Every parent of an autistic child remembers the day they got their child’s autism diagnosis. When we received this news, I felt like I was crossing the threshold from a life with a path we thought we could map out to a life that is even more unpredictable.
Today marks the one-year anniversary of the day we got Angel’s diagnosis and the tears still catch me off guard. They could come when someone glares at us while Angel is having a meltdown or experiencing sensory overload. They could come when I go to an IEP meeting and read Angel’s present-level of functioning in black and white.
They could come when I end up getting him the Pre-K Math workbook because even though he is in Kindergarten the K workbook seems too advanced. They could come when we encounter another child Angel’s age or younger with more advanced communication skills. They could come because another parent empathizes with me and I think someone finally gets it.
Fears come and go. We still do not have a special-needs trust or will set up. I am scared of dying. Having an autistic child makes me fear death more than I ever have. I ask myself the question most if not all parents in my shoes ask, “What will happen to our child when we are gone?”
When someone tells me that Angel does not look like he has autism, I cringe. What is autism suppose to look like? When someone does not understand my decisions or judges me for making them, I get defensive. It is my right to do so.
On most days, I put the emotional side of autism into a little compartment in my mind. I tend to focus on homework, school meetings, evaluations, doctor appointments, and the most basic question of what to make for dinner. I focus on writing for this Web site and utilizing my support system. These are the things that get me through.
It is not always easy and I experienced this when we took Angel to the Bronx Zoo this past Sunday for their Boo at the Zoo event. While we were waiting in the line to go to the Habitat (haunted) Mansion, Angel went to sit under a nearby tree with a book we got from one of their Treat Stations.
A few seconds later, another boy around Angel’s age sat next to him with his book. Next, the boy looked at Angel and asked him something. Angel did not respond. Actually, he could not respond. I think the boy was asking him something about the books they were both holding. The boy repeated his question and Angel replied, “Eeeeeeeeeeeeee!”
I got nervous. I did not say anything or draw attention to it. I did not want the boy to get upset with Angel because he was not answering him or responding appropriately. Thankfully the boy did not persist. I sighed with relief.
There are times when people ask Angel a question and he looks at them smiling. I find myself having to step in to prompt him to answer or answer for him. All in an effort to avoid that look they sometimes give. You know the one when they wonder why he isn’t responding or can’t respond. I know I will not always be there to answer for Angel or protect him from the outside world but as long as I am alive, I will try.
I admit that I get defensive and angry when people make ignorant comments because they do not understand. I do not always have the emotional strength to make every moment a teaching moment. I can’t control how people act but I can control how I react toward them. So when polarizing public figures like Ann Coulter use the derogatory r-word to make her point, I say a prayer for my child and all the children like him who have to grow up in a society where ignorance, bigotry, and intolerance rule the day.
I know we have many challenges ahead but with every challenge Angel has made great strides in his development. He is saying more words. He can say please and thank you– IN CONTEXT.
Imagine my delight when he comes to me in the kitchen and says “I want juice, please.” To some this may not seem like a big deal but this is a child who communicated by using mostly single words or pointing to make requests.
These are the little things that give me hope. I have faith that with every milestone Angel will grow up to be the extraordinary young man that he was meant to be. Autism be damned!
Thank you for walking with us on our journey. Please share your thoughts. I look forward to hearing from you.