Comments from Parents
About the Healing Program
“Mom’s Know” (And Dads Do, Too)
In Healing the New Childhood Epidemics, I often used the phrase “Moms know,”
to convey the acumen and intelligence that most parents possess when it comes
to their own children. So often, the moms and dads of autistic children, as well as
other 4-A kids, seem to know almost as much about the health and well-being of
their children as do many well-trained medical professionals. This lofty level of
knowledge is reasonable and predictable, though, because so many of these
moms and dads have accepted parenthood as their primary role in life, and most
of them are willing to bear any burden, assume any expense, or travel any
distance to gain a better understanding of what’s happening with their children.
They become experts in their own right.
Many of the comments here were derived from extensive interviews with parents
that were conducted during the research phase of Healing the New Childhood
Epidemics.
Lynne Avram, R.N.
Paul’s Mother
Autism Spectrum
“I’m a good nurse, and I do what the doctor says. I believe in the medical model.
However, when our son was diagnosed, the most common attitude among his
doctors was, ‘There’s no hope. No treatment. No chance of recovery. Your child
will regress, and probably end up in a group home, unable to communicate with
you.’ I was incredibly frightened, especially because during Paul’s first year, he
had been fine. I’d had a normal child, and had lost him....
“We couldn’t leave him alone because he needed constant watching, to keep him
away from danger. It was isolating. We couldn’t do the basics, like cooking and
cleaning. Even at age four, it was like having a toddler who had just learned to
walk. He was like a perpetual toddler. He would put metal objects into electric
outlets, eat Christmas tree decorations, and run away, constantly. We had to fence
in our yard and put locks on all the doors just to keep him from running into the
street, or worse. Until you’ve lived through it, you can’t imagine it....
“There are a thousand stories like ours. I’m not unique. I’m just stubborn. The
real story is that you don’t get a miracle. You suck it up and go in the trenches for a
few years. That’s the story. It’s not pretty. But life isn’t pretty....
“Paul’s autism is my biggest blessing. He’s taught me about what’s really
important in the world. We’re a Christian family, and we believe that love heals.
My husband and I had to get to the point where we said, ‘Look, this is our child, the
child God gave us. This is the child we love, and we’ve got to love him at this
moment, exactly how he is, and not for who me will be if this treatment works’....
“Autistic kids can read hearts. They know. Paul knew Dr. Bock was on his side,
that this man wanted to help....
“Paul’s first sign of recovery came around his third birthday, when he was on the
gluten-free, casein-free diet, and vitamin therapy. He started sleeping through the
night, and started to talk, notice, and interact. He emerged into our world....
“Paul is almost perfect now, as far as I’m concerned. He looks like an ADHD kid,
with typical ADHD focus issues, and some learning disabilities in reading. This
year in school has been tough, but he does play Little League, and did really well
this year on an aquatic diving team, with no issues at all. He has friends, goes to
their houses to play, loves playing pickup football and basketball games with his
older brother’s friends, and seems to do quite well. He is not completely
mainstreamed, because of his foucs issues. He has a hard time paying attention
in a large classroom.
“The ‘ah-ha’ moment for me came one day when I was leaving for work. Paul often
had anxiety about me leaving, but that day he looked at me and said, ‘Mama, when
you go to work, I’m lonely. Being lonely means you miss someone.” At a later time
he said, “I love you, and you love me. You will always be right here, in my heart,
and I will always be in yours.’
“I still have a hard time talking about that without crying.”
Liza Winters
Alisa’s Mother
Autism Spectrum/ADHD
“At around 4 to 6 months, Alisa’s babbling began to decline. It stopped altogether
by 10 months and she was no longer responding to her name or to our affections.
She sat in her playpen contentedly for hours on end flipping through books over
and over again and chewing on them. Literally, eating her books....
