Made of Gray

and there's more

Holly D Gray13 Comments
Overwhelmed and astonished are my words of the week. The amount of information Caleigh can communicate to us now is astonishing. The "what to do now" is overwhelming me.
The amount of time we spend using the iPad for communication has drastically increased. I want to hear her thoughts and preferences all day. With every transition and activity it is with us.
Monday afternoon our helper asked Caleigh if she wanted to learn how to tell time. Caleigh said "yes" and five minutes later she was telling us what time it was. She's got it down. This morning she told us that it was 9:17. If she can multiply by 5, she can tell time. So now there is a "what time is it?" option on her device and she uses it numerous times a day. We show her the clock and then she tells us what time it is.
Monday night I stayed up programming Proloquo2Go. I think it took me about 4 hours. I felt a bit OCD about adding everything I could possibly think of to help Caleigh. I added body parts, in and outside. I added numbers all the way to 100. We only had up to 32 before. I added more comment type of words. I also added "I want to do math" and "I want to spell words."

I printed out 1st, 2nd and 3rd grade spelling words so that when Caleigh spells a new word I can check it off. Her spelling ability is remarkable. We've made it halfway through the 1st grade list already. She has done several of the 2nd and 3rd grade words just by communicating her wants to us. When she asks to watch Strawberry Shortcake I have her spell out which one she wants to watch. Ice Cream Island or Best Pets Yet. She has spelled out both choices since we started this practice.

As I talk with Caleigh she uses the comment section to go back and forth with us. I told her that we needed to do her hair. She said "okay" "i don't like it." I asked her what it was that she didn't like and told her to spell it for me. We went to the letters section and she spelled out c-o-m-b. She doesn't like it when I use a comb. She likes it when I use her brush better. It was an amazing conversation.
{obviously I did dot comb her hair before these photos were taken}

We have had several of these talks. Each time I think about how wonderful it is to be able to clarify exactly what Caleigh is thinking.

This isn't the answer to everything though. Caleigh has been spelling out e-i-k several times and I have no clue what she is trying to say. We talked about us not understanding everything that she tries to say and Caleigh has let us know that she understands. Another problem we are having, and it's nothing new, is positioning. I'm pretty much the only person, other than our helper, that can hold Caleigh the right way so that she is successful in using the iPad. I can anticipate Caleigh's dystonic movements and support her trunk in a way that just works. Positioning is one of the biggest hesitations that I have regarding Caleigh going to school. How will she be able to talk if I'm not there holding her just the right way? I'm scared of her losing her voice at school. We've tried positioning arms, stands and trays. Nothing has worked so far.

This leads us to the "what to do now" question. Our wonderful therapists have offered suggestions. Switch scanning and eyegaze technologies are options where Caleigh either wouldn't have to use her hands or would be able to use her hands in not such a precise way. My head hurts thinking about these things. I'm completely realistic though. I, mommy to Caleigh, can not hold her in my lap for the rest of her life. We need something else that can open up the world of language for her. I was reminded though, that unlike most of the decisions related to Caleigh, this is not an emergency. She has something that is working for her. We can take our time and investigate different options. As of today, my 4 day OCD communication research marathon has ceased. Breathing and enjoying the moment instead of immediately looking for something better is the new mantra. Caleigh's future of communicating is really exciting, but her communication right now is super exciting too.

While talking to our therapists about different options Caleigh was listening closely. When I asked her about using something new she said "I don't like it" and "I use my iPad to talk." That is where she stands as of tonight.
On the mathematics front Caleigh continues to impress us. As soon as I told her that I added numbers all the way to 100, she literally squealed with delight. I have her pick a number and then I throw out a problem. Of course my calculator is right by my side. I started writing them down when we got into double digits. 8x6, 48+12, 36+17, 56+40, 4x9, 38-22, 65-32, 34+48, 89-53. The quickness of each answer is astounding.

Today has been about spelling and yesterday we did a lot of math. Whatever she asks to do, we do it. Caleigh has a little more independence in her life now and that makes us smile.
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