My Personal Story

The Phone Call
I was on assignment in Malaysia when the call came from my wife. She and our new born daughter Michelle had just been to the pediatrician’s office for her 6 month old check up. Through her hysteria my wife managed to convey that the doctor had told her that Michelle had Cerebral Palsy!

The next morning I was on an aircraft home and for the next 6 months we bounced from Fairfax Hospital and MRIs and CATSCANS to Georgetown University Medical Center for blood tests and a muscle biopsy. When we had first arrived at Georgetown they had placed Michelle on a table in an empty room on her tummy and then assembled an entire staff of doctors and interns around her. We all stood there, for what had to be 60 seconds, while Michelle remained motionless lying face down on the table. Then slowly she began to raise her head to see who was surrounding her, and the whole room burst into applause.

Michelle’s 6 month check up had apparently not gone that well. When her pediatrician had laid her on her tummy and placed his hands underneath the tummy to lift her, rather than “fly like superman” as kids do, Michelle resembled more of a “wet towel,” arms, legs and head all drooping down to the floor, hence the Cerebral Palsy diagnosis.

But the strangest day occurred when, after months of testing, the geneticist at Georgetown University Medical Center came to us dejected and announced, “We just can’t seem to find what is wrong with Michelle. We’ve tested her for everything and I’m afraid there is nothing more we can do.”

Learn to live with It!
Soon after, when Michelle had turned two years of age and was attending public school daily, we visited a developmental specialist who informed us that since she was receiving physical therapy, occupational therapy and speech therapy every day, “You’re already doing everything you can do.” Implicit in this we understood “There IS nothing else to do now and she’ll likely grow out of this.”

There it stood for years: Michelle going to school every day with teachers and therapists and even school administrators who truly loved her and worked with her patiently, even treating her like their own child, but with no movement on the “why or how” or even “what” of her condition. She loved school, hated weekends and holidays but was not academically inclined and seemed to be making no progress reading or writing. My wife was even convinced that since the doctors could find nothing wrong, that there really WAS nothing wrong with our daughter. It took her violence and aggression and ultimately suspension from school in 4th grade that moved us into the next stage of her story. Michelle was now 10.

“60 Minutes”
When Michelle was 7, “60 Minutes” had aired a show about “Conductive Therapy,” a form of physical therapy developed in Romania, which had shown children who could not walk when they arrived, then actually walk out of the facility on their own five weeks later. (There was a conductive therapy center in Canada.)

Well, she was still not walking at 7, and spurred on by this TV story, we made an appointment with a developmental specialist at a major Children’s Hospital in our area. She talked to us, observed Michelle , asked questions and then finally said, “Well what arrangements have you made for this child’s mobility? Obviously she will never walk. Have you created lifts, and ramps and do you have a lift in your car? When are you going to get this going?” We decided in the elevator that we were all going to Canada.

The next summer we spent the 5 weeks in Ontario and indeed Michelle did walk out of there on her own for the first time. I no longer had to carry her everywhere we went! So much for developmentalists we thought.

Meltdowns at School
But now her behavior was causing a real crisis. Wacking or kicking the teachers, sometimes even being aggressive with other kids, and again we didn’t know where to turn. The teacher would usually call home in mid- morning and ask for her to be picked up from school right away, as she had either struck someone or was disrupting the class.(Some of the incidents were even reported to the State of Virginia as “assaults” on a teacher.)

But after a while when they called my wife she would refuse to pick her up. “If I punish her at home for something that happened at school,” she’d explain, “she doesn’t get it. This all happened in school and that means you need to deal with it at school.”

That’s when my phone would ring, and I’d go pick her up.

After a while I caught on to this procedure but it all highlighted a significant hole in her education: she had no behavior plan. We had attended IEP meetings for years, discussing recognition of capital letters, 3 times out of every 5 attempts, and using scissors for “hand over hand” cutting, and identifying shapes and colors, but never had her behavior been discussed, or how to react if she didn’t behave. And of course her academic progress over those years was somewhere between nil and none.

Nevertheless, we were told in no uncertain terms that unless we got a psychologist involved to deal with her outrageous behavior, she would continue down this path and may not be welcomed back to school.

