Photo: Lynette Sanders Photography: www.lynettesandersphotography.zenfolio.com/blog
When Jacob was two years old, he had his first major meltdown. He was prone to tantrums and head bashing. Since I had been a head basher as a child, my mom gave me the advice to let him do it for a bit til he realized it hurt and then he'd never do it again. That's pretty standard parenting advice for most people. At the time, we had no clue there was an issue with Jacob, so fed up and wanting it to stop, I acquiesced. What followed I ended up videotaping for when we took him into the emergency room. Within a minute, he had broken his own eye socket and chipped 6 teeth. This is not a story we have ever shared publicly, nor do we share often. I share it now because I want our friends, family and my readers to understand how serious and scary this condition can be. After this episode, Jacob's doctor told me he thought he was a child with autism. I reacted like almost every mother I know when she heard the news. I cried and swore up and down he was wrong. My son had broken his own bones, but I was convinced there was nothing wrong with him. I desperately wanted nothing to be wrong with him. I ignored every warning sign that confirmed the doctor's diagnosis, until one day, he was three years old and I realized he couldn't hold a piece of silverware. Ignoring it wasn't making it go away, and it was time to face the problem and do whatever I could to help my child live as normal a life as I could.
My reaction was one almost all women have to an autism diagnosis. We all have dreams for our children from the moment we find out they're on their way. We debate different names, trying to figure out which name suits him best. We make every decision during pregnancy and after as if it could be the one deciding factor on his future! When a doctor tells you there's something wrong, all those dreams come back into question. What does this mean? Who will he be now? There used to be such a stigma to autism, many mothers do as I did and refuse the diagnosis out of fear by labeling their child, it somehow opens them up to ridicule or judgement. In reality, that diagnosis is the key to open the door of possibilities.
Photo: Veronica Vinopal Photography
Awareness is so important, not just for society to be conscious of those with ASD around them and know how to act and react. Awareness helps raise funds for research, and most importantly of all, it shows other moms who will encounter the diagnosis they aren't alone. I have an amazing support system right now that includes my mother in law, my aunt and several friends! When Jacob is having a bad day, I am able to handle everything he throws at me because I have someone to vent to. It feels like a betrayal to complain about your child, especially over something he can't control. These moms know what it's like to live with a child with autism. And while we love them with all our hearts, it's exhausting, frustrating and mentally, physically and emotionally draining some days. One of the reasons I've become so much more open about our lives is because I hope someone who reads this knows I'm here and they aren't alone! Through an acceptance and awareness concerning ASD, I've learned there's nothing to be ashamed about! My son is DIFFERENT. NOT LESS. He's a gift, no matter his abilities. The willingness of society to recognize ASD and raise awareness helped give me the strength to be more open about our struggles and triumphs. Hopefully in the future, more and more mothers will be able to skip the fear, and move straight to the "I'm not alone, what do I need to do first?" mindset.
Awareness has also helped raise funds for research and new therapy techniques that have come a long way to improving the lives of those living with ASD. Jacob had to be taught everything from how to make friends, how to talk to adults, and how to make eye contact. He had to have strength built up in his torso, shoulders and hands so he would be able to hold a pencil, use scissors or hold silverware. He had to have feeding therapy because his mouth was so underdeveloped, he would choke on food. He had trouble chewing tougher foods and would reject them completely. All these therapies, based on play for children, have been developed to fill the gaps of skill and make life easier for those with ASD. Jacob has used or is still using occupational therapy, speech, behavior therapy, feeding therapy, physical therapy and even equestrian therapy. Each one has made his life better, made it easier for him to function, and enabled him to mainstream into an integrated kindergarten classroom.
Jacob used to be terrified of new situations and new people. For about a year, he could only talk to new people if he was wearing a full costume. He felt more secure in a mask and cape and I learned his comfort was more important than mine! SO, we went everywhere with him in head to toe, superhero gear. I was in target when a woman passing by me said something along the lines of , "There goes another mother raising a future freak because she doesn't want to tell him no." I remember being devastated and upset. I wanted to protect Jacob, not open him to ridicule. While most moms will say I should have told her to shove it, I felt like it was better for Jacob, who never noticed her to begin with, to not know it had happened. Today's society is so much more open and aware of kids like Jacob, I bet I'd be hard pressed to encounter another situation like that! The openness with which we now discuss what life is like for these kids creates an atmosphere of acceptance and love!
When it came time for Jacob to start preschool, I was terrified to hand him over to someone else. We were lucky enough that when we toured schools, we found one that was familiar with autism and welcomed Jacob with open arms, costumes and all. He was treated as though there was nothing different about his attire and the kids thought it was GREAT they got to go to school with a kid who wore costumes! Several complained they weren't allowed to wear costumes, Jacob was SO cool! It turned out the thing that made him unique, made it easier for him to make friends on both sides. He was more comfortable talking to new people, and the kids thought he was awesome! Today, he goes to school like every other kid, wearing normal clothes, but I'm thankful, in that time period, there were people who understood and didn't challenge what we needed for him to acclimate.
For all of you out there today wearing blue, thank you! You're part of the solution! For those of you who donate money to autism research and treatment, THANK YOU! You help make possible the therapies that have changed Jacob's life (and the lives of many other kids) for the better! Every little bit counts!! When Jacob gets off the school bus today, I'm going to show him the pictures blowing up Facebook of all his friends wearing blue in support of him and all the kids like him! If you want to post a pic, just hashtag it #lightitupblue or #blueforJacob. You are also welcome to tag me in any photos for him to see! Together, one day at a time, we can make the world an easier place for children, adults and families living with autism spectrum disorder. Until all the pieces fit.
