Autism Awareness……….what it means to me.

MichaelSo today is April 2, 2015.  I realize I haven’t blogged in almost two years.  But today I finally had something to say.  I started this blog to share my thoughts and feelings about raising a child who had autism.  So on today, “World Autism Awareness Day”, I figured it was time to pick up the writing again.

Today, the internet and television are FLOODED with reminders to “Light it Up Blue”, wear blue, post a ribbon on your Facebook status, etc.  The entire month of April has been designated as “Autism Awareness” month.  All of my friends who have children with ASD are posting stories, thoughts, and feelings on their statuses.  And yes, it’s all very nice.

But what does autism awareness mean to someone who has been intimately “aware” of autism for 10+ years?  Where do I start?

I’m going to begin with this whole “wear blue/Light it Up Blue” business.  All of this “blue” business started with the organization, Autism Speaks, created by Bob and Suzanne Wright, when their grandson was diagnosed with autism as a toddler.  When Michael was younger, we raised money for this organization (even were awarded “Grand Club” status for bringing in over $1000), attended their walks, bought puzzle pieces in stores, etc.   But honestly, over the years, I myself have lost a lot of enthusiasm for this foundation, due to the way autism has been portrayed to the public.  There is a movement of people who are firmly against Autism Speaks because of different reasons – one of them being the “doom and gloom” presentation of autism to the public.  Is autism hard to handle as a parent/caregiver/friend/family member?  Yes – absolutely.  Has it ruined the lives of all of those afflicted by it and/or their families?  That would be an affirmative NO.  Bob and Suzanne and their daughter, Katie, are passionate about helping families afflicted by autism and have done some wonderful things for the autism community.  There’s no denying that.  They fund research, raise money, and have developed some great online tools and networking opportunities for families who are struggling through diagnosis.  They have created documentaries spotlighting families with children on the spectrum. But my personal view is that, in addition to the good things they are doing, they are creating pity for the autism community.  Think about this for a minute.  Is pity something most people strive to receive?  I, for one, DO NOT.  Do you know that, according to Google, “SHAME” is a synonym for pity???   I am NOT ashamed that my son has autism.  I have met some of those most amazing people in the world that I would have otherwise never known had it not been for Michael.  I don’t want OR need pity and I certainly do not have shame when it comes to our situation.  What I hope for is ACTION; and the realization that everyone dealing with ASD is going through something different.   There’s a saying in our community – “If you’ve met one person with autism, you’ve met one person with autism”.  I don’t see that thought resonating through the Autism Speaks organization. As a matter of fact, just prior to writing this blog, I read an article where Suzanne Wright called the diagnosis of their grandson “horrifying” and “heartbreaking”.  Not really words that I want to associate with my son.  After all, autism is not a death sentence.

For years, I wished for Michael’s autism to “go away”; I searched for that magic supplement that he could swallow that would make him speak and socialize; we went to four different doctors to evaluate him and decide the best types of medications for him.  I thought surely SOMETHING would change him and make him better.  But honestly, is that the way to go through life instead of appreciating him for what he IS?  Michael will be turning 13 next month.  For those of you who haven’t met him or haven’t seen him since he was small, he looks like a regular pre-teen, although he’s smaller in stature than most of his peers.  He can speak, but only 5 – 6 words at a time at the most.  His receptive language FAR exceeds his expressive language.  He understands most everything he’s told or asked and follows directions well.  He has little interest in playing with other kids and is much more content to put on his earbuds and listen to his iPod for hours on end.  As far as his demeanor goes, you’d be hard pressed to find someone sweeter than Michael.  He loves his family, his teachers, his therapists, and classmates.  Recently, he’s been playing “Masterchef: Junior” in my kitchen – the concoctions that are put into my microwave are……..interesting.  He’ll request to make brownies or popcorn and will happily help me in the kitchen.  He loves to go for walks, especially when Mike walks our dog around the neighborhood.  When he’s frustrated about something, he’ll yell and bite his hand or exclaim “I need help!”.  He still needs help taking a shower and is learning (at almost 13 years old) to tie his shoes.  It seems (knock on wood) that he has FINALLY stopped eloping and we no longer have to worry about police officers knocking on our door at 8:30 in the morning because he escaped out of the house while we were sleeping.  We take family vacations every summer and Michael has a great time.  No – we haven’t gone on an airplane with him since he was a baby, but we are hoping that kind of trip won’t be so far into the future.

We are EXTREMELY fortunate to live where we live because there are such phenomenal programs in our community for children with special needs.  Michael has been running and playing soccer for almost 5 years with a local organization called Parkland Buddy Sports and is now attending a music program through an organization known as “The Friendship Initiative” started by an extraordinary man named Jeb Niewood who has worked tirelessly to provide opportunities for children with special needs.   I am also blessed to work for an employer who provides benefits which cover 100% of Michael’s intensive ABA therapy which he receives in our home 4 to 5 days a week.

I read an article today written by a mom with three daughters on the autism spectrum – she made some very good points.  Autism Awareness isn’t a “celebration” – while you wear your puzzle pins or maybe install your blue light bulbs, remember the little things that can be done that will really make a difference.  Volunteer at an organization that directly helps people with special needs.  Talk to your children about treating all people with respect – no matter what their challenges may be.  Talk to that bagger at the grocery store who obviously has challenges instead of trying to get away from them as fast as you can.  Every person in this world has a reason that God placed them here.  Remember that when you shake your head and whisper “poor thing”.

Autism awareness isn’t just being aware of what autism is and feeling sorry for those of us touched by it. Actions speak louder than blue lights.