Last Friday Ellie and I went for one of her regular visits to the communication enhancement clinic. We have been going for a while and though we have tried everything we were advised to we have had minimal success. The reasons are many and varied. And the expert there had very little success in engaging Ellie. Her sensory integration issues, especially auditory defensiveness, made the use of “his” toys very difficult. Ellie was having none of it as her Irish Auntie Rie would say.
But still we kept going and trying every six months when we could get the appointment. I took pictures of all her toys, printed them out, cut around them, put Velcro on the back, organized them in a three ring binder which proved very cumbersome to use with Ellie on my lap and it was too hard for her to turn the pages herself. She did love the book and taking the pics off the pages and crumpling them in her hands. This was great fine motor work but not so good on the expressive communication front. She does request that book. She is looking for a way to tell us what she needs.
Then we tried the picture symbols that were mainly black and white. We had less success with them. She was less interested in them and they are kind of limiting in that they don’t allow for many shades of gray present in human wants, likes, dislikes and needs. So after creating hundreds of them and laminating them and putting them into a smaller notebook via Velcro, etc, etc that just did not work either.
This is why we resorted to spelling stuff on the Doodle pro. I also use my hands to help her make choices as described here. I also know what an “ah” means compared to an “uh”. But that does not help her with other people.
The visit to the communication enhancement clinic before this last one our expert was having minimal success and getting a little frustrated. I am sure he thought I was totally deluded when I told him all the stuff Ellie could do. In desperation after all his attempts I pulled out her plexiglass letter board we have used for spelling. Tiffany made this for Ellie and it is the precursor to a light board where the person only has to look at the letter to input it in to a computer that will talk for them. Ellie is really good at this. So I showed them how she would visually find the letters I would say to her favorite words. Our expert, who I gotta say is great, tenacious and loves the kids he helps, was impressed. It was the beginning of the breakthrough.
Last Friday we woke up late and I almost did not go to the appointment. I had been a long week after a hospitalization and stressing out about the floors not being done in the wake of our visitors. But I am so glad I took her.
When we arrived in his office there were letters everywhere. Ellie was immediately engaged. He had made two, one large and one small, *Nyloop boards with laminated letters all over them. Ellie was reaching for them. And this time he did not use “his” toys but Ellie’s. He even quickly printed pics off this post and used them with red and yellow backgrounds which Ellie was immediately into – way more than the white background ones. He figured out how I could make a book that Ellie could use and I could use with her. I will take a pic when I have completed it. It was all very exciting. Ellie was reaching when he asked her to make a choice and was delighted when he took her hand, gently and hand under hand to help her pick yes! He made a big deal of her picking YES.
If I hadn’t been holding I would have loved to take a picture of Ellie’s face when she would pick YES and he would go nuts. She was so proud of herself! This was the first time he had seen her in full on, happy, enthusiastic want to learn, learn and learn some more Ellie mode. He had only seen her in scrunch, get that foreign object (you gotta be kidding me if you think I will play with that) as far away from me as possible mode. I think the delight went both ways. Ellie is like the brightest ray of sun when she laughs and smiles.
He then astounded me by mentioning that he had been given a small grant from a mother of a woman who had died of cancer. Before her death, this young woman, Mary Kay had become a disability activist. In her own declining state of health she began to understand and fight against the incredible issue of lack of access for the disabled. I find this so inspiring that she started fighting for others in her last days on earth.
Mary Kay’s mom after her death then purchased some assistive technology that was to be given to someone who would be really helped by it. One of these things was Mayer-Johnson's Boardmaker @ Home. Which is not cheap. Our expert gave it to us. It is going to accelerate our ability to make her communication book with the right colors for the background. It will allow us to create a library of pictures and easily put them in different formats. It has a built in library of picture symbols as well.
It just goes to show, if you stick with something long enough, the answers will come. I will post her new book as soon as I make it by next week.
*Incidentally adhesive backed loose Nyloop fabric is difficult to find but so useful if you have a kid with cp. I got a big roll of navy, adhesive backed Nyloop from Bellows Products, LLC. You can find them here or call them toll free at 866-389-5616. They are in Providence RI and will ship. Very reasonably priced as well.