Friday, November 4, 2011


I made the appointment at Children's Augumentative Communication Program. Chris and I had Cj's speech therapist and physical therapist meet us at the hospital. I was so excited about this day, I could not contain myself. I have had many conversations with my son about this day and he was just as excited. I told him, I know you're going to prove to the world someday just how smart you are. Someday you will be able to speak your mind, just you wait! He always giggles and beams when I say "Who knows, maybe you will be the president of the USA someday."

We all walked into the very small evaluation room. There were two specialist's whom took to Cj right away. They spoke with his speech therapist first and she said he had a short trial on the Dynavox and he had some difficulty navigating the screen. She decided to continue using communication boards and books for more practice. I stepped in and told them I have been using many methods of communication since he was 6 months. When I realized he could not speak (he has very few words) I used eye gaze boards that I made when he turned one. I spent every day training him to look at objects, to make choices and to point to objects which he mastered. I did many hours of research and emailed many parents with non-verbal children with many different diagnosis' and asked them which communication device, if any worked for their child. I told the specialist that the Tobii C1 had the best results with children that have similar issues as CJ. Some children with Lesch Nyhan can speak, however many can't.

The specialist then tested Cj's eye gaze using boards, watched him watch a video of Dora and decided to test test him on the Tobii C1. Both therapist's and my husband were a bit nervous, I was not. I had a gut feeling this was it. They brought in the Tobii and hooked him up with the screen in the right position and he picked it right up. They asked him where Dora the explorer was and put her in many different positions over the screen and he nailed it each time. When he looks at the screen a red dot comes up and goes over to his choice and speaks for him, "Dora". Then they had a screen come up with four choices, play with toys, watch a video, do nothing and all done. He picked play with toys and then a drum, bubbles, a ball and a book came up on the screen. He went right to bubbles, he LOVES bubbles! The computer said,"I want to play with bubbles" he beamed and looked at everyone in the room and laughed. There was not a dry eye in the room. I said I told you so! His ST and PT could not believe how well he did, especially with seven people staring at him. Cj had a few more tests and nailed them all, picking all his favorites with ease. They even tried to switch things up, he proved them wrong. We are going to rent the device for a few months through insurance, then if all goes as well as expected insurance will pay for one.

So watch out world! Cj has 8 1/2 of years of telling us what he has thought of, what he thinks about and most of all, what he wants. I hope it is all! Ryan said the other day, "Mom, I can't wait to talk with Christopher!"

Thursday, October 13, 2011

A Whirlwind Summer!

Our summer plans for the most part did not pan out at all. My husband had to end his business due to China. He has had a very successful plastics manufacturing business for 25 years. It took him all summer working every day to shut it down. This week it will be a reality. We really had to buckle down with expenses so family vacations were not going to happen this summer.

I made sure we still had lots of fun! Ryan went to a summer day camp at the beach for 6 weeks and made lots of new friends. Cj went to summer school for six weeks and in between we lived at the beach or friends pools. Thankfully the beach is basically one block from us and we have three beautiful beaches to pick from that are in walking distance. We also had lots of fun in the new van...but my god it cost a fortune for gas in these huge conversion vans!!!

While the boys were in school and camp I helped a friend open a new gift shop downtown! I helped design and decorate the shop, which is right up my alley. I am now working on my artwork to sell and I am also working at the store now 3 days a week. I love it!

Cj has had a tough summer with this new diagnosis. His behavior was off the charts, trying to hurt himself more and others at school. We brought him into Children's Hospital and they put him on a anti-anxiety medication that has made a world of difference! He is calmer and more alert, just in time for our eye gaze trial at Children's Communications lab next week. I can't wait, as I am keeping my fingers crossed that we find something that will work. I know we will, he has been practicing for 3 years and he is ready. When I told him where we were going and what for he beamed and laughed so hard I cried!

Both Ryan and Cj have grown like weeds over the summer! Ryan loves first grade and is doing fantastic academically. He is great with numbers, must take after my Dad. Cj loves school too, he is just frustrated because of his lack of words. Watch out everyone, just you wait and see!

I will keep you all posted on his trial and what we come up with! My husband has some great connections and is looking into many great offers. I know he will find the right fit! I am looking forward to many new beginnings.

Friday, June 3, 2011

Cj's 8 years old!

I can not believe Cj is eight years old and Ryan is six. He had the best time at his Birthday party, the best party yet! He is getting to be such a socialite compared to many years of crying and just wanting the party over. He does not want any party to stop now! As you can see, Ryan now insist on wearing a suit jacket and dress shirt to all Birthday parties. Too funny, he takes after his Papa!

Life really does go by quickly, so this summer I plan on having lots of fun! We have the van now so life really is easier. Both boys are out of school in a couple weeks. Ryan has camp in early July and August and is going to give soccer camp a shot! Cj has only 4 weeks off from school so I am planning some trips. I am planning a three day camping trip in Maine or New Hampshire. My husband hates to rough it, but I want the kids to try sleeping in a tent, looking at the stars, cooking marshmallow's, fishing and then hopefully eating some fresh fish on the grill. I will try to find a camp ground with a shower and toilet for hubby. However, I still think we will end up in a hotel! We also plan to spend a couple weekends in Maine with my sister in law and most definitely a couple trips to Cape Cod.

One of my favorite places on earth is Chatham, down the Cape, where I spent most of my summers growing up. We have friends to visit and many place to go where I reflect on some of the best memories of my life. We also plan on fishing, shopping, lots of beach time and eating at some great places. Someday I hope to buy a small place in or near Chatham. It's a dream, but you can dream and sometimes they do come true!

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.

Friday, March 25, 2011


Cj LOVES the iPad, and so does Ryan! At first Ryan would sit for an hour or so and help Cj play, but Cj gets it now and loves to play by himself. He has his apps, Ryan has his. I found a great elbow support I am going to order from Rifton for his right arm, but I am still looking for the right stand for his tray. I also purchased the Otter Defender Case, very durable, a must!

Cj is bowling really well now. It's so great to see him finally interacting, and really enjoying himself on his own! They still play together, but Ryan has become a pro at games I can't even figure out. He wants to learn chess, and yes, he said he is going to be a computer nerd and wants to go to MIT summer camp. My Dad has a friend who sends his grandchild, they both go into MIT just to watch the kids. Ryan (6) asked my father if he could go, at $8000.00, I don't think so.

Instead, I signed him up for soccer and T-ball just to see if some sports will work for him (he is so active), he will also go to a summer camp a few blocks away with some friends for a couple weeks during the day. I told my Dad, if he really wants to go to MIT camp he will need to get a job, and do a little fundraising. He is still too young, thank you!

Here are some of Cj's favorite iPad apps: Yes/No, Action Bowling, Talking Tom, Goodie Words, Peekaboo, Baby Shapes, Tap to Talk, Bubble Free, Doodle Buddy, Fireworks Lite, Kids Piano Lite, Pocket Pond, Fluid, 123 Kids, Word Family, Talking Roby, Magic Piano. Buddy#1, My First Words, Baby Writer, Actions, Motion Book, Sound Touch Lite, Talking Gina, and Colorful Aquarium, just name a few, and most of these apps are FREE!

P.S. Ryan is finally over the stomach virus after 7 days, Cj is still sick, Mom and Dad are alright so far (besides being exhausted), knock on wood!