Help Kaiden talk!
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
We still have not received the final bill for Kaiden's speech device. I called PRC for an update last week - the claim has been submitted to BCBS twice, and BCBS now has until Jan 16th to respond. Next up finding out why BCBS is dragging their feet when we went to all the trouble of escalating the case, getting it reviewed, getting approval, getting the waiver to have PRC treated as an in-network provider.
Our family does an annual golf tournament to raise money for kids with Down syndrome. We have a seven year old son with ds and apraxia. If you contact the ARC of SE MN in Rochester and ask about the Seth Pack Golf Classiv grant, you can apply for a $200 grant to offset some of your costs. We would be happy to approve that. Good luck!
So sorry to hear of your struggles. My son also has speech & motor appraxia. He doesn't have the other conditions your son has, it must be a daily struggle for you. It's rare to find anyone who even knows about apraxia! I'm assuming you are already bringing him to OT and PT specialists? My son has had to go back to Polinsky Rehab center up in Duluth several times through out the years-but their therapy center is amazing. The last treatment was him listening to a special music cd while reading any book....it's amazing what our brains are capable of doing. I wish you the best of luck, it's a long journey, but with a little love and patience--he will thrive!
Have you checked with ABC here in Rochester? They may have other toes of devices to try at a more reasonable price. Also check with Dynavox. Good luck to you all and hope you reach your goal sooner than later.
You can buy an iPad or Ipod and install Proloquo2Go from the Apple store on the device. It has the cool factor because it is on a device that many others use and you can use the Ipad or Ipod for lots of educational apps. It talks and has pictures to touch. Over 75,000 individuals are using it. Several of my friends that have kids with disabilities have used it for their children. Easy to use and so much cheaper and more versatile. Good luck on helping your precious guy find his voice. Contact me at firstname.lastname@example.org if I can help answer any questions and put you in touch with a mother whose child uses the device.