Pick Your Battles

Has it really been a year since I last blogged?  I guess so...

So what has dragged me out of hibernation and compelled me to put my thoughts on virtual paper tonight?  Fighting.  Virtual, cyber, internet bullying and scrapping. Thats what. I have previously waxed lyrical about the importance of social networking here, here,  here and  here etc....  Yes its important and I still think its the best thing since Messrs Johnston Mooney & O'Brien took a knife to a loaf and packaged it but its not the bee all and end all of your World.  Or at least it shouln't be...

Over the last twelve months or so I have tried to pull back a little from spending so much time online. Yes, I still check Facebook at least ten times a day (mainly while I wait for the lights to change shussshhhh) but the days of having to trawl back through every post or check every friends page in case I "missed" something has long gone thankfully. You see, spending all your available time online has a major drawback. You spend less and less time with the people who matter most in your life, your family, your children and your flesh and blood friends.  Unfortunately though, its a bit like an addiction isn't it?  You think you'll miss out or not see something if you aren't online.  While you're facebooking/tweeting/emailing/texting though, what are you missing going on right behind you in your kitchen/living room/playcentre/park/beach?  (Yeah with iphones we log on everywhere)  Don't get me wrong, I'm not saying don't have a cyber life as most of us know how very isolating and lonely it can be being a SN parent, our online friends are our support network, but just have a look at your usage and how its impacting your life...  How many of us have been "busy" when our kids are trying to involve us in something, or look over and thank the "Silver Lining of ASD" that our little one plays happily by themselves so that we can read what someone has posted or offer a reply of support etc.  Makes you think eh?  The irony hasn't escaped me that my gorgeous daughter is playing with her Moshi Monster cards while I type this either.  Yes, I'm guilty.  As she doesn't go to sleep til gone midnight though I'm going to write my words down before sleep deprivation removes them once again from my addled mind.

Ok so back to fisticuffs on the internet...  What am I talking about?  People slagging off children with disabilities, specifically Autism. Yep Autism is the A word. We've had the N word, the R word and other lettered words that have provoked great reactions from the public in the past (and present) but the current one appears to be to insult a person by calling them autistic.  We saw in the last few days outrage over 50 Cents tweets in response to a person where he told them "just saw your picture fool, you look autistic". Yep this was in response to being told to release the album or be shot again. I get he was angry and that was the insult he used to reply. Instead of apologising he compounded it by saying "don't want no special ed kids on my timeline follow somebody else".  Nice going "Mr Cent".  Way to alienate and fuel a generation of ignorant uneducated kids (I'm referring to some of his fans not children on the spectrum by the way) to think that people with Autism or any Special Needs are "lesser".  Not cool at all dude.  Hey, there is outrage though and gigs are being cancelled and Fiddy will learn the error of his ways through his pocket. Deservedly so.  Social networking and people power at its best.

Then you have the Facebook Pages... The hate pages, the rant pages and while they are disgusting at best, we go after them with the same tenacity as we do the likes of a public persona.  Where admonishing and boycotting and blogging about the likes of Fiddy will hit him in the pocket, reacting to these hate pages does the exact opposite.  It FEEDS them.  Do you think that for a split second, some spotty arsed 16 year old lad looking for attention behind the anonymity of a computer screen is taking in anything you write in rebuttal of some vile comment they have posted?  I see parent after parent pour their hearts out talking about their beautiful kids trying to change the opinion of the poster.  Its not going to work though. You can't educate pork as they say. They posted it to get a reaction and they're getting exactly what they want.  You may get one page taken down at a time, but twenty more vile b*stards are rubbing their hands thinking "wow, using autism really gets a response, what page can I create now to p!ss them off and wind things up".  In an attempt to stop one page, its creating a snowball effect.  In an attempt to protect our kids and change the World they live in, we are actually making it worse. I might not be popular for saying that but its my opinion. My advice is if you come across one of these pages, report it but don't engage with them. Put them on extinction as such. We need to pick our battles not go looking for more to fight.  Haven't we enough to be fighting when it comes to services, entitlements etc?  Walk away from the Internet Trolls, seriously.

I see the same people online every time I check in.  Gearing up to fight the World and "make things better" for our kids. That's noble, but in spending all day fighting invisible people who frankly our kids will never know in real life, it would appear we've lost sight of making the World our children live in, actually live in, better.  Seriously, whether you hate me for my opinion or not, I really don't care.  I'm speaking up for our kids who want their Mom/Dad/Sister/Brother/Friend to get off the damn computer from time to time and just sit with them and watch tv,  or play with them, or just be a physical presence beside them.  Don't look back and regret time lost. And yes, I'll probably see you over on Facebook later but right now, I'm going to read books with Munchkin

xxx

My name is Petunia and I am a...

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!)

Grieving? But no-one died?

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?

Whats worked for Munchkin?

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...

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.....

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 :)

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!

Jump? Sure... How High?

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...

My Child is not a Stereotype...

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

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.....

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 :)

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!)

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

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...