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The signs of progress

The Kluge center for Children in Charlottesville, Virginia scheduled Matt for periodic visits. They were scheduled about a year apart and the purpose of these visits was to track Matt’s progress in all areas included in a skills check-list for age appropriate skills and behaviors. Matt was still not talking on his first visit back after his initial diagnosis the year before. The therapist tried to get Matt to speak. He did not comply. His only language at that time consisted of “no”, “yes”, “water”, “drink” – Matt was now 4 years old. The window for speech ability was going to close within the next year. His therapist was very concerned.

 

 

Being able to say a few words is not the same as having speech. Speech is a form of communication and Matt’s communication was still mostly grunts, moans and body language. It was time to put in a back-up plan just in case the next year he remained at his present level of talking. The therapist instructed me on how to use sign-language and had me practice. Signing provided me a new way to communicate and I embraced it. I practice several signs and used them on Matt every day. He didn’t like watching my hands and had no fascination with my gestures. I slowly realized that sign-language was not going to work. Still, I kept at it. I wanted to talk to my son and I really didn’t care if it was through signing or speech. My favorite sign, and the one I used most often, was the one for “I love you”. You extend your thumb, index finger and pinky finger upward while keeping the ring and middle finger bent. Each night at bedtime I kissed Matt and said “I love you” both in words and in signing. I found it difficult to tell whether or not he made the connection. I found out later that he had been watching, listening and learning all along.


 

 

Although Matt was not doing age appropriate behaviors, most of his skills were higher than average for his age. He had a few skills that were deceptively low-level, like not knowing how to use a key in a lock.  You have to look at the whole grading system to understand why he failed. You see, the lock and key test was sprung on him during his Kluge Center visit. The occupational therapist gave him a key and set the locked box in front of him. She then began timing him. He had never even seen a lock or a key, and he had no curiosity about what was in the box. After several minutes she secretively marked her grade sheet. “Did he fail?” I asked. “Well, he didn’t even attempt to open the box and never showed any curiosity.” She stated back. “Matt can do that trick” I countered, “give me the key.” She politely handed me the key, placating the hysterical parent. “Matt, watch this!” I said directly to Matt as I sat on the floor beside him. Matt watched as I put the key in the hole, turned, open the lock, opened the latch and open the box. I picked up his toy car he had brought with him and placed it in the box. I shut the lid, flipped down the latch, and put the lock back on. “Listen” I said as I clamped the lock down.  We listened.  It produced an audible “click”. Matt watched the whole sequence. His car was now in that box and the box was locked. I handed him the key. Matt put the key in the hole, turned it, open the lock and removed it, flipped the latch and opened the box to reveal his beloved possession still intact. A wonderful smile lit up his face. He was genuinely relieved and now fascinated by the lock and key. “See?” I said to the therapist. She looked at me as if I had just spit on her. “He was not able to do it without you showing him . . . “ she trailed off. She never changed her grade sheet. Matt had low scores from her and high scores from each of the other 3 therapists.


 

 

This first visit back had really gotten under my skin. I was ready to use the sign language, but I was unwilling to accept that Matt lacked thinking skills. I became aware that people would judge my son on his ability using particular tests that were unintentionally misleading. People would always use his diagnosis to assume Matt was mentally incapable of learning – that is unless I made it a point to teach them differently.


 

 

It was during this same year that Matt learned the alphabet without anyone knowing. I practiced the alphabet on the glass of the back door – writing in the frost. The first few weeks Matt just scraped frost onto his fingers, fascinated by the cold of the door. At school the class went over the alphabet each morning. Matt would dive under a table and put his hands to his ears as everyone did the alphabet together. His teachers assumed Matt was off in his own little world, refusing to pay attention. His teachers soon found they had made a false assumption. Matt was listening and using his split-second glances at the board to connect the letter with its name. Matt was under the table yes, but he was learning.


 

 

Within weeks Matt was writing the alphabet in the frost and writing the alphabet on paper in school. His repertoire of words seemed to jump from 4 to 20 - 30 in no time at all. Matt’s brain was healing and he was beginning to show us signs that he was capable of making connections again, both figuratively and literally. He began to speak more and more. I was finally sure – absolutely positive – that he would eventually use sentences to communicate and so, I stopped using sign-language – that is except for “I love you”.


 

 

To this day, 20 years later, we give the sign for “I love you” whenever we part, whenever we say good-bye, and sometimes just for the heck of it. It has become a symbol with a much deeper meaning. Each of our children knows the sign and has used it, but for Tom, Matt and I, it is part of our everyday language and behavior.


 

 

A few days ago we again hiked another section of the New River Trail. Each of us had in earbuds listening to our own musical preferences on our MP3 players. I was out ahead and looked back to find Tom taking pictures – he was quite a ways back. Matt looked at me, then at Tom, then back to me and shrugged his shoulders. I held my hand up indicating stop and wait – Matt stopped. He looked again at Tom and back to me with a big smile and flashed me an “I love you”.


 

 

Not a word needed to be spoken. 

 

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