Jake's Journey with Apraxia

And the Friends We Met Along the Way

It’s tax season so I’ve been going through my 2011 files and when I ran across Jake’s doctor bills, tests, and insurance EOBs, it brought a sick feeling to the pit of my stomach. Last year, things were dramatically different for us. And although only 365 days have passed, it feels like an eternity ago because we’ve travelled such a great distance since then.

This time last year, Jake’s eczema was really bad, he had just completed two hearing tests (one in February and one in March), he was having frequent ear infections, and he had to have a big glob of ear wax removed from his right ear by an ENT.

From a speech perspective, I was confused, inexperienced, and uncertain about which path to take. And I had a lot of questions and no answers. Does he really even have a problem? How is a SLP who is singing songs, playing with blocks, and putting together puzzles going to help him talk? Why won’t anyone give me a diagnosis? How can we fix a problem if we don’t know what the problem is?

This week I started reading Leslie Lindsay’s new book Speaking of Apraxia and I am thoroughly enjoying it. Because this book is written by a mother who has a child with apraxia, it has been very therapeutic, informational, and comprehensive. Not only is it filling in the blanks I still have about this disorder, but it’s helping me to not to have such attitude about how long it took two SLPs to give us a diagnosis (January-August).

I’ve learned that apraxia is pretty much impossible to diagnose if a child is completely non-verbal as Jake was this time last year. Also, although some people get a diagnosis earlier, three is the magic age that many therapists wait until because they don’t want to misdiagnose the child.

My, my … what a difference a year makes! Jake has spoken better this week than he ever has and he said what I consider to be his first, well-thought out sentence. I was making macaroni and cheese and as I went to put it in the microwave, he pulled the stool up and said, “I want to see the bubbles.” I really liked this sentence that seems basic on the surface because 1.) It’s a spontaneous sentence over two words and 2.) It shows that he’s thinking the cooking process through. He knew that even though the water is not boiling now, it will be soon.

Maybe the combination of everything we have been doing is paying off. Last week, I decided to stop public school therapy, but he will continue with private, thirty minute sessions on Tuesdays and Thursdays. On his off days, our SLP wants us to practice his words at home three times a week. This week I managed to squeeze it in on Monday and Wednesday, and I’m going to try my hardest to stay focused and do it tomorrow as well. My plan is to take Fridays and Sundays off.

On Monday we did therapy on the iPad, but on Wednesday I decided to switch it up a bit and did a game called Freeze Frame that I read about in Speaking of Apraxia. I dug out some homemade flash cards I had made a couple of months ago that he was completely uninterested in at the time and basically played a version of musical chairs, only without the chairs and with speech words instead.

The first night we did it, he was intrigued and played three rounds perfectly. On Thursday, however, he brought me the cards and a CD because he wanted to play again and he started goofing off a little bit that go around. He got a little controlling and wanted to start turning the music on and off himself, which I didn’t really mind. I’ve got the same attitude our SLP does … As long as he’s saying his words, I don’t care what he’s doing while he practices them.

 

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5 thoughts on “It’s That Time of Year Again

  1. Amy R. says:

    What a fun game! I finally am able to join your blog! I am on a computer at the shop. My home one does not give me the option to “follow” blogs. Don’t know why. Jake has come so far in a year. He will be caught up by school time, I know it. You are such a committed mommy and it will pay off. Keep it up! I prayed for Jake while I watched your video. 🙂

  2. tstarmom says:

    Thanks for your encouragement and your prayers. I appreciate it!

  3. efloraross says:

    First of all, he is so adorable, Second, I LOVE this game! I am totally going to play this with SB! She’s been very resistant lately to doing her speech therapy homework with me. This could help a lot! And lastly, doesn’t it feel amazing to watch their progress and know how hard they worked for it? It makes me cry sometimes. OK, a lot. Love reading this post!

    1. tstarmom says:

      I’m glad you like the game. I’m always looking for new things to do with Jake as he tends to get bored easy! Yes, it is great to see his progress and I love that my other two sons get just as excited as my husband and I do to see his speech improve little by little. I read your post yesterday and I hope your daughter is feeling better! How scary for you and her both. Take care and have a good week-

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