Defeat Autism Now. Can it be done really?
Curing Autism, the Walton's Style?
Autism Therapy Aids
Autism Cure or PR Stunt?
Autism is there a miracle cure?
I am writing this article for therapeutic reasons really. As the parent of an autistic child like most others I have already read countless articles about what the usual signs of an Autistic Spectrum Disorder are and how you are likely to feel when you receive an Autism diagnosis for your child. Also just like every other parent who is living with Autism every day I have now been left with no choice but to take on the role of being my child’s one and only Autism Advocate. There is also an endless amount of information available already about the different options (if any) that are available to your child in terms of Autism Early Intervention programs in your area.
As I have already written about the Autism diagnosis process in other Hubs today I just want to deal with living with Autism in the longer term. So what is it really like when your child has had a diagnosis, you have gone through the stages of coming to terms with the Autism diagnosis. You are now most likely to be just living from day to day on an emotional rollercoaster that you can’t get off of. If you are anything like me then that probably means you regularly alternate between being a warrior parent and just feeling so tired, frustrated and continually close to burnout. The only plus side though is when you find yourself having to continually fight tooth and nail to try to get even basic services for your child you do eventually become as tough as old boots.
These days I find that refusals, condescending letters and frustrating progress reports just flow off me like an avalanche cascading down a mountainside. I may feel defeated for a day or two but then I heave the boulders off myself, get up again and I just bounce back with a new plan. Where do I go from here now?
Sure yes I have many days where I do feel walking over to the corner of the room and banging my own head off the wall two hundred times. In my dark days I do absolutely often think that yes this really is the most constructive thing that I can think of to do today. On these days too I do actually wonder what else is left that I haven’t already tried? Haven’t I already read about every Autism Therapy known to mankind and I have even managed to research a few others too. Haven’t I also tried every odd suggestion that I have heard about and I have even, as suggested tried to fine tune them to suit my child as best as I could.
Yes I have also poured over demonstration videos, leapt around my front room like a hyperactive Sesame Street character, tickled my child half to death (to supposedly encourage his joint attention play skills). I also had the decorators in and they have now wallpapered my entire house with the new ‘must have autism look,’ i.e. the PECS and Visual Schedules design.
Yes I have also borrowed, begged and stole to pay for new experimental therapies and done everything they have suggested in the books but unfortunately I am still nowhere near conquering Autism. At this stage I have to still concede that while my child is coming on very, very slowly he is nowhere near being ‘indistinguishable from his neurotypical peers,’ and the more time that passes the more I realize that it is getting very unlikely that he ever will be.
So it would seem I have still not defeated the autism. We are not yet one of those families that you see beaming out at you from another ‘Autism Success Story Website.’ There these families always are resplendent with whitened teeth and momentous smiles while proclaiming that they can actually all live happily ever after now that they have vanquished their child’s autism. Now every time I read another one of these ‘true testimonials,’ I can’t help but see Walton’s mountain in my head. The little voice in my head usually whispers, ‘remember how it always worked out just fine too every week at the end of every episode of the Walton’s. Maybe if you attend church this week and finish all your chores on time then just maybe you can be that smiling happy family too?
Most parents of a Special Needs will also know what I mean when I talk about those tough nights staring up at the bedroom ceiling well into the dawn hours worrying about your child’s future. Will my child ever talk? Will he ever really be able to cope with mainstream school? Then just when you feel that you might finally be able to nod off you hear an alarm siren blaring in your ear. You groan and yawn when you realize that yes it really is 6am already and now you must get up and prepare your child’s Gluten Free Casein Free meals for the day ahead.
Some days I walk around as if in dream not really being able to believe that my days now are filled with visual schedules, handling meltdowns, negotiating with therapists and apologizing that I didn’t always manage to do the whole sensory diet every day this week because I was so tired and my son just obstinately refused to cooperate with me on so many occasions.
Then I decide to take my child to the park and that’s when the real gravity of my situation hits me like a sledgehammer. Sometimes my son might stand in the corner of the playground flapping his hands and staring intently at the red plastic top on the railing. Other kids try to dodge past him and the occasional one looks at him in astonishment before continuing on playing and laughing with the other children.
There’s often a group of mom’s sitting in the corner chatting happily about things that I just can’t even comprehend anymore. Everyday occurrences like Jamie still not putting his football gear into the wash basket or Sophie who is well past one now and yet she is still drinking from her bottle. I try not to stare at them but somehow I just still feel so envious sometimes. If only my son could be like one of their children even if it was just for a day. Just so I could hear what my son’s voice really sounds like when he speaks and just so I could get some real idea of what goes on inside his head. Imagine having a whole hour of my son telling me about himself and just being able to say what he really wants to do today without me having to guess.
Then I realize how neurotypical I am sounding today and I remember what I was like when I was my son’s age. I loved my own company too and it was such great fun wandering through the fields picking buttercups and talking to my imaginary friend. Life only really started to get hard when I had to deal with other children and had to try and figure out how to navigate the neurotypical world. Wouldn’t it have been bliss if I could only have been allowed to enjoy the solitude and simplicity of my own world for longer. What had been the hurry to try and be something I would never be i.e.neurotypical.
You see at the end of the day my son is very loveable and unique and he has also given me the greatest gift of all. It was the one thing that I had been searching for all my life i.e. the answer to who I really am. The reason I had always seen the world the way I did was because I have Aspergers Syndrome. Now I know it was never having Aspergers Syndrome that made my life so difficult it was just the not knowing that I had it. If only I had known that I didn’t have to be ashamed of being different growing up I just had an autistic brain that saw the world differently to other girls. At least my son would never have to pretend or hide so for now while he is still happy shouldn’t I just cut him some slack and enjoy him? The stress of being autistic in a neurotypical world will come to claim him all too soon…
Autism Cure? Who knows?
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