Let's start at the beginning. Sam as an infant and toddler was absolutely adorable, if I do say so myself.
But there was something I noticed about Sam. He was a quiet baby. Sam was my third child and at first I thought he was just such a content baby that he didn't need to make all that noise. But then I noticed Sam didn't babble like my other children. His only sounds were grunts, groans, crying, and some sounds that sounded more like animal noises than speech expressions. Of course he did have one speech expression. Sam could say "Da Da". I was hoping that my third and last child would be the one to say "Ma Ma" first but once again I was chopped liver.
In Sam's earlier years I hadn't really processed all the information I received on his brain injury, honestly, when they explained the diagnosis in the ICU, I was a wee bit stressed (go figure) and I didn't know they were telling me about a brain injury, I thought they were still referring to his diagnosis of Down syndrome. I do remember them saying that he will be delayed in speech or may never talk. Really??? I couldn't grasp the concept of not talking. From all the books I had read it seemed children with Down syndrome could talk...maybe have difficulty with pronouncing things but they talked, didn't they? I mean Corky on "Life Goes On" talked pretty clear. Yes, that was my real reference to Down syndrome when Sam was born. Oh, what a naive, new mom I was. I quickly realized that although Sam was my third child this experience was going to be like becoming a "new mom" all over again.
So my first dive into speech therapy was in our state's 0-3 program where Sam was evaluated as non-verbal. I loved our therapist Cindy, but Cindy was very worried about how Sam ate and drank long before we started to worry about speech. Truth be told, she shared with me many years later that listening to Sam eat and drink on our first visit together really frightened her. That's when the S-studies began, swallow and sleep or as I like to say "sleepless" study. Sam was not swallowing well, another new label (oh yeah!!) of dysphagia or in lay men's terms "late swallow" was added to the mix. All of Sam's liquids had to be thickened, I wish I would have known that before the two bouts of pneumonia, but sometimes that is how we learn and believe me I was quickly learning.
We also learned that Sam did not chew, he swallowed everything whole. This trait may have helped us later down the road when he had to begin swallowing supplements with apple sauce but early on it was not a good trait to have. At about this time Sam was also evaluated by NACD and my journey with oral motor therapy began. I soon became educated on the fact that we had jaw strengthening, tongue retracting, muscle stimulation and so many other areas we needed to work on before we would get to speech. I spent countless hours putting food on Sam's back molars and having him watch me chew. I couldn't even count how many times I have been bit. Then we had bite blocks, straws, horns, feather blowing, trigiminal stimulation, flavor stimulation. I went through more Nuk brushes and Z Vibe tips than I thought was possible and honestly I had never heard of or knew what a Nuk brush or a Z Vibe was until I had Sam.
My simple worry about articulation and pronunciation had taken on a life of it's own. Ellen Doman explained it to me best when she said, "In order to articulate words and sentences clearly a child needs to have accurate enough tactile processing to feel where the lips and tongue are positioned. A child has to have enough jaw tone to close the sounds. A child has to have enough tone and tactility for the brain to feel the difference between the jaw and the tongue. Lastly, the child has to be able to accurately process the tones of your speech to produce the words back to you correctly. "
It was during this time that I began to meet other families and other children with Down syndrome. I knew in my heart that I should not compare Sam to other children, but I couldn't stop my brain from doing just that thing. The first child I met was younger than Sam and she was already speaking in two to three word sentences while Sam was still working on sounds. I put on my brave face and commented to the Mom how beautiful her daughter's speech was and she said back to me, "Thank you, but she has such a long way to go". I wanted to cry, I did cry when I got home, in the shower, my favorite place to hold my own personal pity party without anyone hearing my heart break in two. During this particular break down I remember sinking further thinking that Sam can't even keep up to other children with Down syndrome much less his peers. It hurt, it hurt me to watch my child struggle to make a sound, to spend hours of time on face to face alphabet, oral motor, jaw strengthening and so many other activities to just help him make a sound, much less a word. I couldn't wrap my mind around why speech was so difficult for Sam and so easy for other children, especially other children with Down syndrome. I tortured myself envisioning these other parents saying a word to their child and them repeating it back, maybe even having conversations. The conversations may be somewhat limited but they were conversing and I was killing myself trying to get Sam to make a sound. I was mad at God....again.....why did Sam's speech have to be so difficult. I told him again he had chosen the wrong person, this hurt too much.