“At 18 months Alisa was pacing back and forth in her crib obsessively, flapping her
hands, and arching her back when I went to pick her up. I spoke with her
pediatrician about this several times, but he told me she was fine, that she would
outgrow it. Finally, at my mother’s insistence, I asked for a referral for an
audiological evaluation. Alisa’s hearing was within normal range. At the next well
visit, my mother, a school psychologist, came with me and, unbeknownst to me,
told the pediatrician that she thought Alisa had autism. The pediatrician told her
she didn’t know what she was talking about....
“At 21 months, we self-referred to our local Early Intervention program for an
assessment. There, Alisa was assessed at 7 months for emotional and social
interactions, 8 months for receptive language, 13 months for expressive language,
and 15 months for cognition. My first thought was possible mental retardation, and
that scared me. At 27 months, Alisa was diagnosed with PDD-NOS. Finally, I had
some answers and I was no longer in denial.
“Alisa would get these awful rashes on her face, and gastrointestinal symptoms.
She had only two words, but they were not functional words. She refused to sit on
my lap, she was unresponsive to her name, and she very overly sensitive to touch.
Her play was perseverative and ritualized....
“We started out with two hours of early intervention every week, and after the
diagnosis, it was increased to 16. We did round-the-clock Floortime, which helped
to connect Alisa to the world. I began working with a nutritionist and pediatric
gastroenterologist when Alisa was 3, and she was put on a soy-free, gluten-free,
dairy-free, additive and dye-free diet and also vitamins, supplements, and
digestive enzymes. It helped a great deal with her gastrointestinal issues, but still,
it was not enough.....
“At 3, almost overnight, she became very hyper and disregulated, she began
having a tic, and she had her first tantrum ever. Her neurologist prescribed
Risperdal, which really helped to calm her down, eliminate the tic, even out her
moods, and make her less sensitive to touch. At 5, her gastroenterologist
performed a colonoscopy and endoscopy and diagnosed Alisa with colitis. Over
the years Alisa became more and more disregulated, and she was diagnosed
with bipolar and ADHD at the age of 6. She had rages that lasted for two hours or
longer, sometimes multiple rages in a day. She broke my finger, two lamps, and
put her foot and hand through walls and doors numerous times. I didn’t think it
could get any worse....
“At around this time, I attended a Defeat Autism Now conference in Boston, and I
heard Dr. Bock speak. I knew he was the person we needed to see. Dr. Bock has
a calming, soothing way about him, and he’s not detached, the way some doctors
are. He’s very invested in his patients....
“He didn’t make any dramatic changes in her biomedical treatment right away, but
he did recommend intravenous glutathione, and he wanted me to go get her strep
titers checked....
“Then Alisa had one of her worst rages ever, and I called Dr. Bock, and he said, ‘I
want you to get her strep levels checked immediately.’ I knew he was thinking
PANDAS, the strep condition that attacks the immune system and the brain, but I
never imagined it could apply to Alisa, since she had never had a strep throat
infection in her life. But Dr. Bock is our medical detective. He picks things apart,
little by little, to get down to what’s really happening. None of her other doctors
ever really seemed to dig deeply enough. I’ve seen more than 20 doctors....
“Alisa did have PANDAS, which we control with penicillin, and Dr. Bock continues
to tweak Alisa’s regimen of supplements, and make suggestions for medication.
He started her off with monthly glutathione IVs to boost her immune system and for
detoxification. The first round of glutathione was amazing. It had a very calming
effect on Alisa. We did this for almost 2 years and I soon discovered that Alisa’s
gut was pretty well cleaned up. She was no longer allergic to dairy, gluten, or soy....
“Over time, her symptoms have subsided significantly, as we tried many things.
But Alisa is very complex, and she has difficult-to-treat issues. There is no one-
size-fits-all treatment. You have to try everything until you find what works for your
child. And you must focus on the biomedical aspects...
“She’s doing so well now. She is more social than most typically developing kids,
and you can’t get her to stop talking. She is very bright and does well
academically. She is figure skating 5 hours a week and performing in ice shows.
