The words did start to come but they were words that required a great deal of work to understand or as in the case of many, they required me to translate. I remember how it was to automatically have the person to whom Elizabeth was speaking turn to look at me as if to say “ WHAT is this child trying to say?” I would of course translate and all would be well. But what I wanted to know was why the words were said halfway or why she would mumble.
I guess I thought that once we started speech therapy it would be like a dam opening up and “Voila” we would have words, sentences and thoughts…in other words, all would be well and we could get over this thing called a “speech delay” and move on.
We were new to this therapy thing…in fact since we had started occupational therapy, it was like we were waiting for SOMETHING to simply fix the problem. The problem being her SPD and dyspraxia.
“Ahhh, so much to learn” is what my current self wishes I could tell my former self. “Be patient” is another, “Settle in for a marathon, not a sprint” is the third but the most important thing I wish I knew at the beginning of this journey is “ There is no FIX as Elizabeth is not BROKEN, just wired differently” Had I not been looking for a fix so much, I might have been able to adjust my reality but it was like I was just waiting for the “Ah-ha” moment, the thing that would set it all right” Alas, so much time and thought wasted….
We were blessed to find Mary, our still beloved speech therapist, who works on the SPD and dyspraxic issues with Elizabeth. Mary explained that Elizabeth’s dyspraxia affects all of her muscles and motor planning including the ones used to make breath, make sounds and words. I did not know this and once I did it all made sense. That is why the mumbling, that is why it is such effort for her to talk. I finally understood.
One session with Mary elicited a seven page list of things to do to help Elizabeth with her dyspraxia and SPD. A brushing protocol every two hours, exercises to help with balance, lotion rubs. And many things for her speech.
This appointment with Mary was life changing, the brushing protocol was one of the things that made the biggest change in Elizabeth’s life. We stuck to the protocol and as we did, the calmness and peacefulness came. We had made some headway before, but this protocol by far made the difference. As a quick side bar here, we brushed Elizabeth every two hours, everyday, while awake, for over two years….that is how much this protocol helped her!
I learned about a thing called “oral stimulation” As I learned we needed to stimulate certain areas of Elizabeth’s mouth to help her learn to feel those areas and to help her use this new awareness to get her to move those oral muscles and make words.
We used a special brush called a NUK brush. It was a special soft bristled brush, used in non-therapy settings to clean an infant or young toddler’s gums and teeth. But used in this therapy setting, it created an awareness of her mouth. We were to try getting Elizabeth to do blowing exercises to strengthen those muscles and instead of my usual filling in the blanks of each half said word, I was to do it with verbal highlighting. For example, if Elizabeth said “ I wah…” I was to say “ What is it that you WANT?” Thereby helping her to think of what she wanted and also to hear the word she said halfway, said in completion.
That was a very new way for me to do for Elizabeth as I always just said things for her. One of the things that this journey was teaching all of us is that the way we used to do things is no more…there is a new normal now. This attitude became the prevailing one in our house, as we all learned to do everything with a purpose. Meaning we began to look at all the things we did in a day and see how we could incorporate some sensory or motor benefits for Elizabeth. So pushing in the chairs at the table….sensory input,marching up the stairs…sensory input, pillow fight…motor planning…
Once you get in the mindset, therapy can happen all day without it being THERAPY!!! You can accomplish so much more this way and the child can see it as play and you can be happy because there is a hidden benefit.
First we saw the beginning of words…now we have a more complete picture of Elizabeth’s needs, a wonderful new therapist at the helm…and a new therapy plan made to address ALL of Elizabeth’s needs. I think we may just now have stepped onto the road that will get us to the next goal….I cannot wait to walk on it.
-Michele Gianetti
Michele Gianetti writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder. Follow her story since the beginning here.