April 05, 2011

I'm Aware...Are You?

April is Autism Awareness month! And I'm aware that we are a week into April and I've yet to post on anything Autism related. My fellow bloggers with kiddos on the spectrum have been lighting up the blogosphere with facts and stories and information. Well done! Last year I did the same thing. I don't blog about Gabe's Autism too much, unless I am fighting the insurance company for services...don't even get me started. I think this blog does serve its purpose when it comes to Autism awareness. But I am aware that my son has Autism every single day. I use this blog often times as an escape/voice from that reality. As a parent of a special needs child, you live it, breathe it, every day, every minute, every second.

Autism influences everything in my life, it is a constant, you cannot forget about it even for a moment. I change my work schedule, again, to accommodate the continual therapies we travel to everyday, nice at $3.80 a gallon {worth every cent}. Autism affects what we eat everyday because Gabe is gluten, casein, soy free, so no fast food, everything has to be planned in advance. We don't do spur of the moment too often because Gabe has transition issues and high anxiety. I drive the same route to school every day, because a detour would cause a panic attack. Haircuts, dogs and invading his space, cause Gabe to go into a state of repetition to try to regulate. We don't sit in the pew in church because Autism doesn't understand how to speak softly. I'm out with friends or on a date {woot} for some "me" time and Autism inevitably creeps into the conversation.

We do play together.  We hug.  We say "I love you".  We go to the park.  We try new things.  We laugh.  We tell jokes.  We play hide and seek, and musical chairs.  We sing together.  We live a normal life, our normal.  And everyday it gets better and easier.

Autism has no face. Autism has no cure. Kids are rarely misdiagnosed {yup, I said it, FACT people}, in my experience; many kids are not diagnosed, because some signs have been ignored. Most children who receive early therapies thrive as adults; the younger we catch it, the better the outcome. Diagnosing Autism is not filling out a 10 question survey online (did that before he was officially diagnosed). It is called Autism Spectrum because every child is affected differently in varying degrees of severity. What may work for one, may not work for the other, one kid flaps, one spins, some have seizures, some script {we script, love when G does his Despicable Me, "assemble the minions" cracks me up}. And so the parents of these kids are left to their own devices with our kids as the guinea pigs because the world is asleep. Autism is not just "Rain man".

Gabe's diagnosis on the Spectrum completely changed life as I knew it, or dreamt it would be. In one moment all the dreams you have for your child seem lost; and there seem to be no answers and they are needed so desperately.  Diagnosis is not a death sentence, but in fact some what freeing.  That I don't have the bad kid, or the kid who doesn't listen, or the kid who freaks out when he has to touch play-doh.

But in these two years since diagnosis I have learned a few things....

That I will make it through this, that I am doing all I can, that it will be okay, that HE will be okay, that I have the most wonderful support group, and that my job first and foremost is to love that little boy. If all I give him is love, and he learns to understand that, won't that be enough? It is for any child. {Make sure they know that}

The other day in the car, I was doing some preparation with Gabe about our schedule. We must prep, and talk through it so there are no surprises. I said, "After school, then gas station, then church". It wasn't Sunday; I was helping serve a meal so this was different. Gabe and Autism are creatures of routine. Usually, Gabe either accepts the schedule and we repeat and repeat, or his doesn't and he screams about it for 15 minutes, and repeat. This time, no repetition, he simply said, "why?” He is four years old, and this is the first time he ever asked me why. Its big people, yes, I was crying. He is the sunshine of my life, just heaven sent. I am so lucky and I wouldn't have it any other way. Just interrupted by the boy who said, "Vhat bug is wheelwee weeful" {that bug is really lethal per the Atom}, he has a love of the vintage superheroes.

Mona Lisa didn't show
facial expressions either.
Maybe she had Autism.
My last words are these. Our children's pediatricians are ill prepared in Autism diagnosis. THEY DO NOT DIAGNOSIS KIDS ON THE SPECTRUM! More than likely, they will not catch it, mine didn’t. You as the parent must advocate for diagnosis. A child must be diagnosed by a mental health professional, psychiatrist, developmental pediatrician (different), speech pathologist, occupational therapist, or often times special education services in your school district. And if you want insurance to pay for services, all of the above 3-5 times.

If you should feel your child might have Autism, do not delay! If you need more information or have any questions, please let me know in your comments or email me here and I would be happy to help you in any way I can. Our story is an open book.

Here are some links about Autism, click to redirect:
TACA: Talk About Curing Autism
Autism Speaks
Generation Rescue
Autism Fact Sheet from the National Instutite of Neurological Disorder

5 comments:

  1. One hour ago I published this post. I sit here now so grateful...my email, my phone, facebook has just blown up with love and support. I consider myself and my family so very lucky to be surrounded by such beautiful people, so many of you have been an integral part of Gabe's "recovery". The thing is, I have it easy. I have it so easy compared to other families and kids. Thanks everyone for supporting us we love you.

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  2. Hi Cari. I'm so glad that you commented on my blog which brought me to your blog. My girlfriend and her two sons just moved in with my son and me. My girlfriend's younger son who is 6 is Autistic. I am learning everyday that I know nothing about his Autism, even though I thought I did. I really appreciate what you just wrote and I will share it. The one thing that has been obvious to me so far is that no two days are alike with Autism. As much as the little man is a creature of habit, ironically you never know what each day will bring. Every day seems to be a new adventure and I can't wait to see what tomorrow will bring. Thanks again for writing this. It's awesome and you're little man sounds awesome as well! All the best, Brett

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  3. Brett, thanks for sharing that. I think whether people are aware of it or not, we are all affected or know someone with Autism. And so true to that just when you think you have it all figured out...you don't. It will be an amazing journey though! Little man is lucky to have you!

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  4. Hugs to you Cari~
    It is so wonderful to see how you and your new family have grown in the past two years. This journey is so amazing! Your words are beautiful and so painful at the same time. But one thing we are used to are peaks and valleys.
    Hope to see you soon.
    Susan

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  5. Susan-We WILL get together soon, although the struggles are many, as you know, it is SOOOO worth it! We visited Erin today, whoohoo!

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