reflections related to disability advocacy, family and (needed) cultural change
Tuesday, February 10, 2009
Try This Tuesday: Showers of Independence
I love a theme song!
Let's just say that all goals are not created equal. We have goals for our children that are temporary, showy or that prove eventually to be less important than we thought they would be when we thought them up. Achieving as much independence with hygiene as possible is not one of the silly ones--it is safer to be able to do private things more privately, it is terrific for self-esteem and it makes life easier to engineer for everyone. Granted, as much independence as possible looks different for every person with a disability, but this is an area where efforts are seldom wasted.
I look at hygiene as sort of a tonesetter kind of goal--are we into finding a comfortable routine for our family or do we have a continuous improvement mindset? (Neither of which is right or wrong--or necessarily permanent, they are just different approaches.) Our family has moved between these two mindsets as life has evolved, and will continue to do so, I am sure.
To work on hygiene goals you can take one of two approaches. You can start from the bottom up, write a plan that begins at the beginning with Step 1: Gather supplies and ends with Step 37: Put on your pajamas. Or you can begin with the routine you have and tweak it constantly until you have ARRIVED. Which approach you choose depends on your child and your family and what you are trying to teach.
With bathing we took the tweaking approach. We started many years ago by just handing my daughter the washcloth and having her wash her face and grew things from there.
Many things needed tweaking as we went: -We moved her from showering in the tub to the shower stall when we realized stepping over the side of the tub really scared her. -We went from sitting nearby and handing her a towel to dry her face 1000 times/shower to hanging one where she can reach it. -We tried one of those shower mirrors to see if it helped her get the soap out of her hair (it didn't so it's gone...) -We moved from cuing, to asking what's next, to not being in the room. -We still have some tweaking to do--we just recently marked the safe temperature range on the faucet so she can set the water temp. herself (She knows to test the water with her hand, but I still kept looking for something we could teach her that would apply anywhere--couldn't figure that out so resorted to marking the faucet... will be tweaking again when a new idea comes along.)
And the beat goes on...
My friends whose kids have different disabilities are also increasing independence in highly individualized ways--and tweaking things as they go. My one friend has been teaching her son who doesn't move independently to direct the process--and she has had to modulate his approach so he doesn't drive his caregivers away (think about what a great lesson this is--management training! He will know how to be a boss when he's done!)
The big question is usually quality control and my rule of thumb is that most things missed today can be caught in tomorrow's shower... sometimes we send her back (we have done this with others of our children over the years as well)...
The only big rule is once they are independent with something try as hard as you can not to take it back. In other words, unless there is an emergency (and how many shower emergencies are there really??) we don't go back in... ever. This has meant rinsing shampoo out of her hair in the kitchen sink--not convenient, but better than taking away earned independence.
The book I recommended two weeks ago, Steps to Independence, is a great help for breaking tasks into steps and teaching them. Another great resource is the Disability Solutions newsletter. It is no longer being produced, but their archive is available on line and every issue is pure gold! Check out Volume 6, issue 1 talks about transition to adulthood and has lots of good advice.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.