To Walk in My Son's Shoes
by Merely Me
Wednesday, June 03, 2009
Quinn's Guide to Friendship, Dating and Self-Confidence
I have often wondered what it would be like to get into my son, Max's head, and live there for a day. What would bring me joy? What visions would occupy my daydreams? What sights and sounds would entrance and which would frighten me? And how would I cope with the seemingly endless frustrations caused by his multiple learning disabilities?
The truth is that we can never fully understand what another person is going through. We are pretty much stuck with the bodies and minds that we were given. But recently I have been given an opportunity to better empathize with some of Max's challenges, especially with regard to speech and language.
Max had speech therapy for more years than I care to remember. It is common for children with Autism to have communication challenges. In Max's early years he did not talk at all. He made sounds for several years which would form the occasional word. Speech therapists told me that he had Developmental Apraxia of Speech which simply means that he lacked the motor planning skills to produce the series of movements of the tongue, lips, jaw, and palate which are necessary to speak.
We basically had to teach Max to talk from scratch. Many of us take talking for granted but it is a very complex system of information processing, motor movements and planning which allows us to utter a single word. Early on Max was unable to do the simplest of oral movements including blowing bubbles or sucking from a straw. If you ever want a challenge try to teach someone how to perform these skills who has no concept of what you are asking them to do. What is effortless for most children was painstakingly difficult for Max.
As a parent it was very emotionally draining for me to see my child struggle to speak. For years I witnessed the tears of frustration from my son trying to communicate and not finding the means to do so. I have accompanied him to many therapy sessions where a gloved therapist would manipulate his mouth into the various formations of speech. We have used multiple communication systems including picture icons, sign language, and electronic talking devices. All of this intervention finally paid off when my son did learn to speak.
Although I have been right there with my son as he has learned to talk, I never fully grasped what my son was up against until my diagnosis with Multiple Sclerosis.
I will never forget the day when I first experienced losing my speech. Although my symptom only lasted several hours, I felt frightened and traumatized by the experience. Max and I were out and about at a park on a hot summer day. I had not known that heat can exacerbate Multiple Sclerosis symptoms. I had assumed that most of my symptoms would involve the physical movements of my limbs. I was wrong.
I remember trying to stammer out words and having them feel like marbles stuck in my mouth. My mouth simply would not move as I wanted it to. A slur of sounds escaped and I sounded intoxicated. In order to get the words out I had to exert much pressure. Max was beginning to trot down a path ahead of me and I struggled to get my message to him, "W-w-wait f-f-for MOMMY!" It was like a dam burst on the last word and I yelled it much like a radio announcer. Max giggled at my attempts to communicate. I can't blame him. I would have laughed too if I were not so scared.
Learning Disability Resources, Tips and Tools