if the fog was lifting and she was suddenly interested in her surroundings. Her eye contact improved dramatically and she started sleeping at night! She had been a three times a night waker up to this point. I wasn't surprised when her blood tests showed strong intollerance to dairy, soya, wheat and eggs, but was astounded that she was also intollerant to pears, apples, beans and peas! These were things I would never have thought of removing from her diet. I'm not Jenny McCarthy and I'm not saying that all children on the spectrum will improve using dietary restrictions but do believe that if your child has food intollerances and you have blood tests to confirm this, then yes, there can be significant improvements in behaviour, attention, eye contact etc... It must be stated it is not a cure but worth investigating. If your child has no IGg antibodies, it would probably be pointless restricting their diet as you most likely won't get the gains I've mentioned (In my opinion, I don't have a medical degree!)

Munchkin had a lot of sensory problems at this time too and I spent a lot of time on desensitising her while using her strongest reinforcer (Elmo). If she wanted to watch the furry little monster sing and dance on screen, she had to let me rub her feet or touch her hands. She had particularly adversive reactions to having her hands touched and if she wanted to push you away, she would always use the back of her wrist and never her fingers. She used to sleep in my bed and I would have to lay my arm across her chest (not my hand, only my forearm) and she took comfort from the pressure. I implemented a home made OT program which involved a lot of deep pressure and squashing using cushions. She needed this rough and tumble every hour or so or would become distracted and whingy. She loved to be wrapped tight in a duvet and swung or squashed. You had to squash for only a second though and release quickly and it took time to figure out what her limits were as she hated being restricted and still does.

I also bombarded her with social interaction.... but thats another blog post!

Getting up and getting started...

2009-06-23T13:30:00.000-07:00

Pulling yourself together is easier when you have three children depending on you to get up and act as if everything is going to be ok. Even though every morning the "Autism Express" chugs through your brain, (you know the one girls... the sound of a train going chug-a-chug-a only its the single thought "autism-autism-autism-autism"...), you get out of bed and drag yourself down to perform the perfunctory duties. Nappy change, bottle, drive the kids to the school bus and back home to sit and be alone with my thoughts. After a while, I decided that I needed a plan. So I sat and worked out what I needed to do. Autism had my daughter but I wanted her back!

I emailed the family I worked with to ask their advice. I got a phone call from Australia that very night giving me the much needed support that would put me on the road to early intervention. As I said in my first post, I don't know what led me to work with my little friend but now I was equipped to help my little girl. I had received an appointment to see the paediatrician but it was going to be another two months before she was seen. I didn't want to wait any longer and see her regress further into herself so it was time to take matters into my own hands. I had the tools and knowledge just needed to put them in place. Suddenly, I didn't feel so useless.

My tutor friend dropped me over all the old notes from our courses so I could brush up and get back in the saddle so to speak. I poured over every note and made a list of reinforcers I could use. I was lucky as Munchkin did have some toys she liked and tv shows (Maisy Mouse and Elmo) so wasn't relying on food reinforcers of which she had none. And so we started ABA.

5 mins, €55 euro and a prescription later...

2009-06-21T16:03:00.000-07:00

Image via Wikipedia

I made an appointment to see my GP as soon as I was able to and waited anxiously to see her. After an hour of fidgeting in the waiting room, it was my turn to have 5 minutes of her time for €55 euro. I sat in the chair and let Munchkin loose while I talked to the GP. I explained my fears to her and was astonished how she fobbed me off with the "she's still young... wait and see.... she looks ok to me..." lines. She had letters after her name so obviously the 5 mins she saw the Munchkin made her far more qualified to fob me off... However, I have letters after my name too.... M.O.M. and insisted she refer us back to the paediatrician who had seen us while in the hospital after Munchkins seizures. She agreed and then wrote me a script for antidepressants and valium. I left the surgery feeling as if I had been told I had Munchausens! To this day, any time we have been in her surgery, she still tries to "test" Munchkin by calling her name or asking her something. Of course, my little angel never answers her questions.

What makes me smile looking back is that as I was so unable to function normally at that time, while I was talking the Munchkin absolutely trashed the place and scattered every leaflet and booklet off the shelves. Normally I would stop her...

Becoming acquainted with the kitchen lino....

2009-06-20T04:20:00.000-07:00

After Christmas, when we had settled back into our usual day to day routine of school bus runs, homework, cooking, cleaning, working etc.... the seeds of fear started growing in my belly. Every so often, I would look at my gorgeous little girl and start to wonder, then rapidly push that unwanted thought to the back of my mind :( How could I even think that there might be something wrong, so I would stick my head back in the sand and carry on blindly in the hope that all would be ok...

