The bad news get worse -

The bad news get worse

I spoke with Gavin speech therapist yesterday because she wanted to talk before meeting with Gavin.  She’s really cool and does a fantastic job of working with Gavin. 

She has expressed concern because Gavin is having meltdowns at every appointment. 


When she tries to talk him down or says anything at all, he just gets more upset and agitated. For the record, she handles Gavin amazingly well, so this has nothing to do with her.

The worry is that with his increasing medical instability, these meltdowns aren’t a positive thing. 

She’s also noticing more speech difficulties but can’t address them without Gavin freaking out. 

He had only a few minutes left after we finished speaking but in the 5 minutes, he lost his cool and yelled at her.

I believe these are actually more meltdown and less tantrum. He’s simply frustrated because he can’t do what he used to be able to do. 6

I told her that we will defer to her best judgment in this matter. Lizze and I are both realistic and know that in the most perfect of conditions, there is only so much that can be done.  With Gavin’s situation  being far from ideal, this is all that more true.

At this point, she wants to keep trying, at least for another session or two.  If his behavior continues, we will have to discontinue Speech, at least for now. 

On a good day, Gavin’s hard to understand.  As you know, there aren’t many good days anymore.

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It’s the worst when our kids get frustrated.  Just plain sucks.
When we would hit these roadblocks, we stopped what we were doing, and came after the “skill to be learned” from a different angle.  It’s more difficult to do this where communication is concerned, but a speech therapist not only helps develop speech, but also communication.  Maybe back off on the verbalization and move to a more electronic typing, word tile sliding, PECS type method for the time being.  Maybe if he can get his thoughts out, he’ll find the courage to keep trying to speak out loud, and not be worried that he isn’t being heard.


@mkosmicki1 that was actually pretty profound. A huge part of the frustration for Gavin is that he’s losing some muscle control and it affects his ability to speak.
You right though, we are going to try a different approach.


lostandtired  I actually agree strongly with mkosmicki1 our son is essentially non verbal and we have used PECS (with limited success) and electronics (Ipad and laptop) with much more success. The fact of the matter is that in our case our son took advantage of the technology and actually started actually developing some additional speech as his comfort level increased. The unfortunate part in our case is that our home system does not have the Proloquo software installed ($600ish I believe) so he does not get to use that at home, but his school system has it and he uses it there well.

Julie Sparks

CarlBainbridge  When we bought ProLoQuo a couple of years ago it was *only* $200.  Recently we started our mostly non-verbal 14 yo on Go Talk (no idea of the cost of that) but it seems a bit easier to manipulate than PLQ.  Good luck!  But yes, to all of the above consider Aug Com.  I swear we have tried it all and some times he just wants nothing to do with it and other times he flips through it and tells us exactly what he wants.  Our frustrating little puzzle …


#THC is the #1 anti-meltdown drug I know of. The side-effects include laughter and the munchies. No sedation or blurriness.


ricketzz Um, I don’t think Rob wants his son turning into a pothead on top of all his other problems.

Would love your thoughts, please comment.x
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