Our journey to adopt our daughter was not an easy one
I am the parent of three
older boys adopted from Russia through Cradle of Hope. One falls into the
category of Psychosocial Dwarfism or "Failure to Thrive." The parenting of this
child has been the greatest challenge of my life. His progress has been the
stuff of much of my writing and research over the last 22 months as well as an
ongoing dialogue between myself and a number of parents who are raising children
with the same cluster of issues. The uniqueness of my perspective and the reason
for this article is that I have seen firsthand the positive outcome possible
with determined effort. The first step is identifying the disease.
Like a lot of other psychological and physical disorders, failure to thrive
shares symptoms with a number of other post-institutional issues. The classic
definition of psychosocial dwarfism is height, weight, and head circumference
all under the third percentile. (I have my own, purely intuitive theory on this
which I'll mention at the end of this article.) A bone study, if done will
usually show delayed skeletal growth. If you want definitive evidence, a
pediatric endocrinologist can measure growth and stress hormone levels in the
What you do need, ABOVE ALL ELSE is an exam by a developmental pediatrician if
your child's medical history indicates a smaller than normal stature and/or
developmental delays. "Failure to Thrive" is not a common diagnosis. It's also
called "abuse dwarfism and hospitalism."
Unless your regular pediatrician has a terrifically good working knowledge of
developmental milestones and growth rates, this issue may slip by unnoticed.
Psychosocial dwarfism is something rarely seen in general practice, so this may
be an issue with which you regular pediatrician isn't familiar. If the disorder
is suspected, you may be referred to some other professionals for evaluation.
Therapy is geared to treating the individual symptoms of this disorder and may
You can't possibly know the full weight of this diagnosis unless you've lived it
with a child. It means that they have lost the will to go on from day to day.
The depression they suffer keeps them from eating, so they don't gain weight.
Their little bodies are flooded with overactive levels of stress hormones. The
overactive stress hormones depress their growth hormone function, so they stop
growing. Their hearts beat as fast as little birds. Their temperatures are often
elevated. They are in a heightened state of susceptibility for disease. They
have sleep difficulties. In institutional care, lots of them just die.
A Long Road for A Very Small Boy
Sergei came to live with us in late October 1996. He left the dietsky dom at 5
years 3 months weighing 29 lbs. and standing 38 inches tall...the size of an
average 30 months old toddler.
After three months with us, he was speaking almost no English and very little
Russian. Mostly, he repeated what others said and did. He seemed to have no
concept of himself as an individual. He was also having problems with spatial
perception, balance, and gross and fine motor ability. I was very concerned
about possible mental retardation, FAS/FAE, and Sensory Integration Disorder.
This was a little boy who seemed to be walking around in a fog almost all of the
Our developmental pediatrician evaluated Sergei's hyperactive behavior along
with his lack of understandable speech and referred us to an occupational
therapist who specializes in Sensory Integration Disorder. Sergei's behavior
during this period was terrible....lots of tantrums, self-abuse, "crashing" into
people, walls, cars, etc., clinginess, "floppiness," and a decided reluctance to
attach to me. I quietly wondered if we were seeing attachment disorder and
consulted with a psychologist who felt that we needed to rule out SID before
worrying about RAD. Still, he was a VERY DIFFICULT child to parent in the first
14 months we had him.
The OT evaluation was done at the beginning of February. Sergei was diagnosed
with moderate to severe SID. Therapy began right away. We were told that
improved gross motor skills would have a very positive effect on his speech
ability. After several months of therapy, we were discharged from the program.
We used our first summer vacation to expose him to a controlled diet of sensory
stimulation. We all had high hopes. His gross motor skills had improved
dramatically, but we still didn't see the corresponding progress in speech we
had hoped for.
Sergei went back to school that fall to repeat kindergarten. We saw the expected
increased levels of anxiety so we revisited some of the OT techniques we'd
learned the previous spring at OT, including the "brushing" technique. What
happened next was the decisive factor that set our course for success.
Worry and Setbacks
With the brushing came a TOTAL loss of bladder and bowel control, resurgence of
SID issues including a need to over stimulate, continuing eating disorders, but
worst of all A COMPLETE LOSS OF ENGLISH!!!! One day into the third week of the
school year (he'd been in America for 11 months) he got up and just couldn't
speak ANY English at all. Granted, he didn't have a wide-ranging vocabulary
anyway, but I went into a total panic. He was also dissociating at mealtime,
especially at dinner when he was most tired. He began to lose weight. We had to
beg him to eat. He had terrible headaches and sometimes would just put his head
down on the table and weep. I knew we needed to look further for help.
