It’s been a couple months since a real Abbie update – I apologize for that. There is lots to share, as it has been an exciting summer so far.
Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for – better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!
Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called “2-step scanning”. ”Two steps” means two switches for her – one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.
We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her “mover” switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her “selector” switch (hand) to make play the animation represented by the picture.
Two weeks….twenty minutes. Same thing in Abbie’s world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully – which yes, did elicit looks of “Does Mom need a nap or an asylum?” I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color….to have fun!
This is a BIG step!
After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.
Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.
The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking…in her own way. Often when someone says “hello”, she will quickly vocalize in response. I reinforce this by telling her that it’s good manners to answer when someone says “hello”, and commend her for being a polite young lady.
The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.
On Wednesday the school vision specialist came to see us. We’ve never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say “yes” and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a “CCTV” which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.
We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!
I hope that each of you is getting some extra time with your family this summer!