Wednesday, April 27, 2011


I must tell you, I am still overwhelmed with happiness about Cj's IEP meeting! I wish my husband was there. Chris was at work, as I usually do all the talking! This is the meeting I have been waiting and dreaming about for four years. At first I was saddened that his classroom was so small, only five children. Many seem to have little cognitive ability. His teacher and ST are very young, but extremely bright and are on top of all the new learning skills and teaching methods (just what he needs), his OT is wonderful and has worked with Cj when he first went to this school, his PT is brilliant and has worked with Children's!

We started the meeting talking about how well Cj is doing health wise and how we are practicing eye gaze exercises and how he is doing great on the ipad. I told them my main goal this year forward is COMMUNICATION, period! He is going to be 8 years old next month, he is in second grade and it is about time we work on some devices! Both my husband and I have always been the biggest believer's in Cj's intelligence since the get, and I have been pushing the communication issues for a few years! The ST told me that they just did a small trial with Cj, there was some extra time left with a specialist that was at the school trialing a Head Mouse on another student. They put a small sticker like circle on Cj's forehead and a camera on the computer that picks up any movement from the sticker and it is shown on the screen. The ST told me he picked it up right away and was swirling the cursor around the screen and smiled, it was like he thought the computer was reading his mind! I was amazed, I had no idea he had this trial! I think she was waiting for the IEP to tell me. She said that because his head control is pretty good that this method of communication should work with a lot of practice, I have to see this to believe it. They are going to schedule a trail at the school so I can witness this miracle!

The ST thinks that the Head Mouse may be the way to go since when using an eye gaze device the head has to be very still, and Cj hates the wrap they have to put on him to keep him still. He loves to move because of his dystonia, so it kind of makes since to me. I am still going to the Children's Hospital communication lab with the ST to trial every device, eye gaze and the Head Mouse.

This year I have a great feeling this team is going to do wonders for my son, as they all BELIEVE in him and know how smart he is. They are pushing him to learn as he tends to want to play. He is now working with two switches, YES/NO consistently and appropriately. A little boy came over and stole his lunch one day and Cj pressed NO three times, the boy brought his lunch back and he pressed YES. There were many stories like this that blew me away! Past IEP's were not that bad, I've been lucky and have loved all his teachers. I just think it's Cj's time to prove to the world what he can do, and I think his team does too! Each person had so many wonderful things to say about Cj, I thanked everyone and walked away on cloud nine! Finally they all believe in Cj and he is just exploding with confidence and proof that he is smart, we were all on the same page.

PS. I threw in a few photos of Cj's new wheels! He can now see the world a little better and we do not have to break our backs.


  1. Great pics of Cj...of course, you need to mention that mom and dad are the biggest in the believer's group. I'm pleased the IEP meeting went well, as many do not...keep up the efforts on the communication front, as there are many options and they grow daily.

  2. Thanks Phil, I did add that we are the biggest believer's!

  3. Feeling your happiness here! Thank you so much for sharing this experience and the specifics of choosing between access devices. I found it helpful since AT for communication is not my specialty. Barbara

  4. Lisa, so happy to read this! I see that CJ and Max have similar tastes in minivans and bandanas!

    On another note: You won the Gilt Groupe giveaway! Please email me your email!