June 26, 2010

Advanced Communication

When your child cannot speak or communicate fluently, as with our daughter Dani who is deaf and Autistic, you learn to capitalize on the few clues she offers. Like most parents we watch for subtle cues that signal how she feels and uses them to learn her likes and dislikes.

As an example, when Dani walks with one knee locked like a pirate, we know she's in a really good mood. In fact, we call her Peg (as in peg leg) when she walks this way and it never fails to give us a kick. Other hints that indicate she's happy include her cooing like a dove, wanting to be hugged, and a peaceful look on her face like this one at her Day Hab program.

Seeing her perched in this chair proudly wearing her lei warmed my heart the instant I saw it because it revealed she was happy and content. As much as she hates having her picture taken, she's clearly calm as a cucumber in this photo, which is quite a feat considering the fact here at home she cries at the first sight of the camera. To us this picture is a modern day miracle.

Deciphering subtle forms of human communication is a skill common to nearly everyone. A heavy sigh or the tapping of one's foot means they're bored or growing impatient and a wandering eye amidst a conversation most likely means you've worn out your welcome. These and a host of other indicators are but a few delicate forms of communication we each give and receive on a daily basis.

Parents of children with communicative disorders, however, are a unique breed. Drafted into the most challenging and advanced course on communication the day our special children were born, we are forever hunting for better ways to understand and interpret our child. Communication boards, sign language, blinking, pointing, and grunting are but a few things we accept as valid forms of communication. It may make no sense to anyone else on earth, but if it conveys a message to us that's all the counts.

That's why many years ago I adopted the philosophy that says if a doctor, teacher, therapist, or caregiver of Dani refuses to listen or work closely with me or my husband, we drop em like a hot potato. After all, who can read Dani better than her father and me? How many folks have taken the crash course in Dani 101 and passed? No amount of education can override what we have learned these 21 years and anyone who thinks it does couldn't possible have her best interest at heart. Fortunately, we've encountered very few professionals who disregard our input, but the few times it's happened left an indelible mark I'll never forget.

With this in mind I encourage you to trust your instincts and stick by your guns. No one knows your child like you and anyone who thinks they do couldn't be more wrong. When it comes to reading your child you are an expert. You hold an advanced education few others have and your specialty is your child. Listen to your gut, do what you feel best, and years down the line you won't regret it.


Cheryl Barker said...

You are so right, Nancy -- even for those of us whose children don't have communicative disorders. No one reads a child like her parent...

Anonymous said...

Ditto! Couldn't say it better myself, Nancy!

;) Barbara