Today's post is written by Joan Campbell, mom to a daughter with Asperger's syndrome. It's a beautifully written piece that highlights the frustrations, hopes and joys of raising an Asperger child. Please feel free to share the link and leave a comment to encourage Joan and her family.There is a cherub sleeping in our second bedroom. When she was younger, my husband and I would sneak in to her room and stand silently admiring her curled up form in the light filtering through from the passage. The roundness of her face and the small, full lips gave an impression of a lovingly crafted sculpture. A tumble of blonde curls framed the masterpiece.
She is older now, almost eleven, and yet I find myself still pausing and studying her face before I wake her up for school. It has lost some of its roundness, and the curls have straightened to a wave, but there remains something beautiful and innocent in that lightly freckled façade.
This habit of observing my daughter in sleep comes partly, I believe, from my desire to understand her better. In that brief moment of shared peace, I feel a connection to her.
When she is awake my child is a jumble of difficult-to-comprehend contradictions. She wins mathematics awards at school, but often stares at me blankly when I issue her an instruction. She will work on a puzzle for two hours, but refuses to talk to her dad on the phone for two minutes. She puts her fingers in her ears when she considers music to be too loud, but screams relentlessly at an ear-numbing pitch over the smallest of incidents. She melts into my hugs, but won't let anyone kiss her on the cheek or even play with her hair. She reads and re-reads (and re-reads) every "Asterix and Obelix" cartoon she can lay her hands on, but refuses all other book I try to introduce her to. She fearlessly goes on two-night Scouting camps without me, but is afraid to walk through the school parking lot without holding my hand.
The books and blogs attempt to explain her to me. Children with Asperger's syndrome, I read, are often very sensitive to sensory stimuli such as sound. They also tend to fixate on one or two topics, to the exclusion of others. I learn that, as with all the Autism Spectrum Disorders (ASD), they struggle with the nuances of communication, and find it difficult to understand expressions and idioms.
The latter has always been rather charming. My daughter has many "huh?" moments and our family conversations are peppered with delightful misunderstandings that sound something like this:
"He's really barking up the wrong tree, if you ask me."
"But he doesn't bark, does he, Dad?"
"Wow, you got out of the wrong side of the bed today!"
"I can't get out the other side the wall is in the way."
The articles continue to educate me on my child. Non-verbal communication is particularly difficult. Reading body language, which is so natural to the rest of us, is like interpreting a foreign language to a person with Asperger's.
I read about a concept called "mind-blindness", which means that children and adults with Asperger's struggle to comprehend what other people are thinking or feeling. It makes them seem as if they lack empathy, and is one of the reasons they battle with social relationships.
All this information educates me, but doesn't allow me the one thing that I really crave: to crawl right into my daughter's mind for a day, and view the world through her eyes. I yearn to understand her thoughts, feelings and reactions.
Yet, ironically, it is in not understanding that I am the closest to her daily experience. For her, people's words, behaviour and expressions often elicit perplexity, the way her behaviour does for me. I gain a measure of insight into how disconcerting it is to struggle to understand somebody.
In my frustration and occasional guilt at my lack of comprehension, I have never once wished for my daughter to be in any way different to that which she is. She is complicated, fascinating and funny in her directness. She has many moments of brilliance and surprising insight. She is determined and focused and like many people with ASD, I believe that her persistence will lead her into a bright future.
Much like a real angel, she is often a mystery to us. Yet, just as the Sculptor carved the perfect lines of our daughter's face, He also carved her beautiful soul and spirit.
We delight in her.
22 Things a Woman Must Know if she Loves a Man with Asperger’s Syndrome by Rudy Simone is an invaluable resource for women dating, or married to a man with Asperger’s. Divided into 22 chapters, it is simple to read and easy to understand.
