Tuesdays may officially be our busiest day of the week at this juncture in our lives right now. Busy but fun. Sweaty, hot, and hard… but, yes, fun too. Last Tuesday, we dropped off Gabe at preschool at 8:30. We got home just in time to pop some bagels in the toaster and head out to the garage for Power chair training at 9. Ari has made true improvements with her driving skills. We no longer have the joystick anymore, because we never did really get very far with that. She had some issues with understanding directionality, but she also had her gross/fine motor issues working against here there, because her left arm always tends to want to “pull” left. So, even when she wasn’t intending to, she would veer that way. We use buttons or “switches” instead of the joystick now. Three, separately colored, big buttons, Velcroed to her tray. As you might guess, one moves her forward, one left, and the other right. If she presses forward and a direction at the same time, she can move on a diagonal. I had my reservations about switching her to the buttons, but she (and Gail, our trainer) both proved me wrong. And I am happy to be proved wrong when it comes to this!
Especially recently, Ari has been adjusting her direction in order to head to where she wants to go. She is also getting a lot better at approximating her proximity to her target and inching towards it gradually as she nears it, rather than plowing full speed ahead and crushing our toes the way she used to. All of these skills are prerequisite to her passing her drivers test and getting a chair of her own. As it stands, we have done 11 training sessions. We have only one left! We are really trying to get qualified to get her 12 more hours of training through DDD (Division of Developmental Disabilities), which would be what hopefully cements these skills for her, but it’s still very tentative right now.
We have little exercises and games that we play with her to encourage and facilitate the development of her skills. For instance, we let her “go shopping,” which is where she gets to carry around a shopping bag and fill it up with dress up clothes when she reaches us. Ari loves clothes and container play (filling & emptying items from containers or bags), so getting two in one is playdom at its finest for her. I also bribe her with bites of fruit and of blueberry bagels with honey nut cream cheese. We read to her out of books and let her turn the pages. We have her catch me so she can give me a tickle or get a ball off a cone in order to throw it and watch me make a silly production out of retrieving it. On really hot days, she might aim to reach my spray bottle filled with cold water, so she can get sprayed, or better yet… spray me. We let her run into towers of stacked, empty boxes so she’ll learn what happens when she bumps into something. Jake lets her take him on walks and decide where they head. All this to make it a fun and motivating and, above all, an educational experience for her when she gets into the chair for up to an hour at a time when it’s 115 degrees out. It isn’t easy – for us or for her. But, it’s important, and we try our best.
Of course, little Bellarina, Bella of the Ball, insists on dressing up in Ari’s “shopping” loot each and every time we do power chair training. She doesn’t mind the extra layers of floor-length polyester, um… I mean, taffeta, and the crushed velvet slippers on her feet when her hair is already at the point of completely sticking to her face from sweating so much. Ah no, that’s just the price of beauty.
Ari loves drinking from an open cup right now. She can sometimes do it, but she usually makes a crazy mess that I have to clean up every time she attempts. I let her try anyway… not because I’m wonderful and idealistic and think she should be taking all her liquids independently from an open cup right now. Just to avoid a huge melt down every time her brother and sister demand an open cup. She loves cups so much, in fact, that I get to use them as positive reinforcers in her power chair. Even when they’re empty!
We ask Ari to point where she wants to go, before pushing a button. This helps her locate the appropriate button to push in order to get there.
Almost there! Man, independent mobility is exciting!
Miss Gail, our creative, persistent, and resourceful trainer loves my little girls!
Right on the heels of power mobility training is OT. We were (and still are) so sad to have lost our wonderful OT, Miss Becky Huppert, to preschool scheduling conflicts. But we got so lucky that we were able to find such a great OT to take her place. Our new OT is also a Miss Becky, and she is fun and cheerful and warm and, of course, Ari loves her already. OT is no longer home-based for us like it has been Ari’s whole life up till now. We go to a facility called Lauren’s Institute for Education (LIFE), and it is a wonderful place full of fun and exciting obstacle;, new challenges for Ari that are way above and beyond what she’s gotten bored with at home. She’s old enough and mature enough now that she can appreciate these types of experiences outside the home. And I’m happy to do it for her, even if it is an inconvenience at times. Bella and Gabe don’t hate it either. :)
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