How old are you?

This weekend we went to Legoland.  Nate has been there before, but he was too little to remember.  We were all very excited to be there, as there is plenty for all 3 of my boys to do.  One of the first things we wanted to try out were the cars.  Kids from age 3-5 years can drive their own little lego car, pushing on an accelerator and steering around an oval race course, all without a set track.  As we got closer to the front of the line, we realized that the Legoland employees were asking the little kids how old they were.  I guess to make sure they were older than 2 and younger than 5?  My heart sank.  I was wondering if they might not let him on the ride because he can't say how old he is (because of the verbal apraxia) and even showing with his fingers is difficult (possibly limb apraxia?).  I was secretly hoping they'd skip over us, but when it was his turn, the young girl asked.  Randy was holding Nate at the time and told the girl that he couldn't talk.  She then asked him again and of course he said nothing.  She then showed him 3 fingers and asked him if he was 3.  He slightly nodded his head at the same time turning away to hide his face because he's a little bit shy.  He looked at her again and she repeated the question.  By this time I was tired of her asking, so I pulled out his Legoland membership card (you have to pay for kids age 3 and up) and told her he has a membership card, he's 3.  She quickly replied ok and went on to the next kid in the line.  I felt awful for Nate.  He can't even say his name, let alone how old he is.  In the end, he had a wonderful time on the ride.  We were so proud, he drove his little Lego car so carefully and while other kids were bumping into each other and into the curbs, he drove very well.

This week we have an evaluation with an OT through our health care provider as well as an appointment to get the results of some additional OT assessments that were completed at his school.  Although most physical things that Nate does are pretty normal, there are some things that he still has trouble with.  He still hasn't completely demonstrated his handedness, although we know he's a lefty.  When he walks up stairs, he always uses his right foot and running is still awkward looking, although he does move pretty fast.  So we'll see what new information this brings.

Through the CASANA website, I receive a monthly newsletter with updates and all sorts of information.  This month they included a link to a short documentary about a 4-year old girl, Evangelique, with severe CAS.  It was interesting to see some of the similarities (reflux/GERD and the struggles to speak) but also to see how this particular girl's struggles were even greater than Nate's.

This past week was Nate's last few sessions with the SLP in our school district.  Teri has been amazing and so supportive.  She was the first to confirm that Nate's struggles might be CAS and has got him saying or trying to say a few more things.  More than he was 3 months ago!  We are going to truly miss her and we can only hope that her replacement is as good with Nate and cares about him like she does.

Normal Speech

What is normal?

 

nor·mal

–adjective

1.

conforming to the standard or the common type; usual; not abnormal; regular; natural.

I've been wanting to get some videos posted, as a way to share Nate's progress in therapy.  This is Nate's normal speech.  Normal for him but abnormal in comparison to how a 3 year old should be talking.  Here he's saying something about a puzzle piece he's working with during one of his speech sessions.  Sometimes you can pick out things that sound like "words", usually just the vowel sounds in the syllables, but here, I'm not really sure what he's saying.  

Nate's been going to speech through the school district for almost 3 months.  He's getting better at some of the individual sounds, like /p/ and /t/.  The sound for t is one that's easiest for him.  Here, he's working on the word tree.  He knows the sign and his speech pathologist is trying to get him to say tree or a version of it (tee).  Some of the things I've read about working with apraxic kids, suggests that approximations of words are a good focus as well.  They've also been working on some hand signals to go along with the place where the sound is made, like the t sound being made in the front of the mouth, as opposed to the k sound being made in the throat.

     

One of the sounds he really struggles with is /s/, like in snake.  Instead of blowing air out of his mouth, he approximates the sound by blowing air out of his nose.

Here he's trying to say the word book.  Sometimes he can say the individual sounds, but many of the times, he's groping to find the right sound to say at the right sound and that's not even being able to string them together into a quick and complete word.

And finally....the word that I'm hoping he'll one day be able to say on his own.  He can make all the individual sounds for it, but stringing it together and using it is a whole other thing....

Some days are harder than others, when I think about all the conversations we're missing out on with him, or that he's missing out on with us.  He finds other ways to communicate with us, so it's not like he's silently watching the world go by.  I just often wonder if he'll ever learn how to talk.