It’s fair to say you taught me. There are some things I’ve learned A gift that is freely given often cannot be earned.
I’ve seen you take the world on
With nothing but a grin
And whenever that was not enough
You’d take it on again.
I watched you face the dragon
That filled me full of fear
I saw you climb onto its back
And whisper in his ear.
I saw the dragon look at you
Much as I have done
It seemed to me he smiled a bit
Before he ambled on.
I don’t know what he heard from you
Or what it meant to him
But there’s never been a dragon
I have feared since then
Ashley before the Rett Syndrome regression
As I indicated in Post 8 – Ashley and Henry, at 18 months my daughter, Ashley, lost use of her hands, her face became pale, and she quit vocalizing. She sat on the floor rocking in her own world and would not make eye contact. She had one screaming episode where she grabbed her head. Rett Syndrome is a developmental disorder that causes loss of much physical function. There is no telling what Ashley felt during the regression period.
Rett Syndrome was not known in America at the time of Ashley’s regression. Judy and I took Ashley to a specialist who did not know what was wrong, but he said she would never talk and would require total care for the rest of her life. He suggested we institutionalize her, this child we cherished, and to get on with our lives.
It is hard for me to describe how I felt after hearing the doctor’s words. Perhaps “shock” is the best term, but coupled with sadness and fear of a long-term problem beyond anything I had imagined. It was like I was in a world of confusion that had changed in color and form that seemed to pervade the infinite.
When we later read this doctor’s report, we saw that he did not believe what we told him. He wrote that she never had use of her hands and never “vocalized”. Rett Syndrome was not known in America at this time, so I do not blame the doctor, but it showed he did not have the answer. Who did?
Judy and I thought we had a narrow window of time to help Ashley regain her function. We spent many a night studying everything from Edgar Cayce readings on health to academic journals devoted to child development. This focus on Ashley had a price. At this time our oldest daughter, Kristin, was around 13 years old, and while she was not totally ignored, she was not getting the attention she needed.
Because Ashley sat on the floor rocking, ignoring her environment, Judy suspected autism. She found some criteria for autism, for which Ashley satisfied more than half. It was the best diagnosis we could come up with. This led to us meeting the Kaufmans, by way of a movie.
In 1979-1980 I was head of the U.S. economics division of a large bank in San Francisco. We lived in Walnut Creek, where Ashley was born in February 1980. Ironically, when Judy was pregnant, she watched a television movie about a couple who cured their autistic child. Neither of us could have known how important this movie would be in our lives.
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Our daughter, Kristin, with Ashley before the Kaufman program
Ashley before the Kaufman program
Judy with Ashley before the Kaufman program
The movie was Son-Rise and told how Barry and Susie Kaufman, also known as Bears and Samahria, cured their autistic son, Raun. They engaged in an intensive but fun and happy program designed to keep Raun engaged and to make eye contact, keeping him from retreating into his own world, and they kept him on a healthy diet. At the time this was a radically different approach to treating autism.
Barry and Susie Kaufman and their mostly adopted children, early 1980’s, Raun is third from last
Bears, who long ago quit his work in advertising in New York, is the author of 11 books and one more with Samahria. The couple adopted some abused children and gave them a great life. They co-founded the Option Institute in Massachusetts, where they help empower people using the Option Process and, also, head up an autism treatment center.
When we first met the Kaufmans in the early 1980s they were still in New York, prior to their establishment of the Option Institute. Judy, Ashley, my mother, and I went to Long Island, New York to meet with them, after reading their books (4 at the time), as they required, to make sure we understood the nature of their program. When we arrived on Long Island, we were anxious for the Kaufmans to assess Ashley. Big surprise – they spent the first entire day with us, not even wanting to see Ashley.
Some days one never forgets, and that is one of those days. Bears spent the entire day walking and talking with Judy. Susie and I headed in a different direction, and she did the same with me.
After reading their books, Judy and I should not have been surprised that we were their focus. From Happiness Is A Choice, “Unhappiness follows from certain beliefs and judgements, which we choose and which we can change.” (p. 60) In A Miracle to Believe In, Bears wrote, “…the single most important part of the program is our own personal comfort and attitude…not simply what we do, but how we do it.” (p.124)
In our walks that first day we were each questioned extensively to get at the root of whatever beliefs might stand in the way of us always having a genuinely happy and positive attitude. Simply put, their questions were usually:
What are you unhappy about?
Why are you unhappy about that?
Why do you believe that, or do you believe that?
What are you afraid would happen if you weren’t unhappy about that?
