Rett Syndrome Parent Tips: Transportation
Rett Syndrome: [Main] [Contact Us] [RS Site Index] [Calorie Boosters] [Claire's Story] [Cookbook] [Letter] [Tips]
Taking Claire places can be very difficult. If Claire isn't well-restrained in a vehicle, she enjoys wiggling until she's gotten out of her car seat, booster seat or seatbelt, so it is a challenge to keep her restrained! We are currently using one of the largest commercially available car seats, one without sides on it. We figure that it will work for another couple of years before we have to buy one of the extremely expensive specialty carseats for young adults with disabilities.
We have a Dodge Grand Caravan minivan. We removed the middle seats, which gives Claire plenty of room to walk into the van and get into her seat with very little help. I was finding it more and more difficult to lift Claire in and out of regular cars, and it was difficult for her to get in by herself. Also, Claire developed the habit of kicking the seat in front of her, and now there is no seat in front of her, so she can't.
The minivan is perfect for long trips, too. We placed a rug over the seat tracking in the floor where the removed chairs used to be. This allows enough floor room to change Claire's diapers during rest stops, and gives us plenty of room for a cooler, TV/VCR and a tape rewinder. The TV/VCR is attached to the DC outlet in the rear of the van (using a DC outlet extension cord) and the tape rewinder is attached to an AC/DC adapter which is attached to the DC outlet in the front of the van. The TV/VCR combination is excellent for keeping Claire occupied on long trips and the tape rewinder is critical for making sure there is no interruption in video viewing. Claire's sister, Jill, also loves watching videos while she travels. To complete the setup, we have mini-speakers attached to the TV and mounted behind the girls' headrests. They can hear the videos but we can't.
The minivan also features built-in cup holders next to the bench seats in back, so we put finger foods in the two cups next to Claire, so she can finger feed herself at her own pace. When we stop for fast food, we put French fries in one cup and chicken nuggets in the other. They are easily cleaned with baby wipes while moving, and wet paper towels during rest stops.
Copyright © Deborah Schilling