Seeds of fear are like weeds though, even if you give them no attention whatsoever, they carry on growing until you are no longer able to ignore them. I started looking at what the Munchkin was doing, stacking cans, blocks, collecting pebbles and stones, lining things up, flapping, humping, obsessively looking at telly, resisiting touch and cuddles, bad sleeper, terrible eater.... yet she could suddenly look at you and melt your heart with a smile... She only liked to sit on you if she was having her bottle, facing out from you with her back to you and the second the bottle was finished she was off!

She was no longer using names at all and would count to ten over and over when excited. It was confusing as I could hear her talk when she was counting and she could hum the tune of Twinkle Twinkle Little Star pitch perfect.... When I looked at our so called communication it suddenly clicked with me that I was running a dialogue of what she was doing, following her lead and it certainly wasn't her following my instructions etc... I started to palpitate with the mere thought of "Heuston... we have a problem"...

I finally felt able and ready to ask "the question" of my friends, some of whom are ABA tutors and have worked with children on the spectrum, and also contacted the family I had worked with who we had seen over the Christmas period when they returned to Ireland for a visit. The question? "Do you think that Munchkin might have a problem.... do you think she might have autism"..... I already knew the answer I would get but it still hit me like a steam train when one by one every single person said, "well yes, I think theres a problem there" My head started to close in on me and panic ensued.

I sat on the sofa in my kitchen and looked at my little girl, standing with her back to me and started calling her name, over and over and over.... Of course there was absolutely no response! Then I started shouting it.... then singing it.... then whispering it.... No resonse, not even a flicker. I fell to the kitchen floor and the most enormous wracking sobs shook my entire body as the last penny dropped. OH MY GOD.... MY BABY HAS AUTISM!!!! I spent hours crying and howling on the kitchen lino and Munchkin just stepped over me and carried on. I begged her for a hug, I pleaded with her for just a touch but of course she wasn't interested in the fact Mommy was having a nervous breakdown on the floor. I spent a good portion of the next week becoming acquainted with every inch of the kitchen lino as I seemed unable to function. This was rock bottom. Even writing about it now is evoking horrible memories of this time and tears are streaming down my face. It amazes me how far my baby has come in this short time and I look forward to telling you about the better times from now on...

Christmas 2007

2009-06-19T05:37:00.000-07:00

Cover of Adventures of Elmo in Grouchland

Six weeks after the Munchkin had been in hospital, we went to my parents for Christmas as usual. Every year, we would descend upon my family home to devour my mothers delicious roast turkey dinner with all the trimmings. We would have a house full with my sisters, brother, aunt, uncle and neice there along with me and my brood.

I hadn't really noticed Munchkin regressing as had been preoccupied with life, teenagers, and had put everything down to her being ill. I had checked off the boxes in my head of the things she had acquired and then filed them under "completed" in my mental filing cabinet. I didn't notice that she was no longer doing things that she had done previously...

My biggest memory of that Christmas was that Munchkin was very disinterested in the hustle and bustle around her and was quite upset. All she wanted to do was to sit in her booster seat watching Elmo in Grouchland over and over.... If people started talking in the room, she would put her hands over her ears to block them out and concentrate on Elmo, Huxley and the rest of the characters... I heard and saw this movie so much I know every word of the script! We all sat eating dinner, laughing and chatting and she sat glued to that little red monster oblivious of everything going on around her!

What happens when you are not paying attention...

2009-06-17T18:03:00.000-07:00

I feel I was distracted by the Elder Lemons problems so had decided to completely ignore all the redflags that were being swung aroud me. Life carried on as normal and I even told myself that I had imagined all probs with Munchkin. Sure, wasn't she making babbling noises, she had just started to walk, why worry about the other quirky stuff. I went into denial for a short while until one fateful morning in early November 2007. I had had another sleepless night with Munchkin (sleep was a big big big prob in the house!) I woke up with the vomiting bug and physically couldn't take care of Munchkin so I asked the my teenage daughter Yani to mind her so I could lie down upstairs. 5 mins later I heard the screams from the kitchen... I ran downstairs to see what was wrong.... Charlie appeared to be choking in her highchair. I whipped her out and turned her over and checked her airways, nothing visable lodged. I repeated the baby heimlich while Yani phoned for an ambulance and we were told that it'd take 45 mins for the Ambulance to pick us up so we said feck it anyway and I drove my precious cargo to a&e. At this stage she was breathing again but unresponsive and sleeping..

