Goals.

My wish list.

Two things that I have carried with me since Elizabeth was born. Actually, more like since the minute she was diagnosed.

Goals and my wish list.

I have carried these things around like two best friends. I checked in with them often, planned things around them, and happily checked things off of them when Elizabeth did something new.

They have never left me in all these years, and I feel, if I am being truthful, that they will probably always be with me for Elizabeth. But they have changed shape, that is for sure:

• - I just hope she can say the last part of her words.
• - I want her to get the chance and try to go into this class room.
• - I hope she will talk to some kids on recess.
• - I want to work with her on her writing.
• - I want her to learn to text her friends.
• - She needs to learn to sign her name in cursive.

Yes! It has changed, but the one thing on the list that continues to be there after each flip of the calendar year is her speech goals.

Speech is this inherent part of Elizabeth needs. Her dyspraxia is quite severe and as such we have fought long and hard for any and all gains in the speech realm. 

But with dyspraxia, those goals took extra work because those with dyspraxia form habits very quickly. Be they good habits, like saying a word correctly, or bad habits, like misarticulations. Well, these bad habits are SERIOUSLY hard to break.  It is like once they are formed, they become so strong!  So we learned to learn things correctly the first time. Perhaps we learned this a little late in the game but we learned it nonetheless.

Speech Goal #1

So back to the goals and wish list… right now in Elizabeth’s speech life, we are working on social speech. The kind of thing that requires, among other things:

• - Thinking about what someone said.

• - Answering on topic.

• - Staying on topic.

• - Allowing everyone a turn.

The dyspraxic mind typically has trouble with organization of thoughts and information, so these goals are kind of tough for Elizabeth when she is stressed or too much is going on in her life. Someone will ask her a question about X and she will answer about Y. I know why it is happening but the poor store clerk does not. So we talk to her a lot about focusing and staying on topic.

Speech Goal #2

Another fan favorite on the goals is for her to OPEN her mouth when she talks. For her, any anxiety shows itself in her talking as if her teeth are glued together. Try it now. It is very hard to be understood this way, and that is for those of us who do NOT have dyspraxia, so imagine how hard communication is for her. So she hears plenty of “Open your mouth, Elizabeth, breath and talk.”

Yes, I am sure she is having a ball with me on those days.

Speech Goal #3

Directly related to the above goal is the new addition of singing lessons for Elizabeth.  She loves, loves, loves music and loves to sing, so we contacted a wonderful lady to work with Elizabeth. It is not just singing, it includes:

• - Muscle work for her jaw and mouth.

• - Deep breathing exercises.

• - Focusing.

• - Projecting her voice.

• - Even reading, as they read and sing current songs.

Here is something to know, for those of you with older children: it is so important in my opinion to keep things age appropriate. Something that boosts their self-esteem is huge!

Elizabeth loves this and there is follow-up work for us at home! So win-win!

It is odd to think about it but we don’t GO to speech therapy in a pure sense anymore, we work on goals each and every day. (If you ask Elizabeth, she would say every minute.) But we do not have regular speech classes. We check in with Mary often, readjust a goal or two but we do most of our work in social settings now. Because that is where we find the need.

And that brings me up to the last update for Elizabeth.   

Speech Goal #4

Find the need. Once you understand your child, their disorders or needs, then you can start to find ways to help them. And as their needs change, so does the therapy. In our case, these needs lead us out into the world now. Into the world to talk, to engage in proper conversation, to communicate thoughts and needs. Actually, it is a pretty big undertaking now but this is where we find ourselves.

Speaking of which, I can hear Elizabeth loudly complaining that her brother took the T.V. and it was not his turn. So, I will go now to referee an argument, an argument that likely would not have happened had we not done all we did. We will keep working and encouraging because she is worth it all.

-Michele Gianetti 

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. 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.