Saturday, July 16, 2011

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!)

Tuesday, May 31, 2011

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

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.

Thursday, May 26, 2011

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...


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!


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"...


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.


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...


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?

Thursday, April 7, 2011

A letter to my daughter

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

Sunday, January 9, 2011

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"

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