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.

Going to Neptune

0607161654bBack in the olden days–circa 1991–educators did not yet believe in inclusion for autistic children. Not the ones in NJ, anyway. When Alex was diagnosed at age 3, we were strongly encouraged to put him into a preschool program. We were okay with that decision; there was a public preschool program (half-day, mornings) for developmentally delayed, special needs children at the elementary school around the corner, one block from our home. Our three older children were enrolled there.

I was a stay-at-home mom and our other children were home with me until they went to kindergarten, so this was hard for me to let him go so soon. I was worried about so many things, especially because this was Alex.

The summer before he started, I worked very hard to get him potty-trained. We were successful with the urinating part, at least. I did NOT want to send him to “school” wearing diapers! I felt like that would have reflected badly on me as a mom. Shows you how young and naive I was. Luckily, he made it through the morning hours with no BM’s.

However, every afternoon/evening he would have these sloppy, diarrhea-like BM’s. It ran down his legs into his socks and shoes, requiring taking off everything and putting him in the bathtub to get him clean, and then putting fresh clothes on him. Knowing what I know now, I realize he must have had a lactose intolerance or some other food allergy to cause this. Anyway, he was not completely bowel trained until he was 6 years old. As we used cloth diapers back in the stone age (Pampers and Luvs existed, we just couldn’t afford them), when he grew too big and I could no longer make two diapers fit him, we began diapering him with receiving blankets at bedtime. Ahh, memories. That also makes me recall that we used to diaper pin his shirt to his pants, one in the front and one in the back, to keep him from taking everything off and running around au naturelle.

He did well at pre-school, keeping his clothes on and peeing in the potty there, except for constantly attempting to climb up whatever was the highest piece of furniture in the room. It drove his teachers crazy. Although it was difficult at first, he got used to me leaving him. He played with toys, just not with any of the other children. With lots of prompting, he participated in circle time, and whatever activities were going on. They taught him a few signs: food, more, help, later, please. Probably the best thing was that it was a few hours of respite for me, allowing me a much needed break from the constant monitoring of where he was and what he was doing every minute that he was awake.

He attended pre-school at the elementary school for two years. At the end of that time, we were directed to take him to a neurologist (again) for a diagnosis (again), for purposes of determining what special education services he would receive when he turned five. The experience with this doctor was different from the original neurologist we’d seen. Whereas the first one barely looked at Alex and seemed to base his determination of “PDD-NOS” (pervasive developmental disorder–not otherwise specified) almost solely on my answers to his limited questions, this second doctor actually spent an hour observing how Alex behaved in a room with toys, games, books, and puzzles. She ultimately labeled Alex as having “classic autism”.

So with that, we went to the IEP meeting, and guess what? They could not handle a child with “classic autism” at our local elementary school. We were informed that the school district would pay for him to attend a special school in Neptune, NJ–over an hour’s drive from our home! I was flabbergasted. They actually wanted me to send my five-year-old child who would not even be able to tell me about his day, to ride a bus an hour each way, to Neptune?!

It took some getting used to the idea. Was this really the best thing for him? I supposed it was a good school; it was staffed with “special education” teachers, after all. Maybe it really would help him–get him to talk, to tie his shoes, to play with other kids, write his name, learn how to do all the things that little kids do that he wasn’t doing. I felt confused and distressed. Seeing no other viable alternative at the time, my husband and I decided to send him to Neptune.

The first two months we weren’t seeing astounding progress or anything, but he seemed to be okay with getting on the bus each morning, so I figured that must mean something. Plus, I’d get little notes from the teachers telling me what was going on. Things were going alright until the day the school nurse called. She told me Alex was sick and that I needed to come pick him up right away. Oh, great. We had one car, which my husband had taken to work. For some reason, he couldn’t leave work and come home to let me use the car. I phoned several friends before I found one who was available and willing to drive me (and my youngest, Rose) the 100-mile round trip to get Alex. I felt like crying all the way there. I was upset about inconveniencing my friend this way, thinking about Alex being sick, and so far away, and worrying about both of us getting back home in time for our children to return from school. It was a horrible experience.

That was the day I started to consider seriously doing a home program for him. Alex had started at the Neptune school in September. In January we pulled him out of school and I began his intensive one-on-one Option home program. He had his sixth birthday that month.

I liked having him at home with me. It never seemed right to have such a young, vulnerable child have to go so far away from home to find the “least restrictive environment” (one of the terms the school people liked to throw around). Having him home was the least restrictive environment, in my opinion.