Feedback on Augmenative Communication Devices

[Guest guest]

I am not sure if any in the group has purchased the Vantage Lite for their

child. My son is currently in a trail using the device which is up in a week.

The device costs 8,000 and ins. will only cover 2,500. We have been working

with Children's Hospital Boston Augmentative Community Center and they

recommended this more advance device because they feel that his current tool,

itouch/ipad with Proloquo2go software, will only take him so far and that this

more advanced tool will benefit him now and later.

If it is something that he needs they we will figure out how to make it happen

but my concern is in a year or so when he can start to leverage the more

sophisicated capabilities of this device, his language be at a point where he

won't need it. And in that case then the Proloquo2go would have been what we

needed for the interim.

I know that no one has a crystal ball and can tell me where my son's languague

will be in a year but I didn't know if any others had any experience with these

more high-end devices and using them with their apraxic child.

My son, , is currently 4.5 years old. He has evals by everyone and he has

verbal and oral apraxia dx, along with global motor planning issues and Sensory

Integration issues. We have been in speech theraphy since he was 15 months old

with Early Intervention. He currently is getting weekly 3x30 speech theraphy

sessions in school and has been since he was 3. He also gets weekly 1x60

privately. He has about 40 word approximations. He can't get the last c in the

cvc combinations. I have been trying to find a spl who specializes in PROMPT in

our area but have not been successful yet. I started fish oils in August and

have seen slight improvements (mostly in behavior). I also plan on trying NV in

the near future but haven't yet.

Any feedback I would greatly appreciate.

Thanks,

Joyce

[Guest guest]

My daughter is 9yo now. She's had a Dynavox V for almost five years now, that is

also an $8000 device. I can't tell you where your son will be in a year or more.

My daughter was not speaking at the age of five years old, so the fact that your

son is saying 40 words or more, is very encouraging. She wasn't speaking and was

mostly signing but between the age of 5-6yo, her speech tripled--with two word

sentences she had never used before! She has Medicaid, as a child with a

disability. So that coverage and our family insurance covered the $8000 in full.

If your insurance will only cover that amount, consider looking for other

funding in the community or fund raisers for the cause. Places like Easter Seals

and Knights of Columbus are known for making donations for the needs of special

kids.

The other thing I'd mention is the portability of a Vantage Lite. The Dynavox is

sort of heavy and cumbersome for a kid under 10yo to bring to school! Also, once

she started talking more, the Dynavox was used less and less. She doesn't bring

it to school anymore! I'm very surprised that anyone is trying to dissuade you

from a IPod or IPad! They're much more portable and with the Prologue2Go, I'd

think you have everything he needs! I've heard of school districts purchasing

IPod Touch's as AAC Devices since they are so much easier to bring around than a

device like a Dynaovox!! I dont know--how portable is the Vantage Lite? Can he

get it to school on his own? I also worried about such an expensive device being

transported back and forth! At least an IPod Touch is a little easier to

replace!! Medicaid will only cover a device for her every five years, so if we

work on a device in the next year or so, I'm planning on an IPod Touch or IPad!!

Maureen

>

> I am not sure if any in the group has purchased the Vantage Lite for their

child. My son is currently in a trail using the device which is up in a week.

>

> The device costs 8,000 and ins. will only cover 2,500. We have been working

with Children's Hospital Boston Augmentative Community Center and they

recommended this more advance device because they feel that his current tool,

itouch/ipad with Proloquo2go software, will only take him so far and that this

more advanced tool will benefit him now and later.

>

>

[Guest guest]

Hi ,

Sorry for the delay and not sure if I have the time even now to write a complete

response to this, but at least wanted to get started and let you know of our

experience.

We are in the process of getting the funding packet together for a VL. I fell

in love with it late May but with his therapist having the summer off, she

wasn't able to do the documentation to support funding until now. We're in PA

so our little boy qualified for medicaid based on his developmental delay and

they will pay what private insurance does not cover, if the medical need is

adequately documented.

DS is not three and a half, and only has a few words, has several sounds in his

babbleing/jargoning repertoire, and has global motor delay with oral being the

most involved, is ataxic and perhaps has mild CP. He has normal receptive

language and his 2 speech therapists think he has normal, or relatively good

cognitive skills.

