Daily Living Tips

Living Life One Day at a Time

1. Many of the children hate to be bathed.  Don’t feel like you must do it every day.  You can buy dry hair shampoo and no rinse soap.  These are good to have for hospital stays.
2. As their balance starts to be affected and you are bathing or showering have them wear water shoes.  They grip the floor and will reduce falling.
3. There are obvious steps that you will have to modify for wheelchairs but we found several places that we never even thought of as we used the chair.  We made small “ramps” in all these places.
   • bottom of the driveway often has a lip
   • getting into the garage
   • getting into house from garage
   • doorways in your house
4. As balance is affected it is often hard for them to stand while cleaning after the bathroom or getting on clothes.  We had a “stander” built with handles they can hold freeing your hands.
5. Have a paragraph about Batten disease along with a description of your child and their medications in your car, purse….If you have to go to an ER they often will not have heard of the disease, will ask questions you don’t want to answer in front of your child, and think how they are at that moment is their “baseline”.
6. Sometimes their behavior in public can be embarrassing.  Have business card size cards printed that you carry.  Small explanation of Batten that you can hand to people.  You are spreading awareness as well!
7.  Cloth napkins!  They are messy eaters and the paper doesn’t cut it.  I send some to school with them.
8. Flushable wipes.  You will find their muscles to be so tight that toilet paper won’t cut it anymore.
9. Disney movies now come with a descriptive option under “languages”.  This is a feature that will describe what is going on in the movie as it happens.  This is a feature that is also available in the theaters.  The kids wear headphones.