We as a family attended a speech device camp last week called Chatter Matters!
What an amazing experience!
Click HERE for camp information
The camp staff was incredible: 5-6 speech pathologists, 3 of them experts in AAC devices, and then around 20 speech pathology students. All of these people plus the organizers of the event were available to help and work with our kiddos and us parents! Plus the camp brought in representatives from the various speech device companies to offer individual support for us and devices!
Our experience with getting a speech device is this:
1. We first applied for the device in Fall 2018. Jonah was eight years old. Prior to this, despite Jonah having significant speech delays, we had no knowledge a device could even be a possibility for Jonah. Sometimes I wonder the "what ifs" if we had started Jonah on a device at an earlier age.
NOTE: I always suffer from parent guilt about not knowing enough, doing enough, or pushing enough.
However, we were using communication boards with him from age 3 which is basically the non-tech version of a speech device. And given Jonah's mischievous and impulsive personality, eight years old probably was the the time maturity-wise to bring this piece of technology into his life.
2. We waited a LONG time for insurance to approve the device for Jonah.
3. Even though the device is officially prescribed for Jonah, our intent is to also use it for Ben. Could we probably apply for one for Ben also? Probably, but at this point we don't want to go through that involved process.
4. We finally received the device the 2nd week of March 2020. Please note that date: because COVID shut down the school and the world by the 3rd week of March 2020. This meant we had no support from the company to learn the device and how to use it. We also had no opportunity with school because those doors were also literally closed.
Then for the start of the 2020-21 school year, Jonah got sick with his kidney issues. Between Jonah being sick and us trying to keep both boys safe from COVID, the boys were virtual school from Sept 2020 to Feb 2021. When they did finally return to in person, everyone was in catch-up/getting adjusted back to in-person mode so the speech device was not the primary concern on any of our minds. So all this to say that since we got the device, I have just been bumbling along mostly on my own learning how to use the device and how to implement it into our boys' lives.
5. Sometime in the fall of 2021, I was very frustrated with the device. I felt like I didn't know what I was doing which meant I was also confused about what the device was suppose to be doing for the boys. On a whim, I googled something like "speech device camps or seminars" and up came a Google entry for "Chatter Matters camp". I opened it expecting it would be some camp in another part of the country. To my great surprise and excitement, this camp is at the University of Wisconsin Whitewater- just less than 2 hours away from our home!!!! I decided to apply for both boys to attend, and we got accepted! And our long-term care waiver covered the cost of the camp!
So that is the story of how we came about attending the camp.
Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides. Can you pick up on the favorite activity?
The schedule at camp was that in the morning the boys would do fun learning activities using their devices while we attended classes and seminars for parents. In the afternoon, there were family fun activities and then another seminar for the parents. Then in the evening there was a big event like bowling, dance party or talent show.
Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, outdoor/water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides. Can you pick up on the favorite activity?
Here is what the camp taught us:
Things we learned
1. Boys are at the point where the speech device should be used as an augmentation device
(clarifying what they are saying when someone can't understand them).
Click HERE for power point explaining the purpose/use of speech device
2. General/pre-programmed words/word lists are probably the best route to take because it is/will be too cumbersome to keep up with entering specific school lessons/current situations on the device.
3. Going along with #1 about device being used to clarify speech, if the boys can say a word clearly (ie. more, thank you, hello etc), there is no need to make them have the device say that word also.
4. Obviously verbal speech is the easiest and most efficient form to communicate. This means the boys will always want to use that option first and foremost, and this is ok. But the goal is for the boys to understand that the device is there as an additional communication tool just like sign language/gesturing or writing down their thoughts is an option for them.
5. Because verbal speech is the easiest and most efficient, use of the device-even with practice/training- will probably never feel fluid and completely natural. But this is ok. The "unnaturalness" of the device hopefully outweighs the sadness of not being understood or noticed.
Things we would like to see for use of device in everyday life:
1. Conversation Partner: "I'm sorry I didn't understand what you just said. Could you get your device to help me understand?" AND/OR
2. Boys access device when they are not being understood.
How do we get to that point?
1. Model device use wherever we can, even for the simple words just to emphasize the point that device can speak for a person.
2. Set up situations at home/school where even if we know what the boys are saying, we say "I'm sorry I didn't understand etc" and then help them use device to clarify what they were saying. By using a situation where we know what they are saying but we pretend we don't, we can be accurate in helping them search for the clarifying word.
3. After a successful phase of set up situations at home/school, then try set up situations out in the community where the environment will be more variable but the person they are speaking to will be a "plant".
4. Hopefully, eventually, because boys will have their devices accessible to them, then when someone can't understand them, either that person will request clarification by the device or the boys will do this on their own initiation.
Things needed for the above training
1. Constant use/access to the device at home/school and eventually out in the community
2. Peer training?
3. Staff training?
4. Family Training
5. More inclusion of the speech device in the IEP?
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