And yet...it was at this time, when Sam was 3 years old, that he began to read. He could not say the words but he knew them and could hand them to me. The darkness receded, I thanked God for this blessing, I apologized for my lack of faith and I continued on.
As Ellen said above, "Lastly, the child has to be able to accurately process the tones of your speech to produce the words back to you accurately." This was yet another hill to climb in our journey to speak, Sam was diagnosed with a bi-lateral conductive hearing loss at the age of 7. To read more about this journey go to my post "To Simply Hear".
I would love to say at nine years old that Sam speech issues are resolved but that continues to be a work in progress, but I can tell you he no longer has any food issues. He can eat any texture, any food and his liquids are no longer thickened. Sam is no longer non-verbal, he knows and can say hundreds of words. He has cued speech...meaning if he wants something, he can say "I want water please" sometimes he'll even add "Mommy dear", but the speech is a memorized pattern or chunk and not really spontaneous. Sam and I have conversations although I fill in many of the words or have to script his response. Which leads me to the title of this post.
I have spent 9 years trying to pull speech out of Sam. Sam is the kinda guy that will take the easy road if it is offered. I picture in his mind, him saying, "Well, if you don't expect me to do something or you don't think I can I'm okay with that and I simply won't". When I am working with Sam on speech I always have a white board and marker with me. Right now we are working on the "W's", who, what, where, why. I put a sticky note on something in the house such as Dad's jacket. Sam has to find the item that has the sticky note with the "W's" on it. I ask him, "What is this". Sam's answer, "jacket". "Who's is it?". "Daddy's". "Daddy's what?" "Daddy's jacket". "Where would he wear it?" Sometimes I get "on" or "outside". "Why does he wear it?" Sam doesn't always get the why but has answered, "cold". Now if Sam answered incorrectly, I would give him a word bank to choose the right word. Sometimes Sam has word retrieval issues, he knows what he wants to say but he can't seem to retrieve the word to say it. He sees it on the board and says it. To work on longer replies, I script his response. To the question, "Why does he wear it?", I might script "Because it is cold outside". I would then ask Sam to read the sentence and I would act as if he said it with the reply of, "You're right, we wear our jacket when it's cold".
If Sam is in a good mood and seems tolerant of working a little harder, I bring out the "dumb blonde" routine. Sam will ask me for water. I will look at him with a frown until he says, "I want water please." I then say "OOhh, you want water?" "Hhhmmmm, water???" Sam will look at me with his head tilted and say, "Mom, kitchen". Again I look at him and say "Yep, that's the kitchen". Sam will say "NO, water kitchen" I'll say "The water is in the kitchen?". Sam says "Yes, go". I will look at him and say "Go where?" He will say "Mom kitchen water" and I might even get a go. I might then script, Mom, go to the kitchen and get me water. After Sam reads it I repeat it and say "Okay, let's go". I have done this with Sam a lot and enjoy his reaction. One memorable time was when I was sitting on the couch and he wanted me to go outside. We were working our way through the conversation, pulling out more and more words, when he grabbed my face with both hands and said "Mom, focus".
I will leave you with a thought provoking quotation:
"Run your fingers through my soul. For once, just once, feel exactly what I feel, believe exactly what I believe, perceive as I perceive, look, examine, and for once; just once, understand." ~ Oscar Wilde
It is my hope that as I continue on this journey with Sam, I always, always keep this in mind and understand.