Today is World Autism Day. While I do not support Autism Speaks in any way, and I also don't really like the whole 1 day out of 365 to devote to those with autism, I will take this opportunity and "day of awareness" to talk about my super awesome son, and maybe lay to rest some common misconceptions about autism.
The Autism Speaks lady will have you believe that autism is the worst thing that can happen you or your family. Did you know they are wanting to create a pre-natal test that will screen for autism while the parents can still choose to abort?! They want to eradicate autism completely....I call that murder, but I digress.....
My son's story Story:
November 2004 I was working at the Huntington Mall. I ran a kiosk....super cool, right? Anyway, I kept feeling sick. I was a student in college, pre-med....I became so dizzy I actually walked into a wall at the library. I thought I had a really bad sinus infection. Imagine my surprise when 2 little lines popped up, especially after being told that would never happen! We were thrilled, excited, and I was terrified! 35 weeks went by in a flash, until suddenly my water broke. (I have a spider to thank for that...) We went to the hospital, I was hooked up to pitocin, and 4 and a half hours later I was a mommy to a beautiful 6 pound 19" baby boy with a head full of black hair that curled around his little ears. He struggled with nursing, and he couldn't even suck from a bottle, so we fed with with a medicine dropper and a medicine cup until he could. At just days old he would stare at a quilt with a busy pattern. At a couple months old, when put in his little swing, he would stare at the bar of the swing going back and forth. We didn't know at the time that he was stimming even then. At a few months old he would watch the ceiling fan, and cry when it was turned off. When he was able to get on his hands and knees, he would spin so hard and so fast he could go a full rotation with out his knees touching the floor. Imagine a tiny little 10pound 5 month old spinning in the floor that fast! At 1 he still wasn't speaking, he wasn't pointing, he wasn't following 1 step commands. He would open and close cabinet doors and the door to his Playschool garden over and over for hours....literally HOURS. He would pace back and forth with his head down as if he was a caged animal at the zoo. He would stand really close to my mom's couch and pace back and forth while watching the striped pattern. He would shake his head so violently I worried he would give himself brain damage. He would bang his head so hard he would have bruises. He would run off, but since he didn't respond to his name, he just kept going. He would stomp his feet, flap his arms and hands....but he LOVED people. A friend sent me a message, after I talked about how I was getting worried because he wasn't meeting milestones the way he should, and she told me she thought he might have autism. She took the time to find out who I needed to call in WV to set up Early Intervention services. Had it not been for her, B wouldn't have started therapy as early as he did....and he may not be the kid he is today. I honestly can't thank her, or a few others enough for all their help and guidance, and hope in those early days.
I changed pediatricians because the first one he had was just bad. She ignored everything and passed it all off as he was just a preemie. We went to Dr. N. At 14 months old, and after about an hour in the room, Dr. N told us B showed all the signs of severe autism. He prepared us that B may never speak, show emotion, play with other kids or toys, etc. I told him we had already contacted WV Birth to 3, and we were to get the first eval. in a few days. He said that was great, and promised to help in any way. I'm pretty sure if Dr. N ever moves away, we will follow. I could ask for a better doctor for B.
Birth to 3 services began with Miss Kelly made a visit to my mom's house. B, at 14m old, was on the level of a 6 and 7month old baby in terms of speech communication. Then OT came, and he was behind there. Miss Debbie joined our crew, and we would soon learn that B would not regress with words, but with foods. Then came Miss Julie and Miss Jackie was added in a bit later (There were others as well...) and we've had the smells of cinnamon and the tunes of Tooty Tah stuck ever since LOL!
August 31, 2007 B was diagnosed with severe autism. Big thanks to Julie for being by our side when what we already knew was put into words. It doesn't matter if you already know it....hearing it is always hard. We were using the PECS system (he started it on his own with a Bear in the Big blue house book! He brought us the same page over and over for days, he wanted the crayons on the page!) and we were talking about electronic devices for communication. He knew basic sign language (go, more, eat, drink, candy, no, yes, we can't play in here, we can't do that, stop...NOW....lol you know, the important stuff....) and one day, standing in the kitchen, after an hour of crying he did it! HE SAID BUBBLES TO GET HIS BUBBLES! I'm not sure who cried harder! Him, me, or Kelly! He still wouldn't talk, but Jackie made sure he had all the PECS cards he needed (I still remember all the time we spent laminating those with clear contact paper! I think I still have a few!) (I could write a book just on the process of him learning to speak....)
Fast forward to getting kicked out of an amusement park, or having management at O'charley's ask if we needed EMTs for him, to rude restaurant patrons and people who refused to understand. The road was not easy. But I wouldn't change a thing because today, I have my B. I have a child who is well behaved, but uniquely spirited. Quirky and sensitive, and lovable and honest. Creative, and funny....genius, yet understated.
Autism is by far NOT the worst thing that could have ever happened to us. If anything, it has been the best thing to happen to us. It has made us appreciate the little things. We don't over look little milestones, or take things for granted. His words have power! How many parents out there ignore their kids words, or don't take the time to listen. We are so blessed that we don't just hear his words, we learned to listen to them. We gave them power. We didn't dwell on "you can't," instead we've focused only on "you CAN." We have laughs, and he has stayed innocent longer than others. At 9 he will still get enjoyment from Sesame Street, or he will sit down and watch Fast N Furious.
The first 4 or 5 years were hard. They were full of hours and hours of therapy, therapists coming in and out of our home, and us going to them weekly. It was so full of sickness and dr's appts. that Dr. N called the first time we made it over a month with out a sick visit, worried that the worst had happened.
TV, the media, and even Autism Speaks will have you believe that autism is full of tantrums, meltdowns, and the need to physically restrain. That autism is full of learning disabilities, kids/people who avoid others and want nothing to do with society or social situations. They will have to believe that if your child is diagnosed with autism, that a death sentence looks more appealing. They are wrong. They are so very, very wrong. Autism, like other things, is different in every person. And there is nothing in the world that is ever always or never. If you are told your child will never speak, why listen to that? Why take that at face value and give up? If I had done that, then maybe it would have been true and B wouldn't have ever spoken, or gotten better. But I didn't. And I may not be the doctor today that I was in school to be nearly 10 years ago, but I have the most amazing son. I may not cure cancer, but he might. Autism is not an evil, shameful label. It is just a term to describe the way someone's brain works that is different than the way others work. And with early intervention you CAN pull your child back through that window. Those with autism do not dislike others, or being around others. They dislike the stigma they have attached to them thanks to the likes of the media. They long for friends, acceptance, and understanding. They are better people than the people who judge them harshly. I'm proud of my son. I am blessed to have him....and I challenge anyone to disagree with me that he's a fantastic person. So while I will not wear blue, or light anything up in blue to support Autism Speaks....I WILL wear blue today to support him, and others on the spectrum. I WILL wear blue today to show the world how amazing awesome my son with autism is, and how awesome others like him are!
Autism affects 1 in 68 children born today. My son is one of the 1's. It is a neurological brain disorder. If you believe your child may have autism, don't wait. Contact your state's early intervention program, and talk with your child's doctor. Early intervention is key! My son was diagnosed at 2yrs old with severe autism, and today...at 9 his verbal and social skills are above age level.