I was recently brought to tears over comments made during a personal discussion in which Autism was mentioned. It was not so much the comments themselves but the nerve they struck.
A friend who has a daughter with Autism told me how similar my son’s behaviors were to her daughter’s. It wasn’t until my son was in kindergarten that I realized she was right. My son was diagnosed with Autism in 2004.
The first doctor I spoke to about my son possibly having Autism listened to some of my concerns then returned with a prescription for Adderall. I was dumbfounded. That was it? Five minutes of Q&A was enough for the doctor to diagnosis Autism and decide a course of therapy?
I do not object to medications when appropriate, but frankly, it seemed ridiculous to turn to medication as the answer during the first appointment. I was determined to get a more thorough evaluation for my son. Fortunately, I found a wonderful developmental pediatrician who worked well with our family as a whole.
Our son has Autism. We’ve struggled to deal with it. Though we began to gain an understanding of the reasons for our son’s behaviors, we were faced with a mountain of questions.
Initially, my husband was in denial about the diagnosis. Certainly, nothing could be wrong with his only son. A sergeant in the United States Air Force, my husband was deployed to Iraq within two months after our son was diagnosed. That left me to deal with it alone, as I still often do. I’ve been used to the ‘single parent’ status that I must adopt each time my husband is separated from our family because of military duty. Autism has changed the dynamic dramatically.
It actually gets more difficult for me every day for several reasons. My daughter, who is two years younger than my son, has been acting out more often. Her level of disobedience and some of her actions completely baffle me at times. I’m still trying to figure out if her behavior is a result of her father being gone for several long months, how having a brother with Autism affects her, or that she’s just trying to be a teenager at ten-years-old. It’s probably a combination of all three.
I’ve noticed that my son is old enough now to see his younger sister happily juggling a vast amount of friends, being invited to birthday parties, having sleepovers, etc. He doesn’t have any of that.
My son is polite, well mannered, outspoken, and kind. Though he won’t pay much attention to another person’s side of a conversation, he will talk someone’s ear off if you get him started. Dr. Martin Luther King Jr. and WWII are his favorite subjects.
I’m now used to my son’s endless questions that can cover five different topics in as many minutes. I do my best to give answers that satisfy his curiosity. However, since my son has difficulty comprehending another person’s involvement in a conversation, and that his questions can run in a string that lasts for hours, my patience is frequently taxed.
He continues to progress academically in school. However, he still struggles socially. Though he sees the same children in school every day, he rarely remembers their names. I’m saddened and worried about him every day when I drop him off at school because I know he has no friends and is taunted by the children who don’t understand his behaviors. The handful of children who are nice to him are the rare few who feel empathy for him.
With the help of teachers, speech therapists, and paraeducators, I’ve seen a great deal of improvement in my son, and in my optimism for his future.
But optimism is quite vulnerable. I remember the moment all of my hopes took a temporary rock bottom nosedive. I was once called to the school over an incident in which my son was stabbed in the foot with a pencil by another boy because of a misunderstanding over a sheet of paper on the floor. We were meeting in the principal’s office. I listened to my son, upset and telling us that since the grown-ups won’t help him, he’ll have to learn to fight and punish the mean people himself. It scared me, broke my heart, and worried me about what he would be pushed to do because other kids pushed him too hard, and I haven’t done enough to help him.
My husband had taken time from work to be at the meeting. As I watched my uninformed husband talking to our son and the principal about the incident, I thought it ironic that my husband risks his life to guarantee the safety of our country, but we can’t guarantee the safety of our son in school.
Before the thought even entered my head, I was told by the principle that we weren’t allowed to know the name of the other student, or how he would be reprimanded. That sparked my anger and disappointment in our school system and its approach to violence between children, especially when a special needs child is involved. I had not considered either litigation or retaliation. The mere possibility was more of a concern for the school than a violent act against my son.
My first thought was how will this kind of incident escalate when my son is in high school? This time it was a pencil. What’s next?
My son is socially disabled. Some people are loners by choice. My son isn’t. I don’t know of any parent who wants to watch their child grow up isolated, and without friends.
It was in a group discussion between friends that the comments about Autism were made. While innocently thoughtless, the comments wounded a heart already filled with worry, stress, and grief over how I deal with the effects of my son’s Autism on our family.
Those comments reminded me that as prevalent as Autism is in the world, still many people are unfamiliar with how it changes you as a parent, a spouse, or how it affects you, your child, and your life when your family is personally affected by it.
My optimism for The Robin Hood Lego Campaign goes up and down. I question myself daily on whether or not I’m doing the right thing, or going about it the right way. But in the midst of the hurt I sustained over innocent comments, I realized I have to do more.
A social disability can be very damaging to the spirit. I worry for my son and other children on the Spectrum who struggle to find friends and acceptance in a society often blissfully unaware of the effects of Autism that can socially cripple a child.
I hope that The Robin Hood Lego Campaign can raise awareness for Autism. My heart will always be connected to the issue. It takes a great deal of effort to remain optimistic and strong. But I’m still vulnerable to the weight of what I deal with on a daily basis. It isn’t difficult to be brought to sobbing tears over comments that remind me that my son is without friends…
…Even if it comes in the simple analogy of a little fish swimming alone.