Coping with my Daughter’s Diagnosis

A mother.

I can’t pinpoint the exact moment that I realized that my eight-year old daughter had Asperger’s. It doesn’t seem all that long ago, when she was three, that I moved her from a family day care to a larger center, hoping that she would meet children her age and make friends. Though I anxiously wanted her to have play dates, she seemed to prefer roughhousing with the boys instead.

I remember wondering if I was crazy to argue with her well-intentioned lead teacher, who thought she was perfectly fine. How could she be fine, when every time I came to pick her up she would be walking around in circles flapping her arms!

My daughter never gave them any trouble, so they didn’t notice that she wasn’t paying attention. I was so relieved when I had the chance to take her to the town preschool for an evaluation; however the were unable to complete the testing because she couldn’t stay still and concentrate. They didn’t think I was crazy, but rather thought that I should get some help to find out what was going on. The day I moved her into the next class at the day care center, the teachers were horrified to think that the other teacher thought she was normal!

I gave up practicing direct care social work when my daughter was one-year old. It found it too taxing and, after 15 years of giving counsel, it left me without enough energy to give to my daughter. In my career, I was so good at identifying what was wrong with others, but with my daughter, I assumed I was looking for problems that didn’t exist. Even family members thought she was fine and did not agree with me when I thought there could be problems.

With my background, I figured that I knew best about getting the services my daughter needed, yet it was too hard to think that there was something wrong with her. No one ever told me that life wouldn’t just work out once you got married, had kids, and moved to the ‘burbs.’ Meanwhile, my child was in the preschool program and I was content that she was getting help for her language-based problems.

We were very fortunate to find Dr. Daniel Rosenn, who tested her and diagnosed Asperger’s. After going to conferences for several years, I can now say the word, Asperger, without softening my voice, or yelling it angrily as if the word would make her a leper. I heard Dr. Rosenn give me the diagnosis, and I read his report several times. Finally, I knew I had to get the services for her.

I had slipped into denial thinking, “Well, she is getting help at school. That will take care of it.” My mother, to this day, keeps telling me she thinks her granddaughter is just like other children and that no one can tell. She says that when her little brother follows his sister around, it looks just like she is playing normally and no one would see a problem with her circling the yard while moving her arms in circular motions.

I have gone to AANE conferences twice a year to hear more, and been fortunate that my in-laws attended the grandparents’ workshop one year. I finally made my husband attend one conference and the look of sadness in his eyes said it all. I usually buy two or three books each conference and have amassed a nice library that I find too painful to read through completely.

What day did I accept my daughter’s Asperger’s? I am still accepting and understanding now. We can go from one day hearing her telling a friend on the phone not to be upset, to another day hearing her screaming in the park because a neighbor won’t let her help plant a bush because she was told she doesn’t know enough. Can I accept what I read about Asperger’s happening because of family genetics? My husband and I have gotten past this, as anger and finger pointing about who has the craziest relatives leaves us painfully isolated. I know now that there is nothing I could have done to prevent this (you know… maybe if she hadn’t bumped her head…) but I feel confident that I can read her and understand when she is confused, drifting off, or anxious. I know that I can help her understand these things, and that I am smart enough to make sure she gets the services she needs.

When she grows up… will she be self-supporting? Will she be happy? Will she get married? Or will I be like the happy mom I saw on 20/20 who was really glad her adult son with Asperger’s would always be living with her? I think what is important is that I will always be proud of the things she can do well, or pleased that she sometimes seizes more happiness from a moment than most people.

I know I will always be critical of a diagnosis which could limit her, but then she does seem to be limited by her difficulty with transitions. To ease my daughter’s distress, it has become second nature to me to organize each day’s activities around the degrees of simulation. I am a mother bear, on the constant lookout for the enemy (stress) which will hurt my cub. That is how I have to cope and that is how she will get the best out of me.