Comm Device . . . not using . . . bad parents?

[Jessie]

Ok, we have been 'using' a communication device for Jason that is provided by the school for the past year or so. They've changed the device a couple of times and each one Jason 'gets' how to use it right away - no issues with him understanding how to use them. Our problem is, and always has been, Jason initiating conversation. When he does initiate, it's either very simple things that we can understand, or totally unintelligble - no real in-between there. Hope that makes sense . . . An example of how we 'use' the device is, the teacher will record a message home, usually having Jason repeat a couple of words. He plays it for us, puts it in his backpack to take back the next day. If something happens that night, I will record a message back for the next morning. So, me and the teacher are speaking on his behalf. Is this really helping him? He has no interest in using this. Over Christmas break it sat on the kitchen counter the entire time and was never touched. And yes, we have all of his favorite things loaded in there - foods, pets, siblings, games, movies, etc.

The comm device we have (and actually all of them in my opinion) are just electronic versions of PECs books. I've never liked the idea of PECs for Jason because it's unrealistic that he will carry it around with him to communicate with. Also, they only work well if we know what he wants to say . . . how the heck do we know except for basic things that we can already understand? Personally, I think comm devices are great for kids that are struggling and will eventually not need them, or for those that are truly physically unable to speak (vs. a cognitive issue as with Jason).

Here's where the bad parenting comes in . . . I feel like we need to just drop using it . . . which leads me to feel like I'm throwing in the towel on his speech problems.

My dad is going through the same issue with his speech, which is not really initiating alot of conversation. This is a man who, pre-stroke, was VERY chatty and an awesome story teller. His speech has come back so well, but he's just not initiating much. The ST said it's a brain thing and he may or may not ever get that back.

Which leads me to look at Jason a little differently. I think we have to now accept the fact that Jason never had this capability and never will. So . . . while we will ALWAYS push him to speak (vs. hand gestures or just plain old grunting), I think it's time to drop the comm device.

I can't decide if I feel bad about saying we are going to stop using it, or maybe I just feel bad because I'm letting it soak in that Jason is where he is for speech??

Help me, my friendly psychotherapists!


Jessie

[CC]

"Here's where the bad parenting comes in . . . I feel like we need to just drop using it . . . which leads me to feel like I'm throwing in the towel on his speech problems."

Jessie girl let me say my guy has had an augmentative device since he was in preschool and has continued to have one right up till now and he is now 16 years old.

He has had lots of different ones over the years and YES he to has been able to use them easy as 1 2 3 BUT its the last thing he has any interest in He is very very verbal not that most understand him but Chris understands himself KWIM... He will go verbal every time and then to sign before he even would consider the Augmentative

We have had him tested and evaluated many times over the years to make sure he gets it and they ALL say he is a perfect candidate for one but honestly he hates it

He would much rather sign even if he has to make up a sign KWIM

Any who all I really wanted to say is we finally after all these years turned it back into the school hopefully another child will get good use out of it. For now we are sticking with the verbal and working on it daily and even at this age I can honestly tell you he comes out with new words that others understand ;D We continue to work on sign and cueing with him.

NO you are NO way bad parents just not be the right time for Jason to use this. Least thats how Colin and I feel for Chris.

Honestly girl Speech has always been our number one issue with Chris and never have and never will give up but the device is just not what he needs right now even though the school pays for it.

Maybe one day I will try again who knows but I can tell you after ALL these years of trying it with him and it only being a PITA for him, we are letting it go. NO way do I feel bad and I tell you girl NO way should you either.

Thats my opinion and I am sticking to it

CC ~

[Ericsmomma]

Jessie,
Eric has a communication device at school. The teacher sent it home for the summer, because I was going to go out and buy one to have at home. (she wanted me to try it first).
Great idea, so I thought. Eric has absolutely NO interest in it! Would NEVER initiate using it
to communicate. My excitement soon turned to disappointment....as I thought this was the
answer for my non-verbal son. He is the same way with signing...knows alot of signs, but doesn't initiate it...just kinda "repeats" when you work with him. So I understand when you say you realize where Jason "is at" for speech. I think I'm there too.

[Jessie]

You guys have no idea how much I feel like a weight has been lifted off of me knowing you guys understand exactly what we are going through.

I so wish this was the right thing for Jason, unfortunately it's just not.

Thanks!!!!


Jessie

[laurasnowbird]

You know Jessie, whenever I'm really struggling with something, I try to put myself in Ethan's place. I have to be honest here, and say that I would not even sort or like using a device to communicate with people. I suppose that if it were the only option that I had, I would do so, but only if it was truly my only option. At this point in Jason's life, he has plenty of people who understand him, and he is able to have his needs met.

If at some point, he was living away from you, and found that he was unable to be understood, he might be motivated to use a device, and I guess I'd cross that bridge if and when you come to it.

I don't think you are giving up, and you're FAR from being bad parents. You're a realist, and an advocate for Jason. Sometime advocating means saying "Enough. This is not helping my child. It's not enhancing his quality of life. It's a bother, and a nuisance. We're going to concentrate our energies on other things we think are more valuable."

This is not a decision you've made lightly, so don't feel bad about it. You guys are great parents!

Hugs, Laura

[Googsmom aka Jennifer]

{{{{{HUGS JESSIE}}}}}

[Emilysmom]

Jessie,
I don't see this situation as you and Brian "throwing in the towel" on Jason's communication at all. You have tried this method of assisting him with communication, and he doesn't like it. I think you just know him best and are respecting what he wants. So, no no no........you're not bad parents at all!

I can relate to what you said about the change in your dad's speech, after his stroke. My dad had a stroke several years ago that did not have any impact on his mobility.......just his speech. MOST times, I totally understand him, although his words can be slightly slurred. But to HIM, his words seem like they are as garbled as "mush" and he hesitates to even try. He would much rather communicate on the computer (Yahoo Messenger) than to ever talk on the phone, because he is so self conscious about it. It's odd to me..........cause I think Emily feels like HER speech is very clear and she doesn't always "get" why WE struggle to understand her.

Hugs to you and Brian,
Susan