COMING SOON!
Why Don't They Come With Instructions?is a collection of personal essays about one mother's journey parenting two special children. Jan is the mother of a nineteen-year-old daughter who has learning disabilities, anxiety disorder, Obsessive-Compulsive Disorder and Tourette's Syndrome and an eleven-year-old son who has attention defecits, major anxiety and Asperger's Syndrome.
The book will be published by StoneGarden.net Publishers and will be available August 2010.
I am busy working on book number two and a series that will be published in 2011 ... stay tuned for more information.
Here is an preview of my upcoming book:
There’s no way I’m getting on that Ferris wheel–I live on a Roller coaster!
Life has been full of such ups and downs that I feel we are riding a roller coaster. Recently we visited Calgary, Alberta and went to Heritage Park. The youngsters wanted to ride the Ferris wheel. The four of us stood in line until our turn came. I chickened out at the last moment, so John rode between his sister and dad. I sat at the base of the Ferris wheel, camera in hand, as my husband and children spun around before my eyes. Backing out on the ride gave me a few minutes to reflect on writing these essays.
Getting a diagnosis for my son was not an easy thing. What he struggled with was overwhelming and very much a mystery to us. How did I explain the symptoms to a provider when I didn’t understand? It was so trying.
The comments from people were tough to take. But even worse were the comments from my family. “He just needs a good old-fashioned spanking” and “This generation lacks discipline.” I could see my parents and grandparents thought I was failing as a parent, but at the time we didn’t know what was wrong.
My son would get so frustrated. He’s always had this intense need to feel safe. He has always been very clingy, and is a real mama’s boy. Since my first child was a girl I didn’t know what to expect with a boy. I just thought it was the way he was supposed to be. Remember, I never received that instruction manual on how to raise children.
At times John would get so frustrated he would pull his hair out and gently hit himself on the head. He has always had a hard time expressing his feelings. I’d ask him what was wrong and he’d say, “I’m running away.” Or “I’m going to live with someone else who can love me.” I loved him so much; how could he be saying he needed to find someone else who would love him? It was tearing me up inside. During these times he even left the house. I had this fear he would be picked up by the police after being seen pulling his hair out while wandering down the middle of the road.
Our roller coaster keeps lurching forward and we ride up and down and around loops. One day would be fine, the next major meltdowns. How do you live like this? We’d visit the doctors, they’d prescribe medications, and we’d go home with new hope. It was a hope of being able to climb off the roller coaster—of living a more normal life.
I tried to console myself by remembering that nobody’s life is really normal. I recalled my graduate course in abnormal psychology—we all thought we had disorders as we made our way through the textbook.
So what if my son has strange obsessions, wild fears, and major meltdowns? It is not caused by bad parenting. It is instead his mind’s inability to see the world as so-called normal people do. There have been innumerable times in my life when I didn’t understand the world. I’ve learned that his brain comprehends the world around and inside him very differently. Asperger’s Syndrome allows him to see and experience life in ways others are not capable of. He feels things more intensely: textures, sounds, and tastes more powerfully. Healthcare professionals have promised me, “When understood well, Asperger’s can be seen as a great gift.” I’m longing for the day when this is true.
For now, we are still on the roller coaster ... with its ups and downs. John is just entering adolescence. He still has a great deal to learn: he still has difficulty with friends and being in large groups or other social situations, still says strange things at the strangest times, and often obsesses about cars, racing, baseball statistics, etc.
The more I learn about Asperger’s Syndrome, the more I realize that I was a child who lived and grew up successfully despite my undiagnosed problems. I just taught myself over time to work around my deficits even though the world didn’t often make much sense to me. It still doesn’t make sense sometimes and I still could see myself becoming agoraphobic and living in my room forever.
I know we will be on the roller coaster for a little while longer. I continue to be so proud of my little guy for getting on that Ferris wheel. He is really growing and learning to do the things he longs to. It has been a struggle. He will watch activities but rarely join in. He was even worried about going to his best friend’s birthday party. It helps to have a big sister and big strong Dad to lead the way. Maybe someday I too will be ready to get on that Ferris wheel.
