Young, Black and Aspie: A Mother Learns to Understand Her Daughter’s Asperger’s Syndrome
The next few years, I had to constantly discipline and chastise my daughter for not cleaning up after herself, daydreaming, losing homework assignments, gloves, hats and coats. I was on the verge of a nervous breakdown. By the fourth grade, my daughter could not button her shirt, zip her coat or tie her shoes without great effort. She didn’t have one friend her own age. The girls at school called her weird and stupid. Her only friends were between the age ranges of 50 and 75 years old. I felt mean and guilty because I would secretly wonder, what is wrong with you? Which made no sense because I already knew.
I knew it was time to accept reality and stop avoiding the issue. I finally accepted that something was wrong with my daughter and I knew the name very well. I made the decision to have her evaluated. The diagnosis was no surprise. My daughter had Asperger’s Syndrome.
By the time we got the diagnosis, things were bad at school and at home. My daughter was suffering and my heart was broken in a million pieces. As a parent, I was dealing with feelings of guilt and hopelessness. For years, I kept saying, it’s nothing; she will grow out of it. It took her little longer to walk, talk and do the other things kids did, but she will catch up. Her inability to do basic tasks were a result of gross motor deficits commonly seen in children with Asperger’s.
Acceptance
Deliverance would not come until I accepted the fact that I was not the reason she had Asperger’s, but I was personally responsible for making sure she got the help she not only needed, but deserved. It was not enough to say “behave yourself”, “be like other kids” and “focus”. I had to get over my own crap and help guide her. But, before I could do that, I had to accept that my daughter–the 9 year old published author who had written a business plan for her own company, could do advanced math in her head and had an encyclopedic knowledge of all things Michael Jackson had Asperger’s Syndrome.
I will always remember what she said to me the day I found the courage to explain to her she had Asperger’s Syndrome. I sat her down and told her about the disorder and how it wasn’t something she should use as an excuse not to do her best. It’s something she should be mindful of so that she can manage it appropriately. She quickly interrupted me and said, “Mom, I may have Asperger’s, but that doesn’t mean it has me.” My child is so wise.
I’d like to tell you that when she began treatment, things were immediately resolved. They weren’t. On the contrary. We had years of pain to work through. Things became even more difficult before they got better. Our relationship had suffered as a result of my years of poor coping and the toll from the constant bullying and isolation at school. I still harbored a lot of guilt over trying to force her to be normal because I thought that would be the easier path. At age 11, she spiraled into depression, became defiant and refused to listen to anything I had to say. Defiance is typical pre-teen behavior, but it’s even worse when your child has Asperger’s. I told her I erred in judgment and asked her to forgive me for what transpired when she was younger. After joint therapy and working through our issues, I believe she has.
I now research everything I can find on the disorder and share it with her. I’ve been diligent about ensuring she is getting the necessary treatment and no longer allow fear or shame to control my decisions. I embrace all that makes her unique and I am thankful that she is not like everyone else. Today, she is 15 years old and she is amazing. She is a high honor roll student and has improved socialization skills, but is still close friends with baby boomers. She is in a school with a supportive staff and her organization and gross motor skills have vastly improved as a result of occupational and cognitive therapy. I can’t tell you the joy I felt the day she learned to ride a bike. We still deal with bullying and rejection issues on a constant basis and it is a struggle for her not to internalize the intolerance of others, but I see her become more confident everyday. Most importantly, these days she smiles more than she mopes.
My daughter is young, black and Aspie. She is proud of who she is and so am I.
Resources for parents
http://www.aspergersyndrome.org/
http://www.amazon.com/Aspergers-Books-that-are-Godsends/lm/1J989FL0YRM3P
