Autism is something I never imagined that my world would revolve around. It all began with a phone call from the school about my son, Justin, who was 5 at the time, not participating in class – odd behavior, not being sociable with staff or peers. Next, I received a letter from the school, asking us to have him tested. Following that assessment, a meeting was scheduled.
The psychologist finished reading her reports and then said, “autism.” And as she was describing what autism was in detail, time stood still. I was frozen, watching everyone in that conference room look at me with remorse in their eyes. I couldn’t move, yet my mind started racing, asking all kinds of questions. What does this mean for Justin? Can autism be fixed? A feeling of helplessness took over as I was given a pamphlet called “Special Education.” Then I left the meeting and began to walk.
I cannot recall how I got home, because my mind was still numb. I took my keys, unlocked the door, fell onto my couch and belched out tears. I began to cry for my boy. I cried for his future. I cried for all the dreams and aspirations that I had imagined for him. I laid there for a good hour thinking that I didn’t have a clue what to do next.
I went to my computer and did a search for the word “autism.” As I read, I whispered to myself, “This sounds like my Justin.” So many emotions took over. All I could do was look toward the ceiling and yell, “Why my child? This just isn’t fair. I am good person. I’ve done everything right. I ate healthy while I was pregnant. I took it easy. I listened to my doctor.” After the yelling, I’d walk around the house brainstorming ways to make autism disappear for Justin. I remember thinking that maybe if I worked harder with him it would go away.
Finally, I came to terms with it. I said to myself, “OK, Justin has autism and it’s not going anywhere. So now it’s time for me to learn how to be Justin’s support system.”
I remember ordering so many books on autism and special education that my kitchen table was covered with enough to last a lifetime. When I sat in that very first IEP meeting I was so scared. Everyone looked like giants and spoke in acronyms that I never heard. I felt as if they were speaking a foreign language. Everything was abbreviated or hyphened down to three to four letters: SLP, meaning Speech Language Pathologist or LRE, which stood for Least Restrictive Environment.
I felt that none of the books I ordered had prepared me for this. The special-education world seemed like the world of Oz, and I was Dorothy trying to find my way home – only for me, home was Justin. All I wanted to do was learn how to navigate the system and learn how I could work with the schools to help my son. A part of me was very intimidated by the professionals in that room, and I had to slowly teach myself to not be afraid to ask questions, because no question is a wrong question when it comes to helping Justin.
It took some time for me to learn the ropes, and I must admit that with each new year and each transitional change in Justin’s IEP, I slowly started to find my way. Special education is still Oz, but I’m learning how to adjust and so is Justin. Yes, there are days when you become frustrated and want to just cry. Then there are days when your child has learned to reach a goal, writing or reading a new word, or calling you “Mom” for the first time.
My dreams and goals for my son have changed because he’s different, and I have learned that doesn’t make him less. It makes me more interested in learning what he loves and what he likes to do. Today, Justin is 16 years old, a Special Olympics athlete and an ambassador for Special Needs Network, and I’m very proud of him.
Entering into this world has made things a little easier, because I’m more able to get to know my son – to discover that his favorite color is blue, he doesn’t like extremely loud noises and superheroes make him feel special. Even though we’re now in the world of Oz, I’ll happily live in this world if it brings me closer to Justin.