Saturday, April 5, 2008

Autism Awareness Month

April is autism awareness month for those of you that haven't already heard. April second is recognized as World Autism Day.

Had I been a "good mother" I would have written this entry that day.

Had I been thinking ahead I would have blogged about autism every day this month.

The truth is though that while Toddler has Asperger's and is on the "Autism Spectrum" I am still new to all of this, and we are really fortunate in the fact that he is developing normally - if not for some social issues.

Asperger's is really like the "best" form of autism you could wish for. (And yes, I have tried 3 million different ways to write that and not sound callous or bitchy, but that was the best I can come up with.) The truth of the matter is, you don't want any form of autism, because it really is so scary, and uncertain and life altering.

Trust me, one of Toddler's best friends is on the other end of the spectrum and he says very few words, but that boy is so bright and brilliant - it's almost like he just can't get out all of the ideas that he has inside. Which has to be so frustrating for him, and I know that it is tough on his parents. He is making such great progress though, and that is wonderful to see. That with the right intervention and therapies these kids can come out and we can find what they are best at - and what makes them shine - and nurture it and make it grow.

Even since Toddler has started school the changes are amazing. He now can tell me about his WHOLE day, not just "I played with the toy chest." He sings songs that they learn in circle time, and he teaches us rhymes and stories that they learn. (There was and old woman who swallowed a his FAVORITE!!) These are things that I NEVER thought he would be able to do....and here we are 4 months into school and he is doing them well!!

I am still scared of the unknown. I don't know if this disease will make him one day shut down and not be able to speak or walk or feed himself again. (Doug Flutie's son went through this at age 2 and is now in his teens. While he lives a full and happy life, he needs constant care.) The chances of that happening are low, but it still scares the crap out of me.

So while I stumble through learning how to parent an "aspie" and how much fun they really are, I still think of all the parents who struggle with all the variations of this disease. I pray that soon we can find the cause and a cure so that our kids won't have to suffer through this with our grandchildren. I will try not to be scared of what tomorrow will bring, because no matter what the future is scary. I will try to be a better mom - but that is sometimes hard too....we all have our days.

Most of all I will remember that Toddler is my gift from God. Together they chose me to be his mom because they knew that I was strong enough to handle this all. And someday I will look back on these Toddler years and miss them - although some days that seems impossible - and long for the kiss snuggle and hug that Toddler gives us every time we ask for a hug.


Karen said...

I think every disability sucks. You're grieving the child you didn't have while at the same time feeling like you have to be grateful for the one you do. I mean, you *are* grateful but at the same time there are so many unknowns about what kind of life they'll have etc. Plus the grieving that, frankly, society doesn't let you do. Yes, all kids are gifts, but I sometimes get so frustrated not knowing who actually is "in" there. My kid has Down syndrome, not the same as autism (though often combined for extra fun!), and after 4.5 years I am still learning how to live my life in the present. If nothing else, I think *that* is my son's biggest gift to me, which is actually pretty huge.

Inspiration Alley said...

Your post really touched me, and I am also the mum of an Aspie. We've had many difficult times, and there have been times when sensory pressures and anxiety have caused my son to regress, but we've always found a way through and he's currently doing brilliantly again. I wish both you and Toddler all the best and I'm sure that the future will hold some very special moments for you both.