Kaiden is one really cool, smart little 5 yr old! He lost his speech due to Infantile Spasms, which he had from approx 7 mo to 16 mo of age. His first (and last) word with intention, was "Mama", said 3 times over 2 days at 11 mo old -December 17 & 18th, 2009, the best Christmas present a Mom could get! Since then, it's been 4 years. He's occasionally talked in his sleep, but nothing while conscious. The diagnosis: Down Syndrome, an educational diagnosis of autism, and (what impedes him most) speech and motor (limb) apraxia. Having speech and motor apraxia means that he is unable to talk or sign. He wants to, but his body isn't letting him. In the meantime, he invented his own nonverbal physical language. It's taken us a lot longer to understand it than it took him to invent it! Recently Kaiden's begun working with the LAMP (Language Acquisition through Motor Planning) system on a Vantage Lite loaner unit. He's picking it up a lot faster than expected, which is fantastic and tells us we are on the right path for communication with him. Unfortunately, loan time is up and the unit needs to go be loaned out to other families. We are hoping to purchase a unit from PRC https://store.prentrom.com/
and they are NOT cheap! :( We are asking for help raising money for the mid-range price of units and accessories; with Kaiden's low fine motor skills, he will need a TouchGuide too.
Please know that we have researched a lot to find Kaiden the device that works for him. Many of our supporters have suggested using an iPad with an app instead as it is a much cheaper option. Unfortunately, the iPad is not built for those with Kaiden's specific motor apraxia issues and is not a viable option at this stage.
All help is greatly appreciated!! Kaiden shows us every day he has things to say, and we can't wait to hear them! :)
Updated: we are hoping to work with some organizations that help with funding, as we don't qualify for MA and would have a very sizable copay with TEFRA. Any excess funding will be used for Kaiden's additional needs: The yard will be fenced in this spring; Kaiden is a "runner" - the county is helping us with partial funding for that project. :) At this time, although we would like to, we cannot afford extra therapy services outside what the school system provides for free. Kaiden is also on a range of dietary supplements that he will need for life.
Here's a link to our article in the Albert Lea Tribune about the fundraiser! http://www.albertleatribune.com/2014/03/technology-aids-in-teaching-disabled-boy-to-learn-words/
Here's a link to our feature on the KAALtv ABC 6 News! http://www.kaaltv.com/article/stories/S3353990.shtml?cat=10151
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- Jeanne T
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