IS Hope: Autism
Last Father's Day, the Sunday paper arrived with the biggest
Father's Day gift for my husband. His family was featured on the front page of
the paper with the headline "Autism Battled in Different Ways - Grafton family's
son recovers." Yes, we had come a long way. . .and not just the 3000 miles from
California to Massachusetts.
When our son, Daniel, was
diagnosed with autism at the age of 18 months, it set in motion the biggest life
change of our lives. It now meant we were the parents of a child who was
potentially facing a lifelong disability. Worse, no one had answers on how to
help our child at least be healthy. He was losing weight, had chronic diarrhea
and was so immune suppressed, he caught every cold or flu that came along. A
mother's prayer for her child must move heaven and earth. In my case, I prayed
as though my son's life depended on it. But I also worked as though my son's
life depended on me to get good at finding out how to help him.
Thank god for the internet
arriving at a time when it was needed most. My use of Google knew no bounds when
I surfed the internet for anything that would lead me to the next tidbit of
information. Finally, I googled "diet help for autism" since my son's diarrhea
was so bad it had to be associated with his autism in some way. That search lead
me to starting a diet known commonly as the gluten/casein free diet. Translation
is no wheat, dairy or anything with gluten. Within a week of taking my son off
dairy, I noticed an immediate change in his demeanor. Yet the wheat and gluten
portion was slow for me to get good at. When my son regressed further into
autism, my motivation shifted to be more militant on the diet. The angst of
starting the diet was troublesome. My life was already stressful enough and
adding one more thing might send me over the edge. Besides I was unconvinced he
would actually benefit. And yet he did.
We continued with behavior therapies which helped but still something was
missing in our quest to help Daniel to be healthy. While consulting with a
leading allergy/immunologist in Orange County, California, he did the
unthinkable. He referred us to another immunologist who actually was doing "out
of the box" treatments for kids with autism. The treatments are known as IVIG,
immunoglobulin. It is a blood product of the human immune system and commonly
used for patients who are so immune suppressed that they would die without these
infusions. But the application of IVIG is now being tested with a variety of
disorders, including autism and even Alzheimers.
We knew instinctively IVIG
represented a viable chance for a normal life for our son. I hear from families
who are understandably concerned about the blood component to this treatment and
ask me about why we took the risk. Perhaps it was because the risk for us was
really the lifetime of autism versus a chance at normal. Daniel began treatments
when he was 2-1/2 years old. At that time, he was the youngest recipient of IVIG
to treat autism related immune dysfunction.
His immunologist, Dr. Sudhir Gupta of
University California Irvine, thought he would be a good candidate for the
treatment based on his lab results.
Once started, the impact was almost immediate. He was happy even goofy, one day
after his first infusion. The second infusion was much the same. And then he hit
the fourth infusion and autism walls came crumbling down. He was non-verbal when
we started. By the fourth infusion he was speaking full sentences, albeit the
kind of sentences only a mother could understand. But, hey, he was talking.
By the eighth infusion, his autism doctor (known commonly as a DAN doctor)
declared Daniel to be on the road to recovery. At the twelth infusion, Dr. Gupta
was smiling from ear to ear as he proudly declared him to be one of his
"recovery" kids. Yet, we were uncertain we were out of the woods so we continued
with the IVIG infusions for seven more months.
The true test came when we met with
his regular pediatrician for his four year check up. He observed Daniel, spoke
to him, asked him questions and me as well. He knew all about what we had been
doing and compared them to what he had done for his own children who were also
on the autism spectrum. Finally, he pronounced that Daniel no longer fit the
profile for autism and would not qualify for the diagnosis at that moment. He
was beaming, extolling my virtues as a mother and said he had never seen
anything like it. So, in essence, Daniel had recovered from autism.
Even after losing the diagnosis, we continued to work on other issues that beset
Daniel's medical condition, including a colonscopy to fully address his chronic
diarrhea. We ended up flying from California to New York to one of the only
gastoenterologists who has an understanding of the gut issues children with
autism face. It was determined Daniel had a form of colitis commonly associated
with autism. Medication was started and within a month our prize "normal" poop
The following year , we
determined Daniel would benefit from a sound therapy called Tomatis to work on
how he processed sound. The symptoms he displayed in the classroom were similar
to ADD, yet I knew it was more than inattention. It was the inability to even
understood what was being said. He did not have a hearing loss, but a sound
understanding loss. The therapy worked wonders and allowed him to make great
gains in language, vocabulary and processing speed.
We have also tackled his orthopedic
issues with physical therapy, specialized gymnastics and even horseback riding.
All of which helped him.
Parents who have a child diagnosed with autism today face the same concerns and
angst about their child's future. Families are decimated first by the diagnosis
and then the lack of information and myths that still persist. . .most
particularly the myth that autism cannot be treated. Gratefully, the families
whose children are diagnosed today are now supported in ways not available in
the not too distant past. In fact, my role now is as a mentor to the next
generation of families who are just beginning their autism journey. It is a role
which I did not choose as part of my life plan. But I will never take for
granted the gift of my son's recovery and it's ultimate purpose of giving back.
My mentoring the next parent has now reached into the hundreds. The quest is
that they will find HOPE, understanding and perseverance to help their child
reach their fullest potential.
Today, my son is eight and one of the
top students in his second grade class. He has decided already who he intends to
marry, wants four kids, plans to live on a farm with a dog named Spot. Oh, and I
get to come babysit. It will be my pleasure.
The most beautiful moment that sticks out in my mind was the Christmas following
his start of IVIG. I believe he had just had his twelth infusion. On Christmas
morning Daniel wrapped his arms around my neck and said "Mewwy Kwismas, mommy. I
wuv you." A prayer of thanks from a mother whose child has come back to her must
move the oceans. Because I sure cried enough tears of joy to fill an ocean at
As I write this article, I am filled
with so much I'd like to pass along to the reader who is facing autism. So in
the next set of articles, I will be sharing a bit more on the variety of
treatments that are making a difference in the lives and well being of children
with autism. My son's recovery is actually not as unique as one would think. I
personally know eight other families with recovered kids. The one thing we have
in common is that we caught the disease early (before three) and implemented a
variety of treatments tackling the disease from all angles. I will begin writing
about some of these treatments, therapies and even protocols that are being used
by families. The goal is that someone reading this will wonder enough to do what
I did. . .GOOGLE IT.
Mary Romaniec of Grafton offers advice of the research she has found effective
and has written two previous articles found online at
Email here and we will be happy to pass your emails onto her at which time,
she can contact you!