All the time we were on gurneys at the hospital, I had the indignity of vomiting into the tinyest kidney bowls known to man! It was ascertained that she hadn't choked but had had a seizure. They decided to admit us as they couldnt' figure out why Munchin had had the seizure...That afternoon, just after feeding her, the nurse suddently stopped and pointed. Munchkin had keeled over on the bed and was in a grand mal seizure! Temps were taken and nothing abnormal there. It baffled us so lots of blood and other samples were taken for analysis and other tests.

She recovered nicely in hospital but did subject us to "Elmo in Grouchland" over and over and over..... We left hospital and we never ever got a conclusive or satisfactory answer as to why this happened!

Teenage Intermission...

2009-06-17T17:22:00.000-07:00

I must admit, this one came totally out of the blue for me! My handsome, intellegent, sweet, popular, gentle and kind "Straight A Student" totally derailed..... I was heartbroken but determined to help sort out what was happening to him. I was put on the swift upward learing curve of self harming, abusing alcohol and occasionlly indulging in the wacky bakkie to mention a few! I felt I had lost my Elder Lemon somewhere along the way when I blinked for a nanosecond. I spent months crying in bed worrying about how to help him as I couldn't just stand back and hope for the best! This is when we became aquainted with Child and Adoloscent Psychiatry Services who I must say are fab and very helpful (just a shame theres are stupidly long waiting lists to access them!)

After several visits and evaluations Elder Lemon was diagnosed with ADHD!! You could have knocked me over with a feather as had not seen that coming! In hindsight, it did explain a lot of things that he had done but I still had not expected that as in my limited experience thought that ADHD kids were disruptive in class, getting into trouble a lot and that didn't sound like my Elder Lemon.... Once again, I was wrong lol. A lot of his ditsyness could fit in with what they were saying... the incessent tapping and clicking, his total overwhelming energy... I would have accepted the diagnosis earlier. It didn't help that he has a photographic memory and a very high IQ which apparentely makes the diagnosis harder as he was coasting school.

We went to assessments and reviews every few weeks and they recommended Concerta to start. Wow the difference was amazing and I started relaxing about Elder Lemon :)

Munchkin turns one!

2009-06-17T16:42:00.000-07:00

R and I separated just before Munchkins first birthday and he was staying with friends til he sorted out accommodation so things were a little strained to say the least. I got a cake and we gave presents to her when R came down to see her that day. I recall thinking it odd that Munchkin didn't dive into her chocolate cake with gusto the way the older two had at that age but rather picked cautiously at it... It niggled in my brain for a nanosecond then was pushed back to the dark recesses of my mind to be considered at a later date when I felt ready. The recesses were at this stage crammed with all the points and signs I had noticed but felt ill equiped to deal with at that time. Was far easier to grab a spade, dig a hole in the sand then stick my head in it for a time. At this age she was already showing red flags for autism, for example, she couldn't say Mama or Dada or any name for that matter yet could count to ten!, she had no functional form of communication per se as would not point at any item she may have wanted... she had no way of letting us know her needs and wants. She didn't put her arms up to be lifted and resisted being held chest to chest. She flapped a little and liked to stack blocks. At this stage, crying and tantruming was her most effective form of communication as quite often her grandparents would intervene and give their well meant advice which quite often ends up making the situation worse... I knew that the stuff I had mentally logged was going to have to be acknowledged sooner rather than later!

Our first holiday :)

2009-06-16T18:04:00.000-07:00

When Munchkin was 11 months old, we decided to take a "make or break" holiday. Relations between myself and R had gone steadily downhill and we had attended councilling. We had severe communication difficulties and with a young baby and two teenagers in the house, we were rapidly heading for rock bottom. This was it... time to pee in the pot or get off. Bags were packed and we jetted off to Turkey...

Munchkin as you can see from the pics had a lovely holiday but unfortunately it was to be the last we would spend as a family...

The early days...

2009-06-16T17:45:00.000-07:00

After our scare things settled into a day to day routine. Occasionally, autism would pop into my mind and as early as 3 months would often comment that Munchkin wouldn't give eye contact. You could hold her in front of your face and she would look at your ear or the picture behind you regardless of how much you turned her towards you... Just as you thought she wouldn't look you in the eye, she would turn and look and you were ok again...