She’s 11 going on 16, and she’s a real girly-girl. I’m so proud.”
Ron Frank
Father of Hugo Frank
Allergies
“I’m a very hands-on, involved dad. I work from home, and have the time and the
flexibility to be involved with my kids and all their after-school activities. So I sit in
front of the computer screens in my home office in the mornings and early
afternoons, then I start chauffering....
“I loved parenting even when Hugo was first born, and I was doing a lot of
diapering. When Hugo was one year old, though, I felt that he was allergic to milk,
so I gave him a lot of soy milk, which he loved. I was thinking that soy was a smart
alternative to dairy....
“But I now know Hugo was also reactive to soy. It was part of the reason that he
developed chronic respiratory infections, which required extensive courses of
antibiotics. I was disturbed by the constant antibiotics.
“Dr. Bock was the one who figured out that Hugo had multiple food reactions, and
reactions to multiple inhalants, including cat hair and dust mites. Hugo’s system
was just overloaded. As Dr. Bock described it, it was as if you filled a cup up to the
brim, and then keep adding more to it, as it keeps spilling out. The cup represents
the immune system, and it keeps getting filled up with allergens until it is
overwhelmed, and leads to systemic breakdown. Your capacity to deal with more
allergens just goes away. Hugo was getting bombarded. After one course of
antibiotics he would feel better, but then in a week or two, he’d be sick again....
“Hugo was in bad shape, and getting worse and worse. I knew something was
wrong, since he’d been on antibiotics six times in one year. During all of this,
none of the doctors mentioned allergy. That’s when I went to Dr. Bock, and I think
he saved Hugo’s life. We just weren’t getting anywhere with the standard medical
approach. Hugo had developed pneumonia, and the cycle was just getting worse.
“It hasn’t been an easy time. There were some terrible issues, including cancer,
that did not appear to be directly related to the other problems, but were probably a
reflection of overall health. Dr. Bock was there for us throughout all of that.
“Now Hugo is a bundle of energy. He’s really thriving, and is very strong."
Mary Matthew
Gabriel’s Mother
Autism Spectrum Disorder
A letter to Dr. Bock:
Friday, August 26
“Dear Dr. Bock,
“Here is Gabriel’s school progress report. We are thrilled with his many
improvements. Thank you for everything. Attached is a recent picture of Gabriel.
As you can see, he is having a great time. Thank you again, and hooray for
summer!”
ATTACHED REPORT FROM SCHOOL: “This year has been one of transformation
for Gabriel. We have seen incredible cognitive and academic success in math,
and pre-reading skills, group work, and creative arts, but the greatest and most
dramatic change has come in the social arena. He seems truly comfortable, safe,
and content in his own skin, and has opened his heart and his mind to friends and
teachers alike. He is asking questions, offering solutions, showing his sense of
humor, and fully participating in classroom life. The experience we have had with
Gabriel has been a joy. He is funny, strong, capable, and always surprising. We
fully expect Gabriel to continue his forward journey, making continued great
strides. With friends to model, information to gather, and horizons to challenge
him, he will soar!”
Harry Eisenberg
Alan's Dad
Alan has made tremendous strides socially. Hitherto his social
skills (or lack thereof) was our greatest area of worry for his
future. Two weeks ago his "teacher of record" with whom he has two
classes every day called us in. This man happens to be a veteran
special ed teacher with over 30 years' experience. Fortunately for
us, he takes a great interest in his students (and interestingly his
son has followed in his footstep and is now also teaching special
ed). In any case, he told us Alan has become very sociable and he
has gotten similar reports from other teachers. So much so, he said,
that he feels Alan is no longer showing any signs of autism.
However, he said, Alan does come across as quite immature and in many
ways is on the level of an eighth-grader. (Alan is in the eleventh
grade.) He attributes this to what Alan has missed out on in the
past but expressed confidence that he will catch up in time.
