This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Monday, September 29, 2014
No Fear We Have New Gear!
I've always had so many fears about using a communication device with Jayen. In my heart I feel that some day he will have verbal communication. I'm not sure when that is, but some day he will! I use sign language with him and try to always pair it with its verbal equivalent. When the school system suggested an iPad with a communication application, I was hesitant. I never wanted to teach Jayen how to communicate with something then it not be with him every time he wanted to communicate. I was also worried when we found out we were moving. The iPad he had been using belonged to the school district. All of the vocabulary pages we have created for him and he has learned to navigate would be lost if I didn't get him his own device before we moved. Well today a few of those worries are calmed. Today Jayen received his own communication device. We went with the iPad mini so it would be more portable for Jayen. Hopefully this will be easier for him to have it with him anytime he wants to communicate. We were also able to put his current vocabulary file on this device, so everything that had been programed on the old device is now on the new one. I'm excited for Jayen and what this opens up for him, but I am sill hopeful that some day I will wish he would stop talking!
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