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

25 comments:

kat said...

Aw feck it Petunia I was really hoping Gia was our meal-ticket out of this recession... well you've blown that myth out of the water LOL
You have echoed a lot of my own feelings in this blog You have a way with words that I could never match x x

Lorien said...

Great post and something I find myself relating to. I too knew very little about Asd/ AS untiL it became a part of our lives. But I wouldn't change my son for the world. All our kids are different, but one thing they all have in common is the joy they bring to our lives.

Antomhic said...

Super post, I wish I could write like that about my daughter!

Elaine said...

A wonderful blog. I too am constantly being questioned about our lil man. The usual statements like 'sure my fella does that' and 'sure I know kids older than him that only have a few words' they don't see the day to day stimming and meltdowns etc. etc.. Munchkin has the most beautiful smile Tracy. XX

Anonymous said...

thanks so much for your support, the rest of the shows get even better, we call mollie, munchkin lol ,mollies mum from the show xxxx

Anonymous said...

i just read your post , what you say in some of it, i say in a sort of way in next weeks show, about if i could take it away i would, but it dont stop me for loving our munchkin more than ever , your not alone , stay strong , mollies mum from young autistic and stagestruck, feel free to add me as a friend , i also have a son with cerebral palsy and is oxygen dependent, so know lots about education statements, dla ,all sorts, here to help if needed hun , lots of love and (((((hugs))))))

Jean said...

Very well said Petunia. I gotta admit i would take away Bob's autism in a heartbeat if I could, but on the condition that it wouldn't change who he is.
It' s really frustrating when you feel your work has been minimised by people saying thoughtless things, but I think we just have to accept that those on the "outside" can never have a true appreciation of how difficult it is.
I have that programme skyplussed, and I can't wait to check it out .
XXX

Jen said...

I feel we have only just begun to scratch the surface with our son. I know not to compare him to any other child on the spectrum because there are such huge differences, same way there is differences between any children. It is a big learning curve though. Lovely post. I need to read it again, and probably again:) Jen xx

lisadom said...

Jeez! you mean they don't grow out of it? shit!!

xx and ooxx

Anonymous said...

What a way with words. For us newly diagnosed parents it's reading blogs like this that really help, Sinead

Patsyperdu said...

Brilliant post Petunia. I know some of our family see the Doc coming on and think, great he's cured or is curable. Fecking heartbreaking trying to explain that it's lifelong. You are a great advocate for asd in all its forms.

Looking for Blue Sky said...

Great post once again :) You always make me feel better about aspergers xx

Katy said...

Great post People often ask me if he good at drawing or at maths the thing is I have a child with a learning disability people often also forget that aspect too.I suppose we occupy the middle ground if you like.

Anonymous said...

great post, can relate to all of it, especially now that my little lady has made so much progress, i find myself saying "yes she had but she still....."

Sesame said...

should take a nite off and read your entire blog...u write with such ease...great post...wud never trade Babs in for an autism-free Babs..i love it...maybe if my sleep was disturbed tho i wouldnt say that so easily...but our autism is gorgeous, funny, clever, enlightening, simple and full of love and we embrace it...munchkin is adorable..

Petunia said...

Thanks girls for all the comments. I think that we as parents recognise that there is no magic cure or that its not going to disappear no matter how much therapy we provide our little ones, but that doesn't stop it hurting when others belittle (however unwittingly) the journey our kids have taken so far.

Jean, its easy for me to say I wouldn't take the autism away when things have progressed so well for Munchkin with early intervention. Who knows how I'd feel if she had more needs? I don't judge any parent that wishes it away, far from it, I just know in our situation, it would also take parts of her personality that I love. If I could get a guarantee (written in stone lol) that I'd still have her personality intact, of course I'd go for it xx

Lisa and Kat, you better find another way out of the recession hahaha xx

Molliesmum, thanks for your comment, I can't believe our girls are both Munchkin! I watched the show last night and she really reminded me of my little girl. I'm looking forward to seeing the next three episodes (can't believe there are only 3 more! Any chance of C4 doing a follow up?)

Thanks everybody, it makes my day to realise that others get something from my writing xxx

Anonymous said...

"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".

This line spells out so much for me. Huge Perspective - Bravo! & Thanks
Your Tipperary accent friend!!! X

Anonymous said...

"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".

Love this line...so helpful, as I am coming to terms with my own 4 yr old daughter's aspergers.

Clive said...

Brillant post! Lots there I concur with totally!

I would never want the NSLM's autism to disappear - he would not be the incredible kid he is if that happened, however I do want, like you, to teach him the skills to manage and cope with growing up with his autism.

Truf said...

Lovely post, Petunia, and very much applicable to my "high functioning" little man (sorry, that is technically his diagnosis). I don't like getting involved in the "will remove - will not remove" debate, it seems to divide people and usually parents with more affected children are the ones to admit they would "remove it". I much prefer to say that I would like him to have "good days" all the time, and my goal is to increase the number of days when he is alert, able to concentrate and communicative. As for "gifts", you never know, it is early days yet ;-)

jazzygal said...

Great post Petunia.

Totally with you on the questioning the diagnosis. Do it regularly. Also, when they're younger everyone tells you "sure my child does that" or "all children do this" when you lay out all the quirks. I eventually copped on and started saying "yeah.... but do you know ONE child that does everything I've mentioned??" Answer "Eh,no...but..."

Fast forward the few years after you've got the few pats on the back and interventions have made life easier for all and your child does look like there's "nothing wrong" THEN you get "See....I told ya there waqs nothing wrong and he/she'd be fine!!! Can't win! But ultimately we do really:) We do become victims of our own success though and services get withdrawn as a result. xx Jazzy

claireh said...

you have read my mind. iv being thinking the exact same kind of things the last few days but havent been able to put them into words so thank you
xxx

Lora said...

Griffin has Asperger's and there's no way I would take it away either because it would change who he is and he is just fine the way he is. Sure he has challenges but I have them too with it but I think that with time we will both learn to get through it with greater skills to boot.

I don't think that he is going to be a Bill Gates but he is going to make a great contribution to society no matter what he does, what he "chooses" to do. I am certainly not going to steer him in any direction it will totally be up to him.

As always, an excellent post!!!

Anonymous said...

well; i must have a very long way to go... i do wich i could lift away the dignose of asperger from our 9 year old daughter. at the time it felt like a prison sentence, i feel a grey door between my child and me, if i could turn the time back to 2 years ago, she was just a very shy little girl then. Now the days are more complicated, and as we have to make more time for our "munchkin" their is also less time for our other 3 children.will peaceful bliss ever come back ??their is no way to know what the futur holds for our girl, and she could verywell do better and be happier in life then her siblings....time will tell and will not take the dignose away....

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