Inside the Option Playroom

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.

Alex watching Rose’s feet as she runs.

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.


The Option Institute (2nd Part of Going to Neptune)

We took Alex out of the school in Neptune because we had determined that we would do a home program based on the Option Institute model. I remember sitting in the foyer at our church one Sunday when a woman approached me and asked if I had heard of the Option Institute. I had not. So, as this was before everyone had internet access, I either telephoned or wrote a letter to get more information. I also went to the public library and checked out a book entitled “Son Rise” by Barry Neil Kaufman, who founded the Option Institute along with his wife, Susie.

In the ’70s, the Kaufmans had two little girls and a baby boy. When their son started showing autistic-like behaviors, they began searching for answers. One professional even told them to put their child in a mental institution and forget about him. To them, this was an unacceptable choice. They decided to try something different. They began a home-based program in which they spent every waking hour interacting with their son in a special playroom. This room was designed to be a calming, low-stimulation environment, yet have everything they might need to play and interact with their son. Their desire was to draw him out by going into his world gently and on their son’s terms.  Their goal was to invite him lovingly into our world without overwhelming or bombarding him with stimuli and demands.

They changed his diet to one of whole, natural, organic foods, eliminating highly processed, refined, pre-packaged foods. Susie and her husband took turns playing with and teaching their son. They hired people to help with their other children as well as with household duties. Gradually their son ceased to be autistic. They founded the Option Institute in Sheffield, MA, to teach other families how to replicate their program.

As with many other things we’d tried, I did not want to be sitting here 25 years later, thinking, “Gee, I wish I had tried [insert miracle possibility here].”And so Paul and I decided to give it a try. The biggest issue was the price tag for a week at Option. It was around $6,000. I talked to people at the Institute for advice on how to go about fund-raising. This was probably the hardest thing I’d ever done at that point in my life. The fund-raising consultant lady at Option gave me the name and number of another mother who had fund-raised to attend the week-long program, so I called her. I was really struggling with the whole idea of not just trying to find the courage to do this home program, but also fund-raise $6,000. I am, at heart, a very quiet and shy person, and when I voiced my fears and hesitation over the fund-raising, she bluntly said, “Well, what’s stopping you?” I have to say it really hurt.

We did various things to raise the money: posting letters in the newspaper (just flat out asking for money), asking a few churches for donations, asking family members for money, going to a bazaar with craft items that friends made and donated for us to sell. And through all that, we raised the $6,000 we needed; it seemed like a miracle to me.

It was a wonderful experience. The Kaufmans and everyone at the Option Institute was very kind, supportive, energetic, and fun! We had our own little house to live in with a fantastic playroom where we and their staff took turns going in with Alex, then took turns giving and receiving feedback on how to do a better job the next session. Everyone there really fussed over us; the attention was marvelous. The food at the cafeteria was all natural and organic, with many vegetarian choices. The setting in the Berkshire mountains was beautiful and peaceful.

In addition to the instruction on how to work with Alex and how to recruit and work with the volunteers who would help us in our home program, we had something called “personal dialogues.” This involved meeting one-on-one with one of the staff who’d been specially trained to do this “dialoguing”. Essentially it was a conversation, almost like a therapy session, in which the staff member would ask us probing questions to help us uncover our beliefs. The gist was that all of our behavior comes back to beliefs that we hold, whether we are even aware of those beliefs or not. It was very enlightening.

When our week was done there, we had a tearful good-bye with the staff–we’d grown very close through all the hours of close interactions–and drove home. We were excited to begin our own home-based Option program. We had to fix up our “playroom”, and find some volunteers. We were very fortunate in finding some fantastic people; I still keep in touch with several of them, even all these years later. I had high hopes of reaching through to Alex. Would we be able to “cure” his autism? In my naivete, I believed it was possible.

We ran our home program for a year in New Jersey and another year after moving to Vermont. One of the biggest headaches in Vermont was dealing with the school district, trying to get them to help with any funding for our program. The only thing they were willing to offer us was speech and language services once a week at the elementary school.

Some months after beginning our program, we had a member of the Option Institute staff come to our home in NJ for a weekend program where he observed us and our volunteers working in our playroom (complete with two-way mirror) with Alex, and then gave us feedback. He observed me giving feedback to our volunteers and then gave me feedback on my feedback! I even returned to Option for an advanced training week after we’d moved to Vermont.

Although Alex had made some gains, he was still clearly autistic and, in my opinion, not going to be not autistic at any point. I guess I just became disenchanted with the whole idea, so I ended up enrolling him back in public school, and in the fall of 1997, at the age of 9 1/2, he began third grade. Would he be the same person he is now if we had not done the home program? I’ll never know. Do I regret doing the Option program? Not for one minute.