It’s taken me a few days to catch my breath enough to write this update. I don’t know what it says about me, or where we’re at in this journey, that I question therapists expecting to have my balloon popped. I always have a twinge of fear that my expectations of Abbie may be oversized, and my observations of her abilities are skewed by love and hope.
Last Wednesday we were able to visit her Augmentative Communication speech therapist for the first time in a very long while. Lisa is the one who helps us with Abbie’s switches — she’s the one who has given Abbie a voice.
I brought her up to speed on what Abbie is able to do now — most importantly, “two-step scanning”, using two switches to make choices. In my mind, this brought her very close to being ready for a dynamic communication device — a computer whose display moves from one screen to the next when she makes choices. Not only did the balloon not go “pop”, but it became hyper-inflated!
Lisa told me that another family we know, whose daughter uses a dynamic device, flew up to San Diego a while back to have a wheelchair seat custom-molded for their daughter. The chair is now ready, so instead of flying the whole family back to California, they are flying the wheelchair guy to Hawaii. He would like to train the staff while he is here, so is looking for a couple of other kids to work with.
Oooo-oooh — pick me, pick me!!
It looks like we will be able to see him, but get this — the chair he has put together for Shari is a power chair, and she will be able to use the same device to control her chair and her communication device! Oh. My. Goodness. This thought had never occurred to me. I had concerns about how she would be able to move from one joystick for driving to another for communicating, but my mind had never wandered to such an elegant solution.
So, the possibility is there, and her speech therapist thinks that from a control-device access point of view, Abbie is ready (for the communication device AND the chair)…but what would her other therapists say?
The next day we went to OT, and as Providence would have it, Eydie had planned to let Abbie practice in the power chair again.
We got her all set up, and she started backing up again. She hit the desk behind her, and then apparently decided that actually going somewhere might be more fun than just crashing into things. She started moving forward…toward the door. We all looked at each other, and said aloud “Should we open the door?”
Duh. Of course we opened the door.
We helped with the tight turns, and then…..there she went. Rolling down the hall, driving herself.
I saw other kids in the hallway stop what they were doing to watch Abbie roll by. My soul rejoiced as they saw HER, and as they processed that she was doing this herself, so she had to be smart.
When we made it back to the room, Eydie looked at me and said, “I am calling today to put a stop to the manual wheelchair order!” We have been waiting for this chair for 5 months now, and I have been getting a little more than aggravated at the delay. Ha ha ha — always for a reason. A wonderful, beautiful reason.
There is much to consider as we pursue this new possibility. Would you pray for wisdom for us, and for the perfect, perfect chair and communication system for us. Each chair has to last 5 years, so we must do our best to look into the future and determine what will best meet Abbie’s needs at age 14. (If she still needs a wheelchair by then.)
If we can make this power chair/communication device combo happen for her, it will truly change Abbie’s life. I can’t believe she’s here. She works so hard every day, yet we know that it is God’s grace that has lifted us to this broad place – and we rejoice with (off-key) singing!