Chapter 6: So many assessments

Both Chandler and Leigham went to pre school and it was such a good experience for them that I really wanted Teddy to experience pre school as well.  The school districts in Red Deer offer a pre Kindergarten program for students who may have some delays in specific areas and it is open to students who do not have delays but there is a price attached to it.  Either way this is a great program and I had signed Teddy up for the assessments prior to us knowing his diagnosis, but his diagnosis helps him get into the Pre K program so I will take it.

In March, Teddy had both of his assessments completed and both his assessments came back as he had some delays in all areas.  The areas they assess are receptive language, expressive language, gross and fine motor skills and awareness of self.  Obviously, with Teddy's diagnosis of CMT, he would have delays in the gross and fine motor skills and I expected a few delays in the expressive language and possibly in the awareness of self.  We don't do a lot of songs and singing with Teddy at home but we do read every night. When the calls came back he had made it into the Pre K programs for the public school he had delays in all four areas and in the Catholic he had delays in two areas.

We have set up some more assessments so we could determine a base line for Teddy. I feel it's important that I have a baseline of all the things he can do so if the time every happens that he begins to lose skills or capabilities we can track the rate to which he is losing those skills.  We already have the Gross Motor skill assessment, which shows a delay but he is moving forward with it, his AFOs are helping him move better, he's jumping more, he has more confidence when he walks, he's getting better but he won't necessarily gain new muscles where there were no muscles but maybe in time he will be able to strengthen the muscles he has to keep him as able as he is.

Due to the delays they noted in the his speech, the public school district requested a speech assessment.  It was a good assessment and showed that Teddy's speech is mostly normal, he is struggling with his s blends, he has some backing, and the th(f) sound is still a struggle for him but it is mostly age appropriate delays that with a little extra work he will grow out of and will be fine.  I was not too worried about his speech, there are a few things that concerned me but for the most part I felt once he was going to school and learning those letter sounds he would be ok.

We also completed an occupational therapy assessment to get a baseline on Teddy's fine motor skills.  He was actually doing quite well in this area and besides a little weakness in his hand strength which could be due to his CMT most of his skills were very age appropriate.  We do have some exercises and tools we can purchase to help him with these area of growth, especially with the fatigue. 

That's I think what I notice most for Teddy, he fatigues much quicker than other kids his age.  He will work to keep up with those kids and his older brother but then he has such a hard crash.  He can go swimming for a couple hours and when we get out of the pool he's exhausted.  We can go to the park or let him play outside during the day and he's in bed by 6:30 and sleeping the entire night through.  He can't go for super long walks like his brother could at that age, before he's tired out and wants to quit walking and almost needs to be carried.  For being an active family, who like to go outside when the weather is nice this is a bit of monkey wrench, we have to reconsider our outside excursions, I may need to buy another stroller or something to have just in case he tires out.  We plan to go to the Calgary Zoo this summer, at this age Leigham walked the whole zoo pretty much, I don't know that Teddy will get through the dinosaur area.  Maybe it will be more frequent rest stops, or only seeing parts of the zoo at a time, I'm not sure, but we will roll with it and now we have our assessments complete so we can develop and grow from our base line.


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