A Walk with Liam

It has been my experience that most special needs parents, present company included, are a little, how to put this politely, off. The constant struggles to get services that our child needs and deserves, the extreme highs and lows of their medical conditions and the sleep deprivation can make a person question their sanity. It changes the hard wiring in our brains. Over the years I have befriended many parents that, if I hadn’t had Connor, I may have avoided. We can spot each other in a crowd. The grocery store can be a terrifying place of sensory overload for a child with Autism. The bright lights, the loud overhead speakers and the masses of people can turn what is a mundane task for most people into a nightmare for special needs moms and dads. Yes, we see each other, nod knowingly and send a smile of encouragement as the child hits the floor in a tantrum. There always seems to be that one person that doesn’t understand what is happening. Suggestions of a good butt whooping or other forms of corporal punishment are usually given by these folks. “My child would never be allowed to act like that,” they say smugly as the scurry by. Good for you! You have a typically developing child with you, I don’t. Go spank your own kid but leave mine alone. I used to carry business cards in my wallet that said “My child has Autism. Please be patient”. On the bottom was information from the Autism Society of America suggesting they educate themselves about Autism. I would hand them out in the grocery store until I ran out of my first box. I gave up when I realized that these people prefer to remain ignorant. Connor and I were shopping in a home improvement store once. He recently had his leg casts changed and they came up to his knees. He was sitting in the cart and figured out how to kick his casts on the metal part of the cart. There was a woman shopping next to us with an angry expression on her face. She was annoyed by my child seeking sensory input by kicking the cart. I hardly noticed it. She suddenly came over and hissed at him as she placed her hands over his casts to get him to stop. I grabbed her hands and in a blind fit of rage threatened to break her fingers if she didn’t let go. She turned pale and backed away. We continued shopping as if nothing had happened. You can mess with my mind; you can mess with my money, but don’t mess with my kid. Yep, we special needs moms are crazy. People will say the silliest things. One time we were at the grocery store and Connor had his hearing aids on. Normally I would take them off before we went in, but I was in a hurry and forgot. Suddenly, a woman walked up to our cart and put her face an inch away from his. At the top of her lungs she yelled, “Those are the cutest little hearing aids I’ve ever seen!” Connor jerked away from her and started screaming. She said, “Oh, I’m so sorry. I didn’t mean to scare him.” Really? Well you did, now go away. I came to expect these types of interactions with people that don’t understand disabled children. What is more frustrating to me are the parents of special needs kids that are floating up the river of denial. Connor used to attend a school for Autistic children. Some students had multiple disabilities and were more severely affected than Connor. The school would have group therapy sessions for parents once a month. I attended two meetings as an observer. I listened to the other parents and didn’t provide any input. By the third meeting I was becoming increasing weary of their stories of sunshine, rainbows and butterflies. They sounded as though life was peaceful and perfect. Gosh, wasn’t it great to be a special needs parent? They smiled and cooed as they talked about changing poopy diapers at 3am on a kid that weighed eighty pounds and was trying to take their head off in the process. There are labors of obligation and there are labors of love. The previous was not a labor of love. Finally, I couldn’t take anymore. When it was my turn I stood up and said, “I’m sorry, but I thought that we were in a safe haven that allowed us to share the challenges of being parents of special needs children. Don’t get me wrong. I love my son. But this is my third meeting and I am beginning to feel that I am the only one that does not enjoy all the daily struggles that we endure. I don’t find any humor in getting punched by my son at 2am. I would love to know what it is like to sleep more than four hours a night. And no, I don’t look forward to changing poopy diapers.” I looked at the mom who had told the story and noticed her eyes were welling up in tears. “Can we all get real here and agree that our lives are much more difficult than the parents of typically developing children? It is the life we have been given and we all make the best of it. But please stop suggesting that every minute of every day is a joyous event to be envied by other parents.” Suddenly, everyone stood up and applauded me. The poopy diaper mom burst into tears and came over and hugged me. I hugged her back. We are all in this together. Let’s not try to make out like this is the life we would have chosen for our children or ourselves. Three of my favorite T-shirts say, “You can’t scare me, my kid has Autism”, “It is what it is” and “I’ve got this”. That pretty much sums up my life. This is not the life I wanted but I will make the absolute best of it.