Tuesday, April 27, 2010

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

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...

Tuesday, April 13, 2010

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

Tuesday, April 6, 2010

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 :)

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