There is a certain perspective that one develops as a senior. Having time on one’s hands is a luxury pre-retirement. We’re driven by who we’re going to become. Most of us can’t conceive of what’s in store after 65. I suspect that even Paul MacCartney didn’t care much about whether he would be needed or fed past age 64.
I never would have predicted 30 years ago that I would be Phoebe’s dad. Phoebe turns 15 on February 16…I’m 65… I had the experience of raising 3 wonderful sons, Phoebe was my first daughter, followed just 2 years later by her sister Honor.
Phoebe is special. She had typical developmental milestones in her pre-school years and what seemed to be a very painful shyness in pre-school increasingly became apparent as being much more by the fourth grade. She could not respond to her teacher in class. Her grades plummeted. Her teacher became less and less tolerant of Phoebe’s “tuning her out” and lack of participation, lack of comprehension, particularly math. Her teacher, having to control an oversized class, and having little time or patience to actually personally supervise Phoebe, never could figure out that Phoebe had a learning disorder that was very disabling, and remained quite convinced that there was a behavioral problem and rewarded her by having her repeat 4th grade…in her i.e., the same teacher’s, class again.
Even worse, at least for, me was the fact that she could no longer speak to me, or make eye contact
Why?
Her mood became increasing grey. She was angry, morose and spent her time alone. There had been several episodes in the past where we had been called to school because Phoebe had a number of times when she had to seek solace in the nurses office till mom or dad could pick her up. Sometimes it was because she had been rude to the teacher, even going so far as to drop the f*bomb. She was anxious and fretful. She started missing a lot of school with assorted aches and pains.
Here’s what we found out what was wrong…
We knew that there was an organic problem. Phoebe’s older brother David, is a child psychologist and strongly recommended that she be tested. David opened his dad’s consciousness to possibilities like “selective mutism”, “childhood anxiety disorders”, “Asperger’s Syndrome” and “Autistic Spectral Disorder’s”
We did extensive and expensive testing. Phoebe tested in the 100th centile in reading and reading comprehension. She was reading Shakespeare’s “Romeo and Juliet” at age 10.
Her math skills were at the very lowest centile. She had trouble with spatial configuration and couldn’t separate squares from rectangles or rhombi. She couldn’t tell emotion expressed in facial expression. The angry face and smiley face looked the same to her…and not just on the test page. She still can’t tie her shoes…or make change of a dollar.
Most importantly, she couldn’t look anyone in the eye and would begin to have severe anxiety if anyone looked at her, spoke to her or even talked about her…and she would know. Phoebe has hyperacusis and can hear things that only the very best CIA agent with the very best listening devices, could hear only on their best days.
Our first attempt at therapy ran a year with a very, very uptight child behavior therapist who rewarded Phoebe’s inability to communicate with notions of how she would be rewarded for experiences such as meeting and introducing herself to a set number of people per week and then re-inforce her positive behavior with a gold star. Good idea! We couldn’t get her to say hello to her father. We quit after she chastised our frozen. terrified daughter by sternly telling Phoebe to stay away from the cockatoo that she kept caged in her waiting room.
Still no diagnosis.
The next year was spent in “sandbox therapy”. For just over a year Phoebe would spend an hour a week in silent play in a sandbox, her patient father reading National Geographic in a waitimg room, while I suspect that her therapist was almost certainly trying to establish that she might have been sexually abused by her gynecologist father. That at least would offer one potential explanation for her mutism…She would no longer go…I obliged, but did get a referral for a child psychiatrist.
Enter Sigmund Freud…well not really, but a strict Freudian. Professor Emeritus, no less. He kept a picture of the great Dr Freud in his office. Don’t get me wrong. I have a terrific respect for psychiatry, and the contribution of Dr Freud. But I didn’t believe that Phoebe had a problem in her oral phase, specifically as a result of ”not enough teat”. That might have worked in his original Beverly Hills adolescent practice of teenagers, most of whom had eating disorders, but we knew that we weren’t reading out of the same book, let alone off the same page.
“What about selective mutism, autistic spectral disorders, childhood anxiety disorders?”
It turns out that “our” Dr Freud did not believe much in organic brain problems in childhood psychiatric disorders. He was however, kind enough to offer a refferal to the M.I.N.D. Institute which does specialize in the investigation of autism.
After 5 years of searching we now had a diagnosis. We had an explanation for the anxiety that would paralyze Pheobe, and some medication to control it. We started home schooling and addressed some of the specific learning disabilities that the school system had neither the finances, resources, understanding or qualified personel to deal with. Her mom enthusiastically took it on…in a loving, caring and patient way…she even went back to recover the fractions in math that were “tuned out” five years earlier in the fourth grade…twice.
But there was still no treatment. That’s in large part because individuals with the autistic spectrum have many different disorders and any one of them doesn’t fit all the criteria. There is no treatment…there are only drugs that treat specific symptom complexes, and that in a disorder has many faces. There are many drugs, but not enough experience to identify specific faces that respond to their specific identity. There is no “one size fits all” therapy.
What has worked is the individual and loving attention of her family. Phoebe has always had a good relationship with her younger sister Honor who has an incredible understanding and empathy of Phoebe’s condition. She has also had an innate ability to connect with it. Honor has lived up to her name and take it upon herself to help her older sister make sense of developing a personna as a teenager…no small feat, even for a very mature and uniquely sensitive twelve year old.
Mom has learned to see the world through the eyes of terrified child, as only a mother could, and open those eyes to a world of possibility.
…and dad. He’s thankful for the patience that he has learned and the conviction that he had that Phoebe’s brilliance, has been masked by “demons”. The picture here:
was done by Phoebe when she was 9 years old.
Our home schooling has paid off in spades. Phoebe still has trouble looking me in the eye but talks in short phrases without “growling” at me. I am now responsible for “independent study” and we are studying salmon migration now, which we’re going to follow up with a field trip to Nimbus Fish Hatchery. She has come with me on mushroom forays. We’re having wonderful converations on long drives…actually, I do most of the talking, and I make sure not to make eye contact…but she’s definitely listening, and that’s wonderful.
I’m as proud of Phoebe as any father could be. I have always been more impressed by what people have been able to overcome than who they are. My daughter is a giant.
Happy 15th birthday Phoebe. I love you.
The sunday breakfast picture…the family went whale watching the day before and then a mushroom foray on the Sonoma Coast. The delicious omelet was lovingly made by dad with the “black trumpet” chanterelles that we found at Salt Point State Park. I was the only one to taste it. It seems that when Alan Rockefeller attests to it being non poisonous, everybody is willing to offer that it is delicious in a polenta. There are some (three to be exact), who still are nervous about independently taking the risk of tasting the identical mushroom just one week later for no other reason than dad having identified it.
That poses no problem for me. Except that the last bite will always be available to Phoebe… when she is ready.
For more on autistic spectral disorders:
http://en.wikipedia.org/wiki/Autism_spectrum
For a fabulous and entertaining read:
Look Me In The Eye, My Life With Asperger’s: John Elder Robison
Ken Rosenfeld





