I can remember that I was living so deeply “in the forest” this year that I did not “see the trees” I was so deep in concentrating on Elizabeth’s sensory needs, her therapies and their follow-ups at home as well as our older daughter’s needs and well...LIFE that I don’t think I looked up to take full notice of that changes in Elizabeth and some of her new growth. “Michele, she needs her own social group. Elizabeth is such a social child” That was the direct quote from our first speech therapist when Elizabeth was four years old. Kathy was her name and I simply trusted her completely. She explained how Elizabeth would follow and attempt to engage the children who had appointments before and after hers and how Elizabeth looked so happy being with other children. I remember taking a moment to let her words sink in and during this moment I wondered if Kathy WAS right...was I so busy doing “life” that I did not notice? WAS I so busy getting from day to day that I simply did not have the time to see that this was the next step for Elizabeth? Sometimes when you are dealing with the special needs of your child, you can forget the “typical” needs they may have.

I found myself quite thankful for our therapist for a new reason. At this time, we had been on our journey for about two years, maybe a bit more and as such, so much was new to us. But the one thing I realized for the first time then and truly countless times since, is that the therapist can become a dear friend to you and your child. And as such they can have opinions and ideas for and about your child that can be very helpful. They can teach your child things you cannot, and expose them to ideas you don’t have the ability or brain space to figure out how to do. This is a good thing...no, this is a GREAT thing. Listening to Kathy made me think of this thing called socialization....So much socialization takes place in the school or preschool setting....Social skills are being learned and mastered and one of the key pieces of socialization is the ability to talk. Which Elizabeth is working hard to do. It is the sharing of feelings and thoughts. This is not such an easy task when words are at a premium, clarity is questionable and sentences still remain a future goal. I heard what Kathy said, filed it away in my “ Look into it soon” category and started to look.

The preschool hunt was on but it troubled our hearts that the words said by our daughter were coming but they were still half words and if she was stressed, there were no words and if she had fluid in her ears, (which we began to battle as long as 2 years ago), there were only unrecognizable sounds. There seemed to be a piece that was needed. We visited Mary and she discussed our need to work on the muscles in Elizabeth’s mouth not so much the oral stimulation as we talked about last post but to add in muscle work...kind of like a gym workout for her mouth. This was to help address the dyspraxia, which was why Mary showed us the bite gradient sticks from TalkTools and told us we were to try to use these to help strengthen Elizabeth’s jaw. She told us how to count to 10 while Elizabeth bit down and then to have her stop and then repeat. This was quite the undertaking as sensory issues always played a part. But we were able to achieve the goal.

Mary also had us working on using a tiny circle, called a lip block, that we were to put on the end of Elizabeth’s straw to keep her from putting the straw so far in her mouth that she was sucking on the straw without using her lips to create the seal. Therefore we would be working the muscles in her lips and how she used a straw each time she drank. Please note at this point, two important facts. Number one, Elizabeth absolutely never drank without a straw and so, number two, Elizabeth grew to hate the little circles. I bought several so that if they were to “mysteriously” disappear another one would magically appear. It was the battle of the straw circles, I smile as I think of her spunk regarding these lip blocks.

But as were doing these things we were strengthening those muscles that helped make CLEAR sounds then CLEAR words.... Mary also had us use some time each day to look at and talk about facial expressions. To help her see and talk about feelings associated with the faces. When you have been afraid of life for so long as Elizabeth was....and when you can’t hear as clearly all the time, it is difficult to discern emotional expressions. It was kind of fun doing this with her. To play act the emotion. And it helped Elizabeth to talk about feelings and emotions and to know that EVERYONE feels all the things that she feels.

These additions to our already rather full follow-up therapy schedule was hard, we were already working on a number of things so adding more was difficult and the very fact that we needed Elizabeth’s cooperation to accomplish these new ones made it difficult Elizabeth was still being brushed to help with her SPD and she appeared happier than ever but.....those sensory issues can rear themselves when she is stress and I can remember quite a few tears as we worked our way through these new sessions. But what kept us motivated was knowing that what we were doing was not just teaching her newwords but helping her mouth and its muscles be stronger for life.

Dyspraxia and these sensory issues just do not let go....but we now had a plan to address this oral component of her dyspraxia...we had new and a bit tougher work to do and we had the idea placed in front of us that preschool may be a good fit for Elizabeth. Quite of few new things are in front of us on our journey...the path twists and turns a bit but we are seeing good things...our journey continues......

-Michele

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.

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.