We got a great booklet in the mail from the Cystinosis Research Foundation on cystinosis and the brain. I knew very little about cystinosis and the brain before reading the booklet so I felt pretty lost. The booklet helps me be aware of the neurological problems Sam and Lars may have difficulty with.
Sam has been having difficulties with his speech and it creates a lot of frustration for him. In August he was approved for an IEP (Individualized Education Plan). The first time he went through testing I was told he is bright and most likely will not qualify. I asked to have testing done a few days later because I was most concerned with his speech and I didn't think they spent enough time in that area. Different therapists tested him the second time, and sure enough he qualified. He's a sharp kid -- just unintelligible. Since then he has been attending a special preschool one day a week to help him with oral motor skills.
Stephen and I found the game Cariboo at DI for $2 last summer and turned it into a speech game. Not my idea. One of Sam's old speech therapists had the brilliant idea so we copied her. It has worked well to motivate him with his speech.
In short: Sam puts a few bouncy balls in the three holes at the top and they filter down to one of the squares. Sam has a special key that opens up each square after he says the word. If the square has a ball, then he gets to put it in the right side hole. When the hole is filled the treasure box opens and he WINS!!!! I put stickers in the treasure chest. Candy is never a motivator for him.
I made my own cards for the game. It didn't take forever (sometimes I lie).
It has been a real hit. Mission accomplished.