We saw a psychologist beginning in September 1997. Sergei has some complex
psychological problems stemming from preverbal trauma, abuse, and neglect. He
suffers from anaclytic depression which is a kind of extreme separation anxiety.
He's done wonders in play therapy having started out in the "infant fog" that I
intuitively labeled at the beginning. Over the course of his therapy, he was in
a lot of different phases of development all at the same time.
ADD was always a concern because of Sergei's frenetic activity level. Slowly, he
began to bring the shreds of his life together in a successful way. This
"nervous energy" which shows up as hyperactivity is his central nervous system's
release valve. It's a typical component of psychosocial dwarfism, and it does go
away in time in most cases. In spite of all his difficulties, medication has
never been advised.
We addressed his speech difficulties simultaneously. After an initial evaluation
by a Speech Language Pathologist, we started him in traditional therapy. Doing
both therapies together worked extremely well, and he scored an overall 91% on
speech tests after several months of twice-weekly appointments. The resource and
Learning Disability specialists at his school were astounded by his progress. We
had spared no expense to get him to this point, and the expense had been
considerable. My reasoning was, do it now, or do it for longer, later when it'll
cost even more.
Sergei turned 7 on August 6th. The 29 pound wonder of 22 months ago has
blossomed over the last year. He was discharged from his psychological therapist
in June and has finished with this round of speech therapy. His whole life is
coming together! He's firmly attached after our long and hard battle for his
trust with me. Now that we've been able to piece together the desolation of his
previous life, it's easy to understand his pain and suffering. A few months ago,
it was unfathomable. The true miracle is that he didn't die of grief and
depression in Russia. He's firmly "on board" with us, his speech has improved
dramatically, and his newly found confidence and well-being are permeating the
entire family. We're all enjoying him enormously. On the night we celebrated his
birthday, he chose to say the Grace WHICH HE SANG out of sheer joy. His
transformation is nothing short of amazing. He is currently in the 15th
percentile for height and 5th for weight. In the past 22 months, he has grown 6
1/2 inches and progressed tremendously in cognitive and emotional development.
We're now moving from a life steeped in post-institutionalized problems to one
that focuses on general parenting issues. This, in itself, is an enormous leap
forward for our family. We've had marvelous professionals to help us get this
far. I won't hesitate to call on any and all of them again when we need help
I count myself so lucky and so blessed to have made the decision to parent this
child. Because of Sergei, I've learned a great deal about a fascinating subject
which connects developmental and physical delays with psychological issues.
Understanding him has helped me help others who take on the parenting of these
children. Maybe some of you who are just starting to identify issues of
psychosocial dwarfism in your own children can take heart and reflect on one
family's success against huge odds. It's hard, hard work, but it can be the
greatest reward imaginable!
Psychosocial Dwarfism - A Definition
After a long search for answers to my son's problems, I found all of them within
the covers of a book called Kasper Hauser: The Syndrome of Psychosocial Dwarfism
by John Money.
Kasper Hauser was a "physically stunted adult with the mind of a child, who was
abandoned at the city gate of Nuremburg in 1828, after seventeen years of
neglect and isolation in a dungeon." The first section of his book is a
compilation of background research which started in the 1800s and continues into
present day. The second section is a longitudinal study by Dr. Money and his
team of researchers which includes are a large number of subjects. Their
progress or lack of it is noted with explanations.
In Money's introduction, he states, "One of the ironies of altruism is summed up
in the maxim that no good deed ever goes unpunished. For the founders of
orphanages for abandoned and homeless children, the punishment for their good
deed was that these institutions exposed their inmates to the potentially lethal
syndrome of institutionalism. The victims of institutionalism fail to thrive.
Some of them waste away, and they may die. Those who survive fail to achieve
full growth, in stature, intellectually, and socially.
True psychosocial dwarfism is a progressive disease. If a child remains in a
dangerous environment, the child's cognitive and linear development continues to
deteriorate. Once taken out of the abusive/neglectful/terrorizing situation and
placed in a safe and nurturing environment, there is usually a quick beginning
to the recovery process. The recovery process itself may take months or years to
bring that same child up to a standard norm. Therapies must be aggressive and
consistent.....psychotherapy for emotional disorders which will include eating
disorders, analcites depression, and hyperactivity; occupational therapy for
sensory integrative issues; speech therapy for language delays. There may also
be medical, dental, and vision issues caused by this same syndrome which will
also need intervention.
At the time of Sergei's first exam, I didn't understand why the developmental
pediatrician delivered the diagnosis with such foreboding. She was so pleased
that I "took it so well." In fact, I didn't have a clue then what we were up
against. She mistook my ignorance for courage!
As mother to one diagnosed case of "Failure to Thrive" I know how frightening
and difficult this diagnