April is Autism Awareness Month. This was one thing I never thought I would have to be aware of. Our child was diagnosed pretty late, which made it an even deeper shock to take. Today I’d like to share the story of the first time we became “aware” of this difference, and how we have evolved to happiness, love, and acceptance.
It was six years ago this month. S had already been diagnosed with ADHD, and life was complete chaos. We had finally agreed to put him on medication and had wraparound therapists coming to the house to work with him, but something still didn’t seem right. His behavior was still out of control. On the advice of a friend who was a therapist, we changed wraparound agencies and had them meet with the school. S was six-years-old and in kindergarten at the time. He struggled in school and the teachers seemed to have no idea how to handle him. He played alone because the other kids teased and ostracized him.
So I brought the Director of the new wraparound agency and S’s new therapist with me to meet with the principal and the kindergarten teacher. The meeting started off much like other meetings about S; the principal and teacher reading from and endless list of their “concerns” about S. To me it sounded more like complaints and how much they didn’t like my kid. Seriously, how can anyone complain this much about one six-year-old?
Then something happened. I noticed the Director of the new agency getting more restless the more “faults” that were pointed out about S. All of a sudden she stood up and stopped the meeting and said the following words:
“Why has this child never been tested for Asperger’s Syndrome?”
I couldn’t hear anyone after that. I could feel my heart sinking through my stomach and legs until it finally hit the floor. Sure S had issues, but we never considered Asperger’s. Asperger’s is autism. Autism doesn’t go away. My baby has autism! At that point tears sprung to my eyes and I began to sob.
Everyone at the table rushed to assure me everything was going to be okay. They told me S was going to be just fine and develop normally. That’s not entirely true. Our family has endured late nights because S refused to sleep, terrible meltdowns, S trying to bolt out of the house and in public places, hundreds of hours of therapy and doctor appointments. We have even been hit, kicked, punched, and spit at.
Life would never be the same without my guy.
I don’t want to diminish the experience of autism for any parent. It’s hard. There are days I know I wasn’t sure I was going to make it through. Days I begged for my husband to come home from work because I just couldn’t take it anymore. Nights I lied on my bed crying uncontrollably, feeling I had failed him as a mother. I didn’t know what to do to help him, to make him feel better. I just couldn’t fix whatever was wrong.
But I can’t dwell on those days. I know there are way more good days than bad. I know S is an amazing kid. He is smart. He loves technology. He is a talented artist whose drawings blow my mind. He’s funny and has one-liners that make my belly hurt from laughing so hard. He is kind and caring to everyone around him. He is an important part of our family, and we can’t survive without him.
This is what I encourage all autism families to do not only for the month of April, but for every month of the year. Focus on the good more than the bad. Focus on what your child can do more than what they can’t. Concentrate on the joy each of these children bring. They aren’t damaged or sick. Yes some of them are disabled, but they all are different, and we should celebrate that difference. I understand life is not easy for all of us, but all children with autism, and their families, deserve acceptance and love and as many happy moments as possible.