She was never a great feeder, and I put that down to the fact she had a slight tongue tie and I had to stop feeding after a couple of days and put her on formula. We then had a three week period of colic, reflux, sleeplessness, crying etc... I decided after trying every colic remedy known to mankind that I'd have to relactate (not an easy feat!) and try to feed her myself again. It cured the "colic" but we had a weird feeding system going as she hated the tummy to tummy feeding and after a while, would only feed if I lay on my side on the bed with her propped on pillows and I wasnt touching her. I had no idea of her sensory probs at this time just accepted that this was the way we had to feed. When I went back to work I got a friend to mind her and will never forget that she had to "drip feed" the milk to her...

She was developing on a par with all the other babies that were born to mums I met when I was pregnant so started to relax as I marked off things on my mental list....

eye contact (intermittant)... check
babbling (on reflection not great)... check
physical development... check

I was relieved as thought we were in the clear....

The Munchkin has landed...

2009-06-16T14:35:00.000-07:00

September 2006 arrived and every day seemed an eternity. Mid September, after a chocolate muffin and a cappicino to commiserate another day passing with no sign of madam making an appearance, I had my first contraction while browsing a local department store. My friend drove me home like a bat out of hell despite my insistance it would be hours before anything real happened... I was wrong! I barely made it to the hospital and the Munchkin landed 9 minutes after being admitted! All 9lb 4oz of her was in a very big hurry to make her stage debut and this left me in shock for a few days!

We went home 12 hours later and attempted to adjust to dressing, feeding and taking care of this tiny vulnerable person who was now controlling our home with her demands and needs. Autism was not at the front of my mind in these early days as we now had another worry. Munchkin had been born with a dimple in her spine. We didn't know how deep it went as couldn't see and there was a small amount of hair growing from it. I crumbled inside thinking the worst and instantly mentally tarmaced the driveway for her wheelchair being the big pessamist! It was also noted that she had an "ear pit" which was also a neural tube defect so we went through a series of Xrays for her spine, Ultrasounds for her kidneys to see were there any missing or anything abnormal about them, hearing tests etc.... I remember standing at the hospital asking the consultant before these tests what the dimple and pit could represent and barely hearing what his answer was as the room was spinning with the words... spina bifida... kidney and renal abnormalities... deafness... I recall asking the doctor afterwards could he not have "sugar coated" it a bit for me as I was hanging on by a fine thread. Thankfully all that stress and worry was for nothing as it turned out the dimple didn't reach the spine and it hasn't effected her mobility at all (as you will see later on in the blog, I have a mountaineer lol). Her hearing was fine and her kidneys normal so we were able to put this behind us.

The first seeds of fear....

2009-06-16T13:58:00.000-07:00

It was now July 2006 and was a hot and humid summer. Pregnancy had gone well so far apart from a bleed early on and everything was going to plan. We had found out we were having a little girl and my husband and two children from my first marriage were all looking forward to meeting the Munchkin in September! My inlaws lived in the UK so we travelled over when I was 32 weeks pregnant to see them.

***** section removed by request *******

(Certain events that happened while we were there made me start to question if my husband was on the spectrum)

I took refuge in the bedroom and cried cradling my bump and praying I was wrong. I was suddenly scared for my unborn baby too. All of a sudden, all my husbands quirks and ways screamed aspergers at me. We had joked in the past that he was on the spectrum but now it didn't seem so funny anymore...

In the beginning....

2009-06-16T13:46:00.000-07:00

When I decided to blog I wondered where could I even start and decided the beginnning was the most logical place to start.. I think back to the years before the Munchkin came into our lives and wonder what guided me to leave my office job of 12 years and get out of the "Big Smoke". I packed up my life and headed off into the hills with all my worldly possessions, my two children, one cat and one dog...

We landed and settled in our new home and the kids were making friends and happy in their new school. Everything was peachy bar one thing... a job. I trawled the papers and went to numerous interview to no avail. One day, while searching the job listings, I spotted a small ad looking for "An energetic and kind person required to play with 4 year old autistic boy". I'm not sure what kept drawing me back to this ad but I eventually rang the number and spoke to the parents who arranged for me to come over for a chat. I worked and fell in love with this little boy for the next two years. His parents sent me on ABA/VB courses and every other course that was available in Ireland and I was embraced as part of their family. It was heartbreaking when they left Ireland and I still miss my little friend to this day. I decided when he left not to take on another teaching post as had just remarried and was now expecting a baby. Exciting times..... Life was good and the future looked bright.