I've loved words all of my life. My earliest memories are of pretending to read and write. Shortly before my child's dx, I began to modestly publish. It was exciting to have anyone take an interest in my words. It's my natural mode of expression though I admit the mechanics of our language still elude me (so forgive typos, misspellings and ill grammar). Anyway, after the dx, I was told my son might never be able to verbally express himself or read and write. He was 'heavily involved' in the disorder.
He wouldn't understand words?
My heart broke. In a vain attempt to heal it, I stopped writing and began researching.
Heavily motivated, I ran across a website for Down Syndrome that explained how to make videos pairing words with pictures. It emphasized using the mother's voice rather than just a random voice to reinforce learning. I made several and he enjoyed them. Once in awhile he would vocalize but nothing stuck. We committed ourselves to ABA (applied behavioral analysis) AVB (applied verbal behavior) along with Sensory Integration and other forms of therapy (topics of "Tenfold" blogs to come later). I felt like we ran a tight ship but he continued to be considered a difficult learner...which I will always translate as me being an incompetent teacher.
I was following the rules. Doing things like I was told to do. I was understanding the concepts. Keeping data. I became versed enough to train the student therapists that would come in and out of our home. Wonderful nonverbal gains were made but when it came to communication, reading or writing -- nothing. In all of the external structure and guidance, I neglected the obvious. He had developed his own natural mode of expression: Sculpting. It began during an early ABA session when he was 3 years old. We introduced him to play-doh by showing him how to roll it out and make stars with cookie cutters. To even touch it, we had to externally motivate him with a Gummi Bear. He caught on about 5 bears later. The next morning, we came into his room and, to our amazement, he had created Pooh climbing up the honey tree. I will forever love Pooh Bear and truly believe Gummi Bears prove the existence of God.
Anyway, he would go on to create masterpieces. I could see his focused thoughts but he would destroy the work if anyone came in close proximity. Allowing interaction with him and the clay became another task on the unending list of ABA "things to do" which was becoming overwhelming. We stopped our homeschooling and moved him to a school that specialized in ABA/AVB. It was a good school. They continued to make nonverbal gains but again we had not found the teaching method needed to get over the communication barrier. "He's just so severe," I was told. It was at this school that I met a mom who told me of a tenacious woman named Soma. Soma briefly came to the school to work with my child who was then around 7 years old. She assumed something so many others refused to because the data did not indicate it. She assumed intelligence. And she assumed it in every child. Her rationale was completely out of the box. The previous several years, I had been instructed, if the data didn't not show growth then growth might not be possible. Soma didn't care much for data. In each child, she could see beyond the idiosyncratic behavior. She could see beyond the frustration driven by failure which may well create the idiosyncratic behavior. I think she could see the soul of the child.
Though I have not mastered her techniques, there was a beautiful connection that happened one day while trying. My child began thinking of a video I had made him so long ago and sculpted all the animals, one right after another, in a line. When he was finished, he took my hand and made me pointed at the first one. I said, cat. He had me point at the next animal and thinking of so many things Soma had said, I said, your turn. It was the longest ten minutes but he finally said, cow. Inside, I was seriously praising the Gummi Bear gods but on the outside I remained cool as not to distract him. He had me pointed to the next and I said, dog. And he pointed to the next and I said, your turn. He said, goat. This began a "my turn, your turn" game that would go from objects to all things including words in a book...yes, reading! I taught him to read his day in context aloud. If he was eating cereal: This cereal tastes good. Can I have some more? Or when the girls are too crazy: Sisters, be quiet! (That's a personal favorite of mine.) Once he reads it, I help him commit it to memory. An aside: Never take your motor cortex for granted...movement is intelligence outwardly expressed and if that's #$&!@ up...well, just be grateful if yours is intact....but I ramble.
Anyway, I call it contextual reading. I'm sure someone else has another name for it. I'm sure I'm not the first to discover it. I'm not out to take credit for it. I just know the more we do it, the more it sticks. Spontaneous language still remains difficult for him but reading --whoop --that's right, written words have him speaking his wants and needs. Soma's work goes much deeper into self expression through academics and I am getting better. We are far away from her now and I miss her knowledge and her friendship. Because of her friendship, I lost a few 'friends' in the ABA/AVB world who where more data driven, more 'proof' oriented. Who feel, maybe, that they had failed us? Love to you where ever you are now. I still use everything I've learned. Synthesized. I still jot an analysis down here and there. But then I have a child 'heavily involved' and so it's best that I take this all lightly. And look! I'm writing again.