Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Dear Therapist,

It was about this time last year when my son and I walked in to your clinic. I was scared and frustrated that my son was 2.5 and losing his ability to speak. There was a time when we counted dozens of words, and then as quickly as he had them they were gone. At the time we met you, he was babbling in his own language we referred to as Alien and he said one word “Dada”. As a mother I desperately yearned to hear him say Mommy, and I wanted to hear him say I love you. As we went through his history, I had a brief understanding of Childhood Apraxia of Speech. You were thoughtful and broke down to me what it meant for my son. His brain was sending the messages to his mouth, but due to poor oral awareness coupled with his inability to use his tongue he was severely Apraxic. I had been thinking for months this was the case, and I was scared of what it meant. Other therapists we had met had told us he may never speak, and I just wanted to know that you believed he could speak. I’ll never forget that you told me the success you have had with children with this disorder, but you were clear this would take years of therapy to help him gain his voice.

We dove in to therapy, and those first few months were really, really hard. Von made no progress. He didn’t let anyone near his mouth, and he still had no words. We kept on working the flashcards, and working on helping him learn sign language. Over a few months he learned about 10 adaptive signs that enabled him to have a voice and make choices. Eventually he started to say a few words along with the signs, and we were seeing his entire world open up. At the eve of his 3rd birthday, a verbal explosion took place. Out of no where he started speaking. Not only did he start saying individual words, but he started saying full sentences. He went from having no words to talking in sentences. It wasn’t always clear, and the words were often hard to understand but he was talking.

When he started talking, we realized he was incredibly smart. For a few years the testing that was done was marking him as cognitively delayed. His doctors were discussing that he may have a low IQ, and his files with the state and the schools all listed him as Developmentally Delayed.  In all the research I did about children with those type of delays, it did not seem to fit him. When he started talking, we all realized just how wrong the previous screenings had been about his intelligence. Within in weeks, he was identifying colors, shapes, and letters. He was able to classify different types of animals, vehicles and  dinosaurs. What I realized is that for 3 years he was listening to everything we were telling him, and he was storing that information. He knew all of it, but he didn’t know how to show us he knew what we were saying. Suddenly his entire world opened up. His Developmental Pediatrician who once worried he was Low IQ told us he actually had the cognitive skills of a 5 year old.

My little boy was often scared of other kids. When he couldn’t speak, he would quietly play by himself. He rarely acknowledged other children, and was awkward and shy. When the words came, so did his big personality. He would walk up to children he didn’t know with a huge smile on his face. At restaurants he would wave and excitedly say hi to any person that walked by. It was in this time we realized what a happy and sweet little boy he was and the love he had to share with everyone. At home he would proudly walk around and spout off the names of each of the cats and the dog. He would walk up to each of them, say their name and give them a hug. It was if his entire world opened up and he just needed to acknowledge to every one he had arrived. He developed relationships with our friends that have become very special. He’s been able to make friends and have a more typical childhood. It’s truly amazing what happens when a child finds their voice.

Thank you for working so tirelessly with him as he struggled to find his words. Thank you for continuing to help him sculpt his words. Our challenge was we just didn’t know if he could speak, but we all believed he would try. Your willingness to meet him where he was at, and help him with a therapeutic plan that worked for him made the difference. You have taught me that you don’t need to have a specific label or name for the therapy you implement for a child. We learned we just needed to meet him where he was at, and give him the tools and comfort to be able to speak. We still have a long way to go to help him with his clarity. However, we all know he will eventually get there. The greatest blessing in all of it is that we know his voice is no longer locked inside of his head. We all know that we should never underestimate his abilities. It has given us hope for the other areas of development he still struggles in. Nothing seems impossible anymore, and it’s all because you helped him find his voice. Thank you for believing in him. Thank you for helping us understand his disorder and giving us skills to help him. Thank you for helping him find his voice.

Sincerely,

A grateful Mother

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