The E Theories

"You can't change a person, but you can change how you react to a person." I don't know who said it, but it is definitely true. If you are raising a child with special needs this quote can take on a new and deeper meaning. One day last year I was putting on Evan's pajamas and becoming increasingly frustrated with how slow the process was. I was rushing and he was ambivalent toward the task at hand. In that moment I realized two important things. The first was that he is going to get dressed at his own pace and if I stopped expecting him to be faster, I would stop becoming frustrated. The second was that if I continued to dress him he would not learn how to do it on his own. Lia, my two year old, was eagerly trying to get herself dressed because she wanted to and because she was able to. Evan wasn't interested and his delayed fine motor skills made it hard. This started me thinking on how I had to adjust the way I handled situations with Evan in order to help him and to maintain my sanity.

This brainstorming resulted my general do's and don'ts of raising my son with Asperger's. The key word is "general." Every child is different and every situation is different. I always keep these rules in the back of my mind and try to apply them as much as possible. Will I be applying them on a long flight packed with people? Not so much. I will be doing whatever I can to keep him quiet and happy and keep the "your kids better not kick me seat" stares to a minimum.

The first theory deals with "exposing." I feel like exposing Evan to all sorts of situations will help him in the future. One example is his sensory issues. Instead of sheltering him from crowded or loud places we exposed him to those situations. At three years old we decided to take him to his first movie. We talked about how it would be a big room with lots of people sitting in chairs. We explained that it would be dark and the screen would be very big and the movie would be quite loud. People would be laughing and maybe even clapping. We made sure to get a seat in the back close to the door. Emergency exit is right! We had his favorite snacks ready and he sat in our laps as the movie was beginning. The first half an hour was a lot of questions (him) and a lot of explaining, soothing and bribing (us, us and us). He became more comfortable and was able to sit through the rest of the movie. Madagascar 2 will always hold a special place in our hearts. We recently took him to Princess and the Frog and the only problem was he would get so excited he would forget to whisper. Many things don't come naturally for children with Asperger's and we have to be there to teach them and give them the tools to handle new or tough situations.

The second theory is about "engaging." This is a big one for Evan. He is a very happy kid and likes his happy little world. He could sit in front of a mirror and script for hours, but that is not helping him. It is up to me (and any teachers, therapists and caregivers) to pull him out of his comfort zone and try to engage his mind. During these times we do activities that help with his speech like worksheets, games or question cards. We might play games outside that help with his motor skills like bike riding, ring toss, or hopscotch. I also like to try to get Evan to color, paint, or do other activities that help strengthen his fine motor skills. We may just play together where I can enforce social skills like turn taking, cooperation and conversational speech. I do believe that there has to be a balance. He also needs his own time to play where he is completely relaxed. I am pretty sure for Evan, my idea of play is more like work.

My first "don't" is a tricky one. I call it "enabling." As a mother our natural instinct is to make our child happy. But when you have a child with Asperger's it is a whole different ball game. What might make Evan happy is owning every single Eye Spy book in existence. But if I gave in I would be in debt to Barnes and Noble and more importantly I would be feeding one of his obsessions. At some point he has to learn that that can't always happen and work through the consequences. When Evan wants me to participate in scripting and be a character from the movie Heffalump, I can't always give in. Even though I think it's adorable that he wants me to be Kanga to his Roo, I have to redirect him and try to get him to stop scripting...at least some of the time.

My last rule is about "expectations." As I mentioned before, you have to adjust your outlook and be realistic. The more you know about Asperger's the more you will know what to expect in terms of developmental milestones and behaviors. You have to know who your child is and what makes them tick. I can't expect Evan to finish his meal at the same time as his sister, even though she is two years younger. I can't expect Evan to interact with his peers like his other classmates. Expectations only lead to frustration and disappointment and one should never feel that way about their child. I have learned not to expect Evan to be like anybody else but Evan.