Monday, April 2, 2012

Lighting it up BLUE for Autism Awareness Day 2012

-Elisa Leavitt

 Link: Where does this piece go? -Elisa leavitt

   Today is Autism Awareness Day. Today the Empire State building will light up with blue lights and all over the world, there are people like myself, who will be doing all kinds of things to "light it up blue" for Autism. It's seems silly, but when you live with someone or you LOVE someone who is on the spectrum of Autism, you get it. Autism is a mysterious and complicated thing and most of the time it is a very difficult thing to explain even to your closest family members.
    Nearly 10 years ago I gave birth to my oldest son. He came wrapped in blue. It wouldn't be for several more years that Bob Wright and his wife Suzanne would found the amazing organization Autism Speaks --not until right around the same time my son would receive his official diagnosis. Blue is a color dear to my heart. I had three babies. All of them are boys. They all came out and were wrapped in blue.
   Today, I can't help but smile as they all got onto the school bus today dressed in their t-shirts we made. It's as if the two little ones came dressed in blue as a foreshadowing of how they would grow into Autism advocates for their big brother. And they really are good advocates. On a daily basis, Autism effects them.   They have grown up with their brother's quirkiness and stims and oddities, so that a lot of it seems almost normal. What good comes from that? Well, it gives the other two "neurotypical" boys the innate ability to interact with all kinds of people.
  What my oldest son was diagnosed with is Asperger's Syndrome. It falls under the high-functioning Autism category. Under the spectrum of Autism there many diagnosis's. I do consider us fortunate to only be dealing with this end of it. It's challenging. At best, my day still involves planning and how I speak to my son, and what I'm making to eat, where we need to go, and making sure I allow 4x the time I think homework will take for him, as it always takes a lot longer than even I can foresee.
   I have friends with kids who also have children on the spectrum. A good friend of mine has a son who is in 1st grade and when he was two years old he could read at an 8th grade reading level. I stress he could READ...however, he did not comprehend a word of what he was reading out loud at frightening accuracy. He could tell you exactly how many channels were on cable, what station numbered matched what channel and memorized in only minutes the entire schedule  for the day. Another friend who visits my neighbors from time to time has a son who is 11 who is completely non-verbal and communicates only through a few signs in ASL. He still doesn't have full control of his bodily functions and in many ways is stuck at an infantile existence. The coolest thing about him though, is how with only a few minutes with him you can see just how SMART he is. I find him to be a miraculous creation. I enjoy letting him play with my garage door and watch his face light up in a display of wonder and amazement. His mother is a saint. Every moment of her day is spent following him around and trying to live her own life, which is and can never be normal by any definition of the word.

    Having a child on the spectrum of Autism means that life can't ever be normal. But who's life is normal? What is normal? I don't know, but i'm very glad that my life isn't normal. Every day I am forced to be the best I can be. (I usually fail miserably at this, but i still try) Self care doesn't come naturally to my son, and even at 9 1/2 basic things like teeth brushing are a battle. He has no self management skills and needs to be checked before he walks out the door to see if he has remembered to zip his fly and get his backpack for school. He would have no problem with going to the bus stop in his PJ's he wore the previous night, with his hair uncombed or if he had peanut butter all over his face. Sometimes, I get frustrated about this, and then sometimes I wish everyone were more like that. He is not consumed with vanity. He never looks in a mirror. He takes people as they are, with no judgement as to what they look like. Sometimes, I wish everyone was just like that.
   My life is not normal. Everyone worries about their children at school. Everyone hopes to see their child succeed. My son needs an IEP in school, and a team of people to get him through one single day. We didn't need to be told that his IQ is "just fine, if not better than average". Our kid is very smart. But it is hard to know that he will probably be a C student for the rest of his life, because his processing is screwy and test taking abilities are terrible. He has social issues, and a difficult time making friends. He has a sensory processing disorder which effects all 5 of his senses, and he has echolalia, which means he repeats himself all the time. He has tics and some of them are not unlike turrets. I send him to the local school around the corner and he spends his day largely in the regular classroom, and also goes to the resource room and sees an occupational therapist. He spends all his energy and smiles at school while he is not with me, and saves all his exhausted, moody, and overstimulated self for me. Not only do I hold my breath everyday as he goes to school.... I hold my breath, bracing for what often is a catastrophic homecoming. He uses up all his "normal" he has at school.
    As I am preparing for puberty with my son(s) --I am reading and searching constantly for answers I haven't even thought to ask yet. I know it is just around the bend. I have heard so many people tell horror stories about what testosterone does for Autism. Puberty is normal...but then again, it's horrible for regular people...I can't even imagine what it will be like for someone who is already awkward in almost every area.  I also wonder what life beyond that will be for him. Will he be able to get through life on his own? Will he be able to think beyond himself enough to function in a regular work environment? Will he be able to shower and shave without being told he HAS to? I worry. I do. I sincerely cannot imagine him being able to handle a razor. He still can barely hold a pencil.
    Lighting it up blue today for us means we all wore blue. we all wore our autism awareness shirts and we will be all going as a family to watch our Aspie son and brother play a game of floor hockey with the intramural after school program at his school. We will cheer for him. We will shout from the rooftops how  awesome we know he is and celebrate the victory that he chose to try playing on a TEAM. (no small feat!) What are YOU doing to "light it up blue"?
Educate. Advocate. Embrace. LOVE.

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