Wednesday, July 30, 2008

International Fragile X Conference, Part Four

Saturday morning, we overslept a bit and missed the general session. I left first for the conference area. On my way to getting a cup of coffee, I saw Frank. He said he and Isabelle made it to the general session no problem. They were bright-eyed and bushy-tailed. (or something like that) I got my coffee and went to my first session of the day, Ten Great Tools to Help your Child with Fragile X Learn to Read and Write. Dr. Ave Lachiewicz and a mother of a child with Fragile X led the session. They recommended the use of a clipboard or a slantboard with a clip for wrist stability. And for keeping the paper in place. And since our kids are such sensory guys, they suggested placing a sheet of sandpaper or plastic craft canvas under the paper, so they'll get sensory imput from writing. Another item they liked was the vibrating pen. I spoke briefly with a therapist after the session and mentioned that Drew would have the vibrating pen in his mouth. She said that was ok, that they usually will get some stimulation from the pen, then are able to write better. For reading, a mother in the audience suggested old fashioned Dick and Jane books. They recommended the use of the DT trainer, which is based on the Discrete Trial protocol. Another website that was mentioned was It is a phonics program with visual supports.

After that session I headed to Understanding, Assessing and Treating the Communication Challenges of Youth with FXS. I got there a bit late, so I sat in the back of the room. I honestly must have zoned out for this session, because I can barely remember the content.

Next I met up with Eric, and we went to Hard Rock Cafe for lunch. We saw quite a few people from the conference there. We ate and got back in time for what was my favorite session of the conference. Isabelle and I sat together, and Jeanine Coleman went over a study that concluded that mothers of kids with Fragile X are overly emotionally involved. We didn't think a study was necessary to tell us that, but whatever. Then, a woman named Cindi Rogers came up to the front. Her part of the session was called Life in Mrs. Rogers Neighborhood: Raising Two Boys With Fragile X Syndrome.

Cindi's sons are teenagers. (17 and 19, I believe) She has developed many practical techniques to help her sons become more independent.

Some things she has successfully used are:

A visual reward program. A sentence strip with the pictures: No hit, No kick, No yell= reward. She started using food as a motivator, but moved on to dollar bills. It has been quite successful for them.

Her sons have chores. She made a list of steps to feeding their dog for one of their sons. Another one had step by step visual instructions for taking out the trash. Each task ends with "All done".

She uses a calendar for where they are supposed to be each day. A picture of a bus means school, Fridays have a picture of Applebees. And any other activity can be filled in with a picture, such as a haircut or visiting friends.

A shower chart has helped her sons be in charge of their own hygeine. She has a picture of each body part and has them in one column on a velcro strip. When they finish washing that part, they move the picture to the "done" column. And the pictures are laminated and hang right in the shower!

I have already started on this idea Cindi had. She put all of their videos in a library, and made a binder with pictures of all the videos they have available. That way they don't get out 101 DVDs, but they can pick a certain number from the visual list, and swap them out as desired. My own boys love to flip through the DVD case to choose their own DVDs, but many have been broken this way. So, I have collected pictures of each DVD we have, and am going to print them and put them in a binder for the boys to have access to. They will be able to flip through the book and choose from the visual list!

She has them put their clothes for the following day in a box so it is all together, and they don't have to go looking for each thing. And they put it in the box in the order they will need to put them on. Underwear on top, then shirt, pants, socks, then shoes. Brilliant!

She had so many great ideas, I could go on and on. In fact, I believe I will. Later.


Umma said...

Wow, there are a lot of really great ideas here! Thanks so much for sharing!

Mark said...

sounds great! any pictures you may need for movies, and foods, i may already have and I can e-mail them.
That could help in long item searches. Let me know. Great to hear all about the conference.

Jen said...

I guess I can happily say that the boys already do well with the things that were mentioned, yay! Of course, we still have Evan that will be getting to those issues in the near future; I like that shower idea! A system for Kyle and his dvd's would be nice, although his issue with them is a little different. It's not that he looks through all to find one; he likes to carry a stack of about 15 dvd's with him as much as we'll's a security thing for him. For example, if he has to go upstairs to brush his teeth, the dvd's go with him! And then he brings that back downstairs when he's done. He sometimes will bring them in the van when we go somewhere if I'm not paying attention. Actually, he does fine if I tell him that they have to stay home; it's more of a habit than a need. So, maybe it all boils down to laziness on my part for not being more persistent about him leaving his dvd's in one spot!

Leanne said...

I was in that session(Mrs Rogers) and also enjoyed it. I was really reminded just how much our boys are visual learners! I'll be busy working on picture schedules and such in the coming weeks!