I was much calmer going into day two of this 4 day intensive at Kaufman. I think knowing what to expect really calmed my nerves.
Henry had two speech therapy sessions with Nancy and there was a half hour break in between. This was followed by his first OT session with Amy. It was a jam packed day.
Henry had to be woken up at 6:30 am this morning and he didn’t fall asleep until 10:30 pm the night before, so I have to admit my expectations were kind of low for his performance with speech. But Nancy, boy, I don’t know how she does it!!! It would take a full pot of coffee me to have a tenth of the energy and enthusiasm she delivers day after day, session after session. I continued to be amazed with her today and her ability to keep Henry engaged and attentive. He loves her arsenal of toys and as she spends time with him she knows more and more what he will respond to. As soon as his attention starts to go elsewhere, she redirects him within seconds. Not only that, but Henry is having a ball! I am exhausted by the end of the day, and it’s a lot of work for him to do what would seem simple to us…so I know he ‘s exhausted too. However, I don’t feel bad about working him this hard because I know he’s having so much fun!
In between therapy sessions, Nancy gave me a box of cards and asked me to pull out word cards that represented some of Henry’s favorite things. I pulled out a stack of about ten, ones we weren’t already working on at home. She was going to help me get the appropriate approximation for me to work on. So she worked these into the second therapy session, taking notes as she went. She gave me a list of the nearest approximation that Henry could achieve to represent these words. This is such a huge help because I’ve noticed if I ask too much of Henry he won’t try at all. Sometimes I need to break it down to one syllable only to get some sort of attempt. For example in the past, the word banana was “ba”… if I asked anything more I got silence or frustration. After a while I could ask for “nana” and we are successful with that now. Were talking over a span of 6 months here. But not all words are as easy to break down as banana, so I got help from her on such words as “pretzel”, “crayon”, etc.
After the second speech therapy session, we briefly conferenced with Nancy before heading over to OT. She said she is more sure than ever that what Henry has is Childhood Apraxia of Speech. She had more time than the day before to observe him during therapy and he was doing a lot of the typical things of CAS. He was groping for words, words were getting distorted when combined and he was backtracking to more familiar sounds and words when he couldn’t say what was asked of him. The good thing is that he is attentive, eager to communicate and smart. This all makes for better progress with therapy and he seems to be a great fit for the Kaufman technique overall. He is responding quickly and positively and the rate of his progress way exceeded my expectations. I spend half the time watching behind the double glass with my mouth hanging open. My husband and I will turn to each other and say, did he just say that?? What? He’s never done that before? How did she do that?? It’s mind blowing. Again, I think we got the timing right on this trip but I know it wouldn’t be possible without Nancy’s expertise and talents.
Henry has been really wound up after these sessions. Screaming like a maniac, knocking down toys and running up and down the hallway. He’s become hard to contain and very hyperactive. I can’t tell really why this is happening, because he is happy all the while. He isn’t crying or complaining, he’s laughing and smiling. So I’m not sure if he’s just a little over stimulated, over tired or a combination of a bunch of things. I was sure he wouldn’t be able to calm down for OT, but luckily, of course, they are such experts and they are used to working with slightly crazed toddlers. Henry had a blast with Amy, his new OT. They did an obstacle course and a trampoline and a ball pit. We observed from behind the glass.
Afterwards we caught up with Amy, I was curious to her opinions of Henry. She said he definitely had some low tone issues, mainly in his core. He is overcompensating for this by sitting in strange positions or you can see by the way he gets himself up and down and on and off things. He’s working around not having to use those muscles. So we need to build that strength. Also he is proprioceptive seeking. We have been figuring this out so it makes sense. He needed to slam into some things and have some deep pressure applied to him before he could navigate the ball pit and the feeling of moving around on a changing surface. He loved what they called “Henry sandwiches”… being pressed between a big mattress with him in the middle. He looked like he was getting squashed but he kept asking for more more more! It’s something to work on at home, but she said it explains some of his sensory seeking behavior and that it’s good he could do it for himself. He’s self regulating and grounding his body, it helps him do other activities and focus, and ultimately will help with his speech when we can get it worked out. Tomorrow we tackle his vestibular issues in space camp.. can’t wait!
Another huge plus in visiting Kaufman is meeting other parents and children. This happens on an hourly basis because the office is so busy. I was lucky enough to meet Lori and her son Nick…we had had some contact on facebook and it just so happened we were at Kaufman the same week. We are on alternating schedules with Nancy so it’s hard to have much time to talk, but hopefully sometime this week we can get to know each other a little bit better.
I will have more updates tomorrow!