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.