Wednesday, July 30, 2008

International Fragile X Conference, Part Five, or Mrs. Rogers' Neighborhood, Part Two

Ok, so I am back with more things I learned in Cindi Rogers' session. She just had so many practical ideas.

Her one son likes to help unload the dishwasher, but got extremely frustrated when he had trouble getting everything in the right spot. So, she took a picture of the inside of each shelf as things should be placed, and attached the picture to the door of the cabinet parallel to each shelf. When he was going to put the dishes away, she made sure he opened all the cabinet doors before he started.

They realized they like camping as a family. God bless them for even trying it in the first place! I get hives at the thought of roughing it with two fraggles. This woman is golden, man. Ok, so they got a poster with an outline of the USA, and filled in each of the states they've visited. And I'd say they've seen at least half of the states in this country. They bring their picture schedule with them, and that helps her sons transition easier.

Other things they did to help them self-regulate was to put them in compression pants. They wear UnderArmor under their clothes every day. She said they have used the Wilbarger Protocol with them at various times throughout their lives.

Cindi and her husband have made adaptations to their home to make their sons more independent. For instance, when she and her husband retire, they are going to move, and allow their sons to stay living in the house. They will already be familiar with everything, and she and her husband will have made every adaptation they can think of before then.

They removed the bathtub from their bathroom and replaced it with a stand up shower. She said her sons have some difficulty getting in and out, so removing the tub made this a lot easier for them.

They also installed a tankless water heater with a shower thermostat, so her sons would be able to set the heat to a comfortable level. It gives a number readout for the temperature you choose, so it is more concrete than just turning a dial to a comfortable spot. They both know how to set it to their number.

A lot of her suggestions used visual supports, and of course, individuals with Fragile X really benefit from that. I am going to try to implement some of her ideas or adapt them to fit my boys' needs. It's just going to take a little time to process it all and make some adaptations.


shoeaddict said...

Wow, I'm sure that this woman did give you a lot to think about. Lot's of things to do to help make your life and the boys easier. I'm glad for you.

Anonymous said...

Thanks so much for recapping the conference. I would have really, really liked to have gone. I've really enjoyed reading--and learning from your posts.
Peggy E.