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.

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Finding a “Cure” for Autism

I think the only autism “cure” we haven’t tried with Alex is swimming with the dolphins. We, of course, would’ve tried it if we lived anywhere near Florida and hadn’t seen that recent news broadcast about the toddler who was attacked by an alligator. As it is, we’ve given every doctor-approved method, activity, medicine, and diet that we’ve researched a chance. The outcome always being the same: Alex stays the same.

The first big treatment we tried was acupuncture. There was a little boy in Alex’s preschool class whose parents were trying it and he was actually starting to talk! So we found a practioner and began going there once a week. Of course, this meant leaving the other children home alone.

By this time our eldest daughter, Kathleen, was an unusually mature 13-year-old. All of our other children became mature very early–Kathleen, Alan, Jimmy, and even Rose, despite her being two years Alex’s junior. That will happen when you have a sibling with a disability. She bypassed Alex developmentally when she was three and he was five. I have to say that that is still one of the most upsetting events I’ve witnessed as a mother.

I digress. Early every Saturday morning, my husband Paul, and I would head out with Alex, leaving the other children home alone with boxes of colorful, sugared cereals and hours of Saturday morning cartoons. It was a 30-40 minute drive each way. In central New Jersey twenty-five years ago acupuncturists were not found on every corner. We actually enjoyed it though. It gave us an excuse to go on date, kind of. Alex sat in the back, and since he had virtually no language and barely paid us any heed, unless he wanted a snack, it was as though my husband and I were alone in the car.

At the first appointment, the acupuncturist looked at Alex’s fingernails and pronounced that there was a blockage of a particular meridian. His chi wasn’t flowing correctly, I guess. She thought the treatments might help him, so we decided to go for it. On subsequent visits, upon arrival we’d be ushered into a small room where the doctor would gently insert a very fine needle in the center of his forehead, right at the hairline. He never flinched. Then we went back to the waiting area where Alex could play with puzzles, blocks, and books. After 45 minutes or so, we went back into the little room where the doctor removed the needle. Sometimes, not every time, a single drop of blood would form at the site.

We kept at these “dates” for approximately six months. I felt that if we hadn’t seen something in that time, nothing was going to happen. I hoped fervently for something, anything: any change or improvement, no matter how small. We never noticed any difference, so we stopped going. And I missed my Saturday morning dates with Paul.

A few years later we had a similar experience when we began taking Alex to a kinesiologist. It was basically the same scenario: Saturday mornings, long drives, the other children home alone. The kinesiology doctor was also a chiropractor, and he made some spinal adjustments (something like that). He talked to us about diet and other things. He instructed us on one thing that was new to us and probably one of the only things that actually produced results: “patterning.”

Every night, and in the mornings if we could fit it in, we would have Alex lie down on his back on a mat on the floor and do the “patterning.” I would hold his wrists and my husband would hold his ankles and we would alternately raise and lower his arms and legs in a pattern to simulate swinging your arms when walking–left arm and right leg, right arm and left leg–something Alex didn’t do up until that time.His arms usually just hung straight down at his sides. Alex didn’t seem to mind the exercise at all. We did these sessions for some months and finally he began swinging his arms in a normal way when he walked. It would have been interesting to see if Alex made any other progress with this doctor, but we’ll never know because we ended up moving to Vermont for personal and financial reasons.

Shortly after our move, we saw an ad for a woman who was running a therapeutic horseback riding program for autistic and other developmentally delayed children. As I have always loved horses, this was a no-brainer for me! We immediately signed up. I walked beside the horse along with the person leading the animal and two helpers as Alex rode. He seemed to enjoy this; he often smiled and sometimes laughed a little. The riding was meant somehow to regulate his body movements and make him more aware of his body. Not sure any of that happened. We did it for two summers. In Vermont, summers are pretty short, though. Again, it provided time for Paul and I to get away together, practically alone, for a couple of hours.

In 2005 when we learned of the  “DAN! protocol” (“Defeat Autism Now”), we began searching for a doctor who could help us. The “DAN! protocol” was centered around the ideas that autism is caused by a combination of lowered immune responses, external toxins such as vaccines and heavy metals, and problems caused by food allergies. The doctor went through a number of tests (blood, urine, stool, hair) and then according to those results, suggested a regimen of various supplements, vitamins and cutting various foods from his diet: sugar, grains, gluten, dairy, and so on. We found a “DAN!” doctor only an hour and 45 minutes away! (Hooray–another round of autism-sanctioned dates!) The appointments we set up were on weekdays, when the other children were in school. I was really excited about this one; I thought we were going to finally see some results and maybe even cure the autism! Although we kept up with all the testing and the supplements and dietary changes for about a year, eventually the doctor told us–actually he had the receptionist tell us over the phone–not to come back because there was nothing else he could do for Alex. Up until this point, we had been the ones deciding when to call it quits. This time, it was a medical doctor telling us that, basically, our son was too autistic.

(Note: After writing this, I wanted to see if there were any updates on Defeat Autism Now and discovered that it was closed down in 2011. If interested, here is the article about it: http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html )

We’ve tried auditory integration therapy (AIT), sensory integration techniques, Reiki, craniosacral therapy, massage and craniosacral together, chelation, immunoglobin injections, secretin, drumming, physical and occupational therapies–all with either no results or very limited benefits. We cut out all sugar from Alex’s diet for 6 months with no result. Another time we went gluten free–difficult and costly to do–again, with no change in either his health or his behavior. All that did was starve the poor boy.

Each time we got our hopes up only to be let down. After awhile it became easier not to hope too much. Still, we continued to search, always on the alert for discoveries of new treatments and therapies. Friends and relatives were always asking, “Did you see that segment about autism on 60 Minutes last night?” and sending me articles on autism and various treatments. For the most part, Alex truly hasn’t changed much since he was 4 years old and at this point, I’m thinking he never will. I accept that this is the way he is and that he will most likely stay this way. But, hey, with new advances in science and technology continually, maybe someone will invent an electronic device of some kind that flashes lights or emits frequencies that will be able to change his brainwaves and make him not autistic anymore. Who knows? We haven’t given up hope for a cure, but right now our priority is helping him be happy and comfortable just the way he is.