The Ears
Michelle also had, what seemed to become, an annually recurring ear infection. Three different ENT’s had seen her over the years and all had come up with the same solution: ear drops, tubes for drainage and see me again in 6 months. Well, we needed to reconnect with the Georgetown University professionals who had dealt with her before, to seek out a “Physiatrist” about her behavior and overall management, but 9 years later would they remember her? I learned they had moved on to National Institute of Health (NIH) and called them immediately, hoping to reconnect. “Oh how is Michelle doing? I think about her often,” was the immediate response. Joy to my ears. NIH is federal facility not open to the public but I asked if they would see her and the answer was “Of course we’d love to see her, bring her next week.”

Waiting for us that day was an entire team of NIH specialists. All of them either examined Michelle or scheduled a follow up appointment. I explained about her ear problems and asked about an ear nose and throat referral and was sent up to an ENT office on the spot. He talked to us, examined Michelle, learning about her history of chronic ear problems, which nevertheless had caused her no pain. “Has any of the doctors you’ve seen ever mentioned the term “Cholastiatoma?” he finally asked. No, not to me. He was clearly disgusted and said something under his breath then began to write out several prescriptions, mostly instructions to follow: Michelle would need a CATSCAN of her ear immediately.

Back to her behavior.
I had found a pediatric neuro - psychologist who examined and tested Michelle and who determined that although 10 years of age, Michelle was operating at the level of a 2 – 3 year old. Now what?

His office was a good distance away in Maryland and he recommended a local pediatric psychologist for us, who was actually on contract with our county school system, but after contacting that office it became clear to me it would not work.

I started up the special education “chain of command” and visited the supervisor who had known Michelle from the beginning and had worked with her years before. She immediately began the process of finding help. It was soon thereafter that Michelle managed to “draw blood” in an incident in the school bathroom, an incident which focused everyone’s attention. (The fact that it was her own blood may have been lost in the report.) The supervisor immediately arranged that a behaviorist be appointed by the school system to take Michelle’s case. And as it turned out, this behaviorist was the same person recommended months before. This would be a major turning point for our daughter.

The behavioral intervention has made the greatest positive impact to date and we are extremely grateful for it. The psychologist created one behavior plan for home and one for school. Michelle’s teacher and aides adopted it immediately and the results are that her behavior quickly turned a corner. Now she will be far better prepared to work with a new teacher at her new Middle School in the fall.

As far as the ear problem is concerned, we followed the instructions of the NIH Ear Nose and Throat doctor to the letter, and within 6 months Michelle had had 2 operations, minor and then major surgery, which not only removed the diseased tissue from her ear canal, but also RECREATED her ear drum, which was MISSING, eaten away by chronic infection. None of the previous ENT’s had diagnosed this since each time we took Michelle in, her ear was infected, and the ear drum not visible. But the “chronic, recurring” problem, which “caused no pain” should have been a clue for them that a serious condition had developed.

Lessons Learned
What has come out of these experiences is the value of friendships with those who care about my daughter. This was on clear display recently at the untimely death of Michelle’s Mom.

What has also come out of these experiences are several other realizations that may be relevant for other parents who find themselves in this spot:

First, Michelle never had a “Manager” for her development. I had never heard the term “Physiatrist”,
or doctor of physical medicine, until she was about 10, and yet that profession is the one to guide parents of children such as Michelle : extremely low muscle tone with all the subsequent physical problems that result from that condition.

Another is that a social worker should be involved from the beginning. Only a social worker really understands program options available to parents for help in all kinds of areas. Remember, I carried, lifted and pushed my daughter everywhere she went until the age of 8, and yet all during that time, because of her disability, she had been eligible for a MEDICAID WAIVER, which provides an attendant to assist her.

Thirdly, USE THIS WEBSITE as a first step in finding support. It is meant to function as a “one-stop-shopping” experience for parents who suddenly find they need help and don’t know anything else.

Lastly, we are creating a position of “counselor.” It is a volunteer position staffed by parents who have gone through much, or by persons in the special education profession. In all cases they will be speaking from their own personal knowledge or experience and their advice is meant to help guide parents to other resources. We are finalizing the specifics for this position.

I hope that these few suggestions and the website and counselors will make a difference with you and your child.



“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world.”

-Marianne Williamson