(from To Love Is To Be Happy With, p.39)
All day they questioned us about how we felt about Ashley’s situation, with another question usually following each answer we gave. Here is a sense of the day’s questioning.
Q: How do you feel about Ashley’s situation?
A: I don’t like it. I am sometimes unhappy and angry about it. Not around Ashley, but I have those moments.
Q: What about Ashley’s situation makes you unhappy?
A: For example, I don’t like that she cannot talk.
Q: I understand you want her to talk, but what about her not talking makes you unhappy?
A: I don’t want her to have this condition; I think it is normal to be angry and unhappy about it.
Q: Why do you believe that is normal?
On and on and on the questioning went, all day long, until Susie asked me, “What do you think would happen if you were not unhappy about Ashley’s condition?”
I realized then and there that even if Ashley’s condition would not change, I would be happy. From that day’s discussion, it became clear that I could better help Ashley if I was happy rather than unhappy. I learned in a profound way that we choose happiness, and this is the Kaufman’s gift. I am grateful for the Kaufman’s insight into the power of the Option Process.
Back in Houston the Kaufman’s “program” involved multiple three- hour shifts each day to engage with Ashley. There was no way Judy and I could do this alone, so we interviewed and hired people of all ages to help. The criterion – they had to be happy and loving. We wanted Ashley to focus on us and constantly engage with her environment.
Ashley’s “work” room was located on the second floor of our house on Mooremeadow Dr. on the west side of Houston. Ashley sat on one side of a small table, and Judy or I or one of our helpers sat across from her. At that time Ashley was motivated by grapes. We would hold a grape right in front of our eyes to induce her to make and keep eye contact. A two-way mirror in the door allowed us to observe. We and our helpers spent many an hour over a three-year period in that room.
We met with helpers once a week in the evening, and everyone shared what they were observing. All helpers treated Ashley with unconditional love and acceptance, and a willingness to join Ashley where she was, meaning to relate to her in a way that she could understand. Many toys, flash cards and books were introduced once we had eye contact.
We wanted Ashley to have a “will to live” or motivation, that power within that enables us to overcome severe challenges. We could not give her that, but maybe we could help her find it. We loved her with joy for wherever she was in her struggle and tried to go with her on the next step forward. We worked on her hand use, and after many months, with great difficulty, she was able to pick up a grape from the table using her whole hand. She lost this ability once she went to public school.
Rett Syndrome proved more physically severe than autism, and she still cannot talk or use her hands. However, she is very aware and conveys some of her wants in a non-verbal way.
Ashley with Kristin after months in the Kaufman Program
Ashley is now 43, and she smiles almost all the time. There is a light of love and joy in her eyes, and that is her gift to us. She feels loved, accepted, and her high self-esteem is secure. She is like the light of God in our home.
Here is my message to young parents. It is important that you love your spouse and work out any difficulties. One of the best things you can do for your child is stay together. Love each other and love your child.
A special needs child will challenge you to be your best, to become loving and accepting, but that is true for all children. From a state of happiness, you can better help your child. Do not show unhappiness, for your child will think he or she is making you unhappy. In order to provide a happy environment, you genuinely must be a happy person.
The following pictures were taken in 2023 of 43-year-old Ashley.
By love serve one another. Galatians 5:13God is love. 1 John 4:16
You can hear more about our journey with Ashley and our visit with the Kaufmans in an interview I gave with Heidi Dixon of Allumine Health. (After the first minute the video clears up.) Toward the end you will see Ashley, and I sing her a song that Doug Sharp and I wrote for her in 1979 and one I sang to her every night for many years. I now say the Lord’s Prayer before she goes to sleep.
Here are some quotes from their web site about the importance of beliefs to our wellbeing.
“For instance, two parents watching their daughter getting married can have different experiences – one is happy and the other is distressed. How do we explain 2 people witnessing the same event (the same stimulus) having diametrically opposed responses? Simple – each one holds different beliefs that filter their experience of the wedding. One sees it as wonderful – believing that their daughter will be happy and the family will grow. The other sees it as terrible – believing they are losing their daughter and that they will be lonely without her. This simple illustration is a microcosm of the myriad ways our beliefs determine every response, from joy to anger, from kissing to shouting.
“The good news is: our beliefs are changeable. Our experience with thousands of people from across the globe has shown us that, when people use the tools that we provide, known collectively as The Option Process, they are able to uncover the beliefs fueling their responses and the underlying reasons for their beliefs. Moreover, they are able to change the beliefs that may be generating unhappiness, dysfunctional relationships or ineffective behaviors.
May God bless us all as we journey through life’s challenges.
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