We have every hope he will become a functional speaker, especially since joining

this group and adjusting his EFA's and getting him on NV along with some other

biomed stuff we have in place or will soon implement. And he learns signs very

quickly once I started putting effort into giving him the opportunity to learn

them.

This is why we do signs and why we want a speech generating device:

*We want his language, cognitive, and social skills to continue to develop and

not be held back by his severe speech disability.* (Of course with signs we

want a sound approximation paired with it and will do that as well once we have

his device.) It's been amazing to me to see how he gains understanding of

concepts once he has a way to manipulate a word for it, like learning the sign

for tomorrow helped him understand the concept of future. I've seen that happen

repeatedly. Plus, others see that he really has things to say, is creative and

bright, and they interact differently with him than when he doesn't have a way

to let people know some/a fraction of what's going on in his sweet, bright

little head.

We had trials of many different devices and I felt so sad by what they offered.

Then we got a loaner VL, and I really immersed myself in Prentke Romich web site

which has tons of information to help learn the Unity Program it uses. What an

elegant and robust program. Is is perfect? No. Doesn't even come close to

replacing the ability to freely speak. But once you get the hang of how it's

set up, it really offers an easy way to access a very large vocabulary. I found

dynavox to be more page based, and you can certainly create custom pages on VL.

But DS already demonstrates the ability to sequence and navigate around the

device and it will be worth the front loading effort of helping him learn where

words are within the Unity program so he can " create spontaneous novel

utterances " , ie decide for himself what he wants to say, not pick from a few or

several preloaded phrases that we think he might want to say.

I hope this helps some.

Best wishes, Jess

[Guest guest]

Hi Jess,

Thank you for your input. It is valuable and appreciated. I am in the process

of looking into additional funding. I would ideally like to go with the vantage

lite but with the Proloquo2go being adequate for the moment unless I can secure

additional funding might be the direction we go with until we reach it limits.

And who knows if then ’s speech might be further along.

Again thank you.

From:

[mailto: ] On Behalf Of Jess

Sent: Sunday, October 10, 2010 10:05 AM

Subject: [ ] Re: Feedback on Augmenative Communication Devices

Hi ,

Sorry for the delay and not sure if I have the time even now to write a complete

response to this, but at least wanted to get started and let you know of our

experience.

We are in the process of getting the funding packet together for a VL. I fell

in love with it late May but with his therapist having the summer off, she

wasn't able to do the documentation to support funding until now. We're in PA

so our little boy qualified for medicaid based on his developmental delay and

they will pay what private insurance does not cover, if the medical need is

adequately documented.

DS is not three and a half, and only has a few words, has several sounds in his

babbleing/jargoning repertoire, and has global motor delay with oral being the

most involved, is ataxic and perhaps has mild CP. He has normal receptive

language and his 2 speech therapists think he has normal, or relatively good

cognitive skills.

We have every hope he will become a functional speaker, especially since joining

this group and adjusting his EFA's and getting him on NV along with some other

biomed stuff we have in place or will soon implement. And he learns signs very

quickly once I started putting effort into giving him the opportunity to learn

them.

This is why we do signs and why we want a speech generating device:

*We want his language, cognitive, and social skills to continue to develop and

not be held back by his severe speech disability.* (Of course with signs we

want a sound approximation paired with it and will do that as well once we have

his device.) It's been amazing to me to see how he gains understanding of

concepts once he has a way to manipulate a word for it, like learning the sign

for tomorrow helped him understand the concept of future. I've seen that happen

repeatedly. Plus, others see that he really has things to say, is creative and

bright, and they interact differently with him than when he doesn't have a way

to let people know some/a fraction of what's going on in his sweet, bright

little head.

We had trials of many different devices and I felt so sad by what they offered.

Then we got a loaner VL, and I really immersed myself in Prentke Romich web site

which has tons of information to help learn the Unity Program it uses. What an

elegant and robust program. Is is perfect? No. Doesn't even come close to

replacing the ability to freely speak. But once you get the hang of how it's

set up, it really offers an easy way to access a very large vocabulary. I found

dynavox to be more page based, and you can certainly create custom pages on VL.

But DS already demonstrates the ability to sequence and navigate around the

device and it will be worth the front loading effort of helping him learn where

words are within the Unity program so he can " create spontaneous novel

utterances " , ie decide for himself what he wants to say, not pick from a few or

several preloaded phrases that we think he might want to say.

I hope this helps some.

Best wishes, Jess