Tuesday, March 19, 2013


Kaiden's non-verbal.  Has been since Dec 18th, 2009.  At that time, he had 3 words: apple, asshole (oops!) and Mama; Mama being the only word said with intention.  Kaiden jargons a lot, and has for several years now, but while conscious for the most part has lost the ability to form words, thanks to the seizures.  He occasionally says "mum mum mum" for Mama, but it's pretty rare.  He can say "hi" when greeting people, but always drops off the H, so it is only the "i" sound.  He said "jet" upon being shown a flashcard of a jet a few times, but that was quite awhile ago already.  Anything you ask him to say now, comes out sounding like "yeh" or "eh".

He can, however, speak clearly and coherently in his sleep.  I don't remember the earlier words, as I assumed I was dreaming . . . until the night I was awake and heard him say "too hot" as he kicked off his blankets.  Other words I remember hearing are "sister" (no idea on that one!) and "too early" when it was around 5am.  He has the sweetest little boy voice . . . I long for the days when he'll be able to talk again.  Many of his tantrums are driven by frustrations with communication.

Kaiden understands English perfectly, can follow directions, can make requests, can tell me things . . . but in order for me to understand him, I had to learn his language.  Kaiden does not sign, either, and not for lack of me trying to teach him!  Same with feeding, he just will not use his hands for anything other than what he wants to do.   He does not imitate, yet learns from watching us.  I cannot get him to imitate anything I'm doing when I ask him to do it, but there are so many things he's learned to do by watching us. Kaiden does not point, either.  He will touch what he wants rather than point to it.

Right now we're working with the PECS (picture exchange communication system).  He gets that, no problem.  Last week the school gave me some of the same pictures they use with him.  Today I showed him the pictures and asked whether he wanted grapes or blueberries for a snack.  He got mad and wouldn't choose either.  But when I expanded the choices to include a banana, the banana was immediately and clearly chosen. 

Here's something that bugs the hell out of me.  After chatting with a friend online who is a Speech and Language Pathologist, both of us feel that Kaiden has apraxia.  After reading up on it, that might just be the problem with him not using his hands.  He can certainly use his hands correctly, but only for some things.  So, at school conferences last Friday I brought up the subject of apraxia and that I would like speech therapy for such implemented immediately, helping him learn to form words.  I knew he was receiving 15 minutes of speech therapy once per week in the school setting for PECS; what I did not know was that Kaiden is "often only observed in the classroom setting" rather than direct one-on-one therapy.   I was told by the speech therapist that since speech generally comes after gross motor skills (which I knew), basically not to worry about it until his gross motor skills improve.  And . . . that she does not feel Kaiden has the cognitive skills yet to do that type of speech therapy.  REALLY???  Kaiden's 4. Granted his motor skills aren't great, but that doesn't mean he can't think or learn!  I said, well, then we'll be doing it at home then, because Kaiden has the cognitive skills, he wants to communicate, he can communicate in his own way, but if you can't understand his language, you can't understand HIM.  I had to remind her not to look at this as Down Syndrome, but as a seizure injury, which she had completely forgotten . . . and was suprised when I told her (which I KNOW I've told her before!!!) that he can speak clearly in his sleep.  After repeating my request for more therapy and stating my case on his cognitive skills, she reluctantly agreed to up his therapy sessions to two 15 minute sessions per week.  She told me she felt he wasn't ready, that therapy for apraxia wouldn't do any good.  Now, with Kaiden, he has his routines.  He needs a long time to incorporate new stuff into his routines.  I said, best to start now, so he gets it incorporated into his routine.  NOW is the perfect time to start since he's learning and soaking up so much right now.  He might not respond physically yet, he might fight you, but he's learning all the same.  Why wait?

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