I was honored to be asked to share in this blog but after reading the other member’s bios about their children’s special needs qualifications I suddenly wasn’t so sure that I belonged here. My child doesn’t have a life threatening illness, major medical problems, or a birth defect. From the outside looking in we appear to be an “average” family except for a child that is often annoying, odd, and hyperactive but not overtly in need of special treatment. I often discount the challenges of raising a child with neurobehavioral issues since technically she’s healthy. Shouldn’t I just be thankful for that?
The reactions of the outside world don’t help with my feelings either. I don’t get much support with the exception of some close friends, family, and teachers. It’s easy to be supportive and empathetic towards a child whose disability is evident on the outside but a child who can’t settle down, interrupts others, or seems to lack patience is viewed as a product of bad parenting. I have certainly had my share of eye rolling, insensitive comments, and unsolicited parenting advice. The unfortunate side effect of this ignorance is that it increases our anxiety and can worsen my daughter’s behavior.
For many years I believed that my daughter’s behavior was my fault. She was my firstborn so I thought her behavior was “normal” and I was the one with the problem. If I parented her better then she would behave better. I read every parenting book and magazine I could get my hands on but no matter how well I followed their recommendations I never got the result I was “supposed” to get. I felt like such a failure and those who were so willing to point out what I should be doing didn’t help my fragile self esteem.
I eventually moved onto books about “spirited children” and for the first time I realized that my daughter’s behavior may actually not be ALL my fault. Around five years of age she was diagnosed with a Central Auditory Processing Disorder which helped explain a lot about some of her behavior. She was eight years old when we finally got an official diagnosis for the rest of her issues; ADHD, Tourettes Syndrome, OCD, and an anxiety disorder.
Breathe.
What a relief to know that there was a reason for much of her behavior and most of it is out of her control. She wasn’t a bad kid but had an actual medical condition. This knowledge was powerful and propelled me to educate myself on her conditions, treatment, and most importantly on strategies to not only manage her behavior but also how to set her up to be successful. What I remain powerless over is the reactions of well meaning adults who unknowingly give my daughter the message that she is bad or unworthy. This is why I have made it my mission to educate others in hopes of destigmatizing these disorders. It saddens me how many parents I know who keep their child’s ADHD diagnosis under wraps out of fear that their child will be judged, labeled, or stigmatized. With knowledge comes understanding and understanding nurtures support. I don’t want my daughter to be ashamed of her disorders. I treat her the same as if she had diabetes or cancer. She is also learning the importance of educating others. This past school year some classmates teased her about her tics so she took it as an opportunity to educate them about Tourettes. Her presentation was very empowering for her and intriguing for her class. She was promoted from “weird and quirky” to “special and interesting”. There was no more teasing the rest of the year. I realize it will not always be this easy but it’s a good start.
Most days my daughter is very sweet, loving, and cooperative. During those reprieves I don’t consider her to have special needs but within minutes she can completely disrupt our home with the mother of all tantrums or be so impulsive that I worry about her safety. Those are the moments when I realize that I have earned my right to call myself a parent of a child with special needs.
Kristie authors Slacker-moms-r-us, Lipstick to Crayons, and guest
blogs at A Wild Ride.