After I got the other kids off to school, Rose and I would go into the playroom with Alex. We’d have pretzels, fruit snacks, crackers, fruit, water, juice, bread and peanut butter and jelly for making sandwiches for lunch. Toys, books, puzzles, blocks, and food were up high on shelves so that he’d have to look at us, make a sound, and either point or make some gesture to get us to help him get what he wanted. We wanted him to have to communicate with us. If he made any sounds at all, we’d repeat it back to him, and turn it into a word to model to him that sounds formed words and words could get you things you wanted!
For example, if he looked toward the pretzels and said, “pre-duh”, we’d excitedly repeat that and then say “pret-zel”, slowly and distinctly pronouncing the word, while using exaggerated gestures and over-the-top excitement in our body language and facial expressions. We wanted to make communication fun, rewarding, and meaningful to him, so that he’d want to repeat the interaction and hopefully have a desire to continue using words.
If he just sat on the floor and stared, we’d sit next to him, staring. If he ran in circles or spun himself dizzy, we did it too. We had a full-length mirror and he spent a lot of time looking at himself and making funny faces. It was not an interactive, engaging silliness; it was only between him and his reflection. Much of the time it seemed he was not even aware of our presence. Sometimes he would do this thing where he shuffled his feet back and forth which we believed he was doing in an imitation of the character Goofy in a Disney cartoon. Out of the playroom, he loved to watch Disney cartoons on VHS tapes which he would stop and rewind so he could watch certain parts over and over and over again. Particularly, he loved scenes of the characters running, jumping, dancing, or doing other physical activities.
One of my greatest fears in there was when he would go to the door and try to open it to leave. Then I would feel really bad and think “Oh, he hates it in here” and I would have to try to get him interested in something. fortunately, most of the time he seemed quite content to stay in there and play.
When the older kids were at school and my husband was at work, Rose would have to be in the playroom with me and Alex. She’d play by herself or sometimes run around with her brother. He’d nudge her back and say “Run Rose, run.” Of course it didn’t actually sound like “Run Rose, run”, but we all understood what he was saying. Then he would run behind her, giggling. They’d go around and around, sometimes him chasing her, sometimes the other way around. Later in Vermont, they played the same game in the playroom and even down our long hallway. It was one of the few games that he ever initiated on his own. That, and asking me to tickle him.
We had a couple of volunteers who came to work in the room with Alex. We had a college student and two moms. All were wonderful. I wasn’t much good at doing the feedback, I felt. I was always horribly uncomfortable doing it. I didn’t want to seem like I was criticizing or saying they weren’t doing it “right”. I was supposed to “dialog” with them in order to find out why they were or were not comfortable copying Alex or responding to his requests (verbal and non-verbal) for food, toys, games, and engaging him in various activities. The Option dialoging process was supposed to explore how they felt–did they feel scared or timid or shy or uncertain or confused or what? An older woman who learned about our program wanted to volunteer. After observing, she decided she wouldn’t physically be up to all the jumping around, getting up and down from the floor, etc. So she came to tend Rose while I was in the room with Alex. One mom brought her three-year-old son with her. He played with Rose and they became great playmates.
Since he couldn’t tell us, ultimately I don’t know how doing this program affected Alex. I’d like to think it helped him learn how to interact with other humans. His increase in eye contact was a direct result, I believe. He developed some play skills that he’d had, then lost, then regained. I felt like I was doing something special for him. I didn’t want this to be one of those things that in twenty years I’d be thinking, “Gee, I really wish I had tried doing that Option home program when he was 6.” All in all, I think it was a positive thing. I’ve kept in touch with two of the original volunteers for over twenty years now, so it must have meant something special to them, too.
We had a pile of blankets and pillows (there was a huge mat covering the entire floor) and sometimes he’d burrow under everything. Once in awhile he’d fall asleep. There were times he’d just be quiet and I’d just sit patiently and give him a little rest time before trying to engage him in more active play or another activity. At these times, I would marvel at what a beautiful little child he was. Although the sadness of “what might have been” never leaves me, at some point I did accept that I didn’t need him to change for me to be happy. I always hoped he’d someday be able to talk to me but that hasn’t happened.
I remember one very special experience I had in the playroom with Alex. Since age 3, he had been obsessed with letters and began spelling words with magnetic letters on a cookie sheet. Consequently, in the playroom we played a lot with letter blocks and letter tiles and magnetic letters and writing letters on paper. He’d dictate, letter by letter, and I would write long, long lists of the names of Disney animators, artists, directors, background, and music people from the movie credits. When he got older, he would write and then typed the names himself, but he seemed to enjoy watching me write. One day I was writing letters and for some reason I was also writing numbers. My thought process began: if there are upper- and lower-case letters, why not upper- and lower-case numerals? I started imagining what a lower case “2” or “5” might look like and I suddenly got very excited about trying to design these and in my mind played around with many different ideas. For a few moments, everything else just seemed to fade away until all that seemed important was me, and the thoughts in my brain. It was a strange sensation. With a shock I suddenly wondered, is this how Alex feels?–all the time?! Maybe the world inside himself, inside his mind, is so engrossing and so fascinating that it makes it hard for him to attend to our world. I guess I’ll never know.