It really is the little things in life

When you have a child with autism, you learn just how many things you take for granted. Especially if you have other children that aren't autistic. You learn it  really is beyond impossible to compare your Autie kiddo to anyone else. I have learned a lot of hard lessons since The Boy was diagnosed 6 years ago. He is 9 years old, and should  be getting loads of birthday party invites, riding his bike up to get a Slushee, having sleepovers, you know- all the things that are part and parcel of being 9.

But we don't get birthday party invites, he is only allowed to ride his bike to the end of the street and back without one of us, has not been invited to a sleepover, not that I know if I would let him go. He has friends, other kids do ok with him, but these are just parts of life he has yet to experience, and may never get to.

But, as easy as it is to let myself get disappointed with the things others associate with "normal" life, I can't let it rule our lives. Yes, occasionally I wallow, and throw myself a pity party, but I get past it, move on and revel in the beautiful soul that The Boy is. I choose to focus on his huge achievements, his wonderful smile and silly sense of humor.

Today was one of those days that I felt truly blessed, and experienced a moment of pure happiness.  At school the kids earn yellow "tickets" for exemplary behavior and helping others. They can put these tickets into a drawing for a prize at the end of the week, into a drawing to be Star Student and read the Pledge of Allegiance and the school pledge over the loudspeaker for the whole school, or save them to buy things at the student store.

Twice now, The Boy has put his ticket into the drawing to do the pledge, and today was the second time he got to do it. The first time I didn't even know about it until the next day- he forgot to tell me. I heard from teachers and the principal what a wonderful job he did.  Yesterday, I happened to see the Star Student List and his name was on it to do the pledge today! I asked him about it, and he was very laid back about it- "Yeah, I'm gonna do the pledge again mom"

So I stayed at the school today just so I could hear him. He has this speech issue- he is very "breathy" when he talks, and is sometimes hard to understand as he takes a lot of breaths between words, and sometimes between syllables.  But he did not have one "stutter" one stumble or one mistake today. He read in a clear , steady voice and sounded amazing. I sat in the cafeteria and I cried pure, happy tears.  Just a few years ago, he wasn't even speaking, hell just a few months ago he would never have even tried to earn one of the yellow tickets.

A parent that doesn't deal with autism, or any other special need for that matter, would have probably thought I was ridiculous. These are  the little things that keep us from curling up in the fetal position and living in a constant state of depression. Little things that parents of neurotypical kids may take for granted This one little thing, just a day in the life of 4th grader, was a HUGE deal in my life.  And the pride that HE will feel from a job well done- well that is priceless.

And it is these little things we remember and celebrate.

Autism Awareness and Autism Action

Almost every time I tell someone The Boy has autism, they tell me the story of who they’ve met (or heard of) who has autism. Sometimes they ask questions, the most often asked "Do you think it was vaccines?" (I have my own personal thoughts about this, and I gladly share them- but that is not the purpose of THIS blog). They share their own experiences, and hopefully take something away from the conversation to share with someone else. Most of the stories I hear are of someone with unusual skills or abilities. I am often asked what my son's "thing" is. Is he amazing at math? Does he memorize important dates? And while he does have a "thing" (dinosaurs) it is not always a positive thing.  Yes- the memorization skills are amazing, but the inability to move on from the subject has hindered him at times.  I appreciate and will answer any and all questions that I am able to- and I will refer people elsewhere if I do not have the answer.

So  now that it is Autism Awareness Month- I have to ask myself  exactly what is it that I want people to be aware of?   Is it the rising numbers? Now 1 in 88.  Is it the sad state of our education system and it's inability to properly help our kids and not seclude, restrain or hurt them? (This is a broad statement- there ARE many great schools and teachers out there that advocate tirelessly for autistic students)  Do I want people to be aware that not every person with autism is "Rainman", that savantism only comprises a very small percentage of people on the Autistic Spectrum? How about that not all autistic people are non verbal- MANY (including The Boy) are very verbal- even though The Boy's words didn't escape him until he was 4 years old. How about the fact that not all people with autism hate to be touched? Many love physical contact and crave the sensory input  from hugs and cuddling.  How about that autism doesn't "look" like anything- that most of our beautiful children are physically indistinguishable from their neurotypical peers, and most likely you have met an adult on the spectrum and didn't even know it.  Yes- these and so many other things are what I want people whose lives may never be touched by autism to be aware of.  

I want people to be aware that Autism Speaks is NOT the only organization you can donate to. In fact- since most of the money they bring in goes to high priced salaries. I highly encourage people to Google LOCAL charities and organizations if they wish to donate, either time or money. Here are a few national organizations that I support and encourage others to as well.

National Autism Association

TACA

Autism Society

I admire The Boy and am proud of all of his accomplishmentst. He is  sweet, full of fun, and ready to try anything because he loves adventure and trusts his parents to keep him safe.  And while I do worry about his future (what parent doesn't?) I try to focus on today- and what is happening NOW.  I have lived in the past, and I have dwelled on the issue the future brings- but here and NOW is what is most important. Here and NOW is what will help shape his future. 

"It is a tragedy when children and adults with autism are not able to fully participate in their communities because they cannot access the services that would allow them to do so. The more we learn about autism, the more hope we have for treatment and the more tragic inaction becomes..." Former Sen. Hillary Rodham Clinton (D-NY)