Easter, Intensive, New Boots

Easter weekend was somewhat relaxing. Caleigh chose not to sleep Friday, Saturday and Sunday night. Having the weekend off from intensive therapy confused her schedule. Plus she wasn't getting her workout that wears her out. When Caleigh doesn't sleep - we don't sleep. Parenthood. Even after putting myself to bed at 9 every night this week I still don't feel like I've caught up.

We had a good Easter. We hung out with family, ate yummy food, dyed but did not hunt eggs and blew large bubbles in the backyard.

Caleigh has done really well with intensive therapy this week. There really isn't anything new to report other than increased strength. She's getting better and faster at all her exercises.

This week we also went and picked up Caleigh's new AFOs. Her "boots" as we call them have been nothing but trouble since the very first pair arrived. You can read about the last pair here if your in the mood for some whining and complaining.

I did a little happy dance this time around because they are actually staying on her feet! She can't wiggle and squirm out of them! WhooHoo! The difference this time around is the SMO insert. It's a boot inside a boot and it's amazing. Putting the boots on is ten times easier than before and Caleigh doesn't get as angry about the process either.

Caleigh picked the colors and design. I was a little worried about the lime green, but it looks cute. I ordered extra wide tennis shoes to go over them this morning. Caleigh's extension tone is cut back dramatically with these. Her striatal toe is down and her knee hyper-extension is decreased. All great things!

Caleigh says she likes them. Although she has let me know that the stretch isn't very comfy. We are building up on a wear schedule so that they don't hurt her muscles as much. After all, she hasn't really been in a good foot position in years.

That's all for now. Sleep beckons me. Again.

iPad Documentation

Since we discovered that Caleigh had a lot of knowledge just waiting to jump out of her curly little head; we've been told to document, video, document.

Should she get into an school evaluation and not perform, after all she is 3, then no one would have to believe that Caleigh has this knowledge.

I've been trying to set up the camera when Caleigh chooses to spell or do math. Here are a couple of videos documenting that.

This first video is Caleigh spelling Candy Land. We had just gone to the store today and bought the game. We haven't played it yet so I'm hoping she likes it.


Right now I'm working my way through a first grade spelling list. Every time Caleigh asks to spell I end up pulling words from the list. Here's a list of the documented words to date that Caleigh has spelled out for us:

a, at, be, big, bike, bike, bus, but, came, can, cap, cat, cup, cut, five, fly, flying, fox, frog, from, fun, game, gave, get, go, going, got, green, hat, he, hen, him, hit, hop, hot, hug, I, in, is, it, keep, like, make, man, me, men, mop, name, no, not, nut, of, on, one, pan, pet, pets, pig, planes, best, cow, daddy, because, bath, bed, clock, naptime, time, Caleigh, Koko, mommy, Mimi, Pop, Heath, Elizabeth, comb, music, eggs, adventures

This is the second video. Caleigh answers 13+25, 50/2, 1x4, 4x6, 25+30. Yes she can do division too! We've only asked division problems that end in whole numbers since we don't have decimal points on Proloquo2Go, but that is definitely something to look at. Caleigh's movements are stronger in this video. I spent quite a bit of energy blocking her movements and during both of these videos Caleigh was very interested in chewing on her hands. I'm pretty sure she enjoys making me wait for the answer as you can see in the last question I ask her.


Here's a list of math problems that Caleigh has answered for us so far:

8x6, 48x12, 36+17, 56+40, 4x9, 63-12, 15/3, 16/4, 30/6, 100/10, 9x9, 16-14, 38+22, 65-32, 34+48, 89-53, 23+34, 4x8, 16/2, 23-6, 20/2, 11+11, 22/2, 13+25, 40/4, 20/4, 20/10, 50/2, 1x4, 4x6, 7x7 and many many more that we didn't document in the beginning.

More videos coming soon all in the name of documentation.

Recap - The First Week

Caleigh's first week of intensive therapy was amazing. She's stronger. She's a hard worker. She understands that this is helping her. Caleigh wasn't cranky and really only acted semi-tired on Thursday. She actually woke up giggling to herself this morning. She's my rock star.

The big focus of this 3 week session is to strengthen her arms, more specifically - triceps. Previously Caleigh hasn't really used her triceps. Baring weight on her arms is a challenge. Look at those triceps in the photo above! She's lasting longer and pushing harder than ever before.

Something that has become very evident during this first week is that Caleigh's newborn reflexes have not left the building yet. We already knew this but her STNR and ATNR are very present. These reflexes are hindering the sitting, crawling and all the early childhood movements. There isn't a cure or a special "fix" to integrate these movements. We hope that after repeated exercises working against the reflexes Caleigh's brain will work around them.

Caleigh is following directions so well that she is able to slowly control these movements. We need to be more conscious about asking her to make movements instead of just putting her into positions. She can do it. I've seen it several times this week.

I myself am tired.
The first morning I got up early, showered and had everything ready to go. We were out the door earlier than I had planned. As I drove down the HOV lane I had a feeling of worth. I was up and dressed with every other adult headed to work that morning. It felt good to have a routine purpose for the drive in. It reminded me of my working days. Call it first day excitement.

By the second morning, I was over the hour drive and definitely over my irritability towards other drivers. I'm over it. The drive is wearing me out.

Caleigh loves going and she tells our PT "Thank you" "I like it." Two more weeks to go and we will have a stronger more independent girl.

Exhausting drive or not, we are going.

Our DME guy came back out to move the i2i headrest onto Caleigh's leckey squiggles chair just in time for our eyegaze demo. This headrest is wonderful. Caleigh's Houdini headrest days are over. No more hooking her head around the headrest. She looks really good and it is working so well that I ordered one for each of her chairs and kidwalk.

So the eyegaze experience was a no-gaze experience. We showed up and because Caleigh couldn't hold her head still enough to calibrate the camera. It was actually pretty boring. She was supposed to look at a tiny dot on the screen as it moved around the screen five times. Boring for a three year old. She did it once, but something was off and it didn't work. It was annoying for Caleigh, but I can totally see the freedom it gives some people. The rep basically said that Caleigh wasn't a good candidate for eyegaze. I pretty much had figured that out by watching YouTube videos before our appointment. After we were done, Caleigh got on her iPad saying "I use my iPad to talk" over and over. The rep talked to us about some other devices that are more European, but might be just what she needs. We are planning a trial with a new device soon.

After the demo I went on a AAC recon mission. Googling anything I can find on iPad apps, switches, devices and language systems. I've found some interesting things. Just like anything technology based the 'new' gets 'old' really quick. There are great possibilities out there I've just got to square down some logistics.

Updates before Intensive

Tomorrow starts another 3 week intensive physical therapy session. So I thought I would run down some Caleigh updates that have been on my mind.

Last week our DME guy came out and adjusted Caleigh's power chair. She's grown taller again. I had them bring out this head rest to borrow. It's by Stealth, the i2i. The bracketing system is different on every single piece of equipment we own. The KidWalk was the only thing that the loaner head rest would go on without a major modification. So for now we are trying it on the walker, but have plans on adding this to the power chair and manual chair.

It really does get rid of the left head tilt that Caleigh has. In the KidWalk it doesn't do much good for keeping her head upright, but that is mainly a modification issue. The lateral currently can't come up high enough to support Caleigh's trunk right now. We can only customize the loaner so much.

I remember 2 years ago, during our first power chair trial, we were presented with the i2i head rest as an option. I thought it looked horrible. I turned it down pretty quickly actually. At the time, to me, it looked very stereotypical of a child with CP. Funny how my thoughts have changed since then. All in hindsight now.

This past Saturday was the annual beeping Easter egg hunt with our local division of blind services. This was our third year to attend. I mentioned it to Caleigh on Friday asking if she wanted to go. She said yes. I dropped it not really wanting to get up early to go. We wake up Saturday morning, pull out the iPad and asked Caleigh what she wanted to do that day. She goes to the alphabet and spelled out E-G-G-S....
At that point we decided to get dressed and go. How can you say no to that?

We had a good time. We hung out with our friends the Briggs. Played a few games and then it was our turn to "hunt" the beeping eggs. Caleigh snagged a few eggs and smiled tons.

We took our annual photo with the scary vest wearing bunny. Then we headed home. Caleigh had a really good time this year.

This week we have the start of intensive PT and then on Thursday Caleigh has a demo with the eyegaze system. We plan on demoing the Tobii eyegaze system soon as well. She is still firm in her "I use my iPad to talk" stance. So we'll see how things go.

and there's more

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.

Multiplication & Spelling

This weekend was one of interest beyond our wildest imaginations. We played outside, we went for long walks with friends and we rounded out Sunday with a visit to Caleigh's grandparents.

While at Mimi & Pop's, Caleigh was doing some addition and subtraction on the iPad. Up until that point we had left it at the fact that she knows addition and subtraction. I asked Caleigh if she knows what multiplication is. Then asked her 2x2. She got it right. I sat there, mouth open, while asking numerous multiplication questions. Hard ones. 7x4, 8x3, 6x5, 5x5....She got them all right the first time. I've never shown Caleigh a times table. I've never discussed the concept.

Here's the irony... I have to be the worst person in the world with math. I pretty much have a calculator hidden everywhere. I learned multiplication in 3rd grade by memorizing the times table visually. After that my career with math was over. Division is a joke and if probed for an answer I will tear up. I literally cried through high school algebra and barely passed. I have a documented mathematics learning disability that got me out of taking college algebra and statistics. When I say I'm terrible at math, I mean it. Words and Art are my thing. Math, not so much. So to have Caleigh answering math questions faster than I can count on my fingers is just the most ironic thing ever. My family and friends can ensue their laughing now.

This morning, in an effort to find out what else Caleigh knows, we sat down and started to ask her questions. I asked her if she knew how to spell her name. She said yes.

Guess what we found out?
Caleigh can spell. Not just spell a word here or there. Caleigh can really spell.

List of today's words for memory sake:
Caleigh, Mommy, Daddy, KoKo, cow, Kendall, Meme (Mimi), Pop, Heath, Elizabeth, nap time, ice cream

After all of that, I told Caleigh to just spell out any word she wanted to. She typed in b-a-b-y. I asked her if she wanted her baby doll and she said "yes." While Eric was trying to find the doll she typed it in again b-a-b-y. Apparently daddy wasn't moving quick enough. So we played with the baby for awhile and then I asked Caleigh if she knew what the baby's name was. She said "I'm not sure." I asked her if she wanted to name the baby and she said "yes." So we went to the letters section and she typed in b-a-b-y. I told her that yes, she is a baby, but what do you want to name her? Caleigh typed in a-m-y. Baby Amy. I asked her if that was what she wanted to name her and she said "yes," while smiling. We don't even know an Amy. I guess now we do.

This is how I have Proloquo2Go set up. Each page has three letters and then an arrow that leads to the next three letters. If Caleigh needs to go backwards for instance to spell her name then I take her back to this starting page. C-A-L are in order, but she needs to go back for E-I-G-H. So she did the CAL and then I took her back to the start page and she went to EIGH. This is a hurdle when she is wanting to spell a word without a prompt, but I'm going to do some thinking to find a way around it.

This afternoon, when our helper got here, I started bragging on the many things Caleigh did this weekend. We sat down to use the iPad and show off the new skills and Caleigh's dystonia was all over the place. I don't know if she was excited, nervous or maybe we worked on it too much that morning. She was hitting buttons she didn't want like crazy and ended up getting frustrated. I was frustrated for her and with her. This dystonia/cp monster really stinks sometimes. When she has moments like those I just need to reflect on all the things she can do and come back to the situation at a later time. Knowing her triggers and following her ques will make things easier for Caleigh in the long run.

Honestly, my head hurts trying to think about all of this. It's amazing. I haven't doubted Caleigh, but crazily enough I haven't assumed that my 3 year old knows math either. What else does she know? How do I find out? What can she spell? If she can spell these words, can she read? How on earth does she know multiplication? I haven't even asked her division questions yet. Should I call someone? Who? What in the world do we do about school? What would she say if she could just wake up one morning and talk with her own voice? What would her beautiful voice sound like? And so it happens again. Another tremendous milestone achieved, and my immediate second thought is the next step. Talking with her own voice and finding out what more she knows. Parents of children with special needs never get the savory moment of a milestone. There are always higher stars to be devoured. Always.

The term "gifted" has been thrown around here lately. I Googled some characteristics of a gifted child and found that Caleigh has most, if not more than, the traits listed except the physically involved ones. No, she cannot yet put a 20 piece puzzle together by herself. I'm not a professional, just a proud mom, but I do know that cognitively Caleigh is doing great. I'm not ready to toss out fancy terminology. I also know all to well children with brain injuries sometimes, for one reason or another, stop developing at a certain stage. I'm sure you have all heard the line "he is 14 years old and at a 3rd grade level." So I plan on taking what Caleigh knows now and running with it and building on it as long as possible. Maybe that will be all the way to college? Wouldn't that be fun?

Perhaps one day Caleigh will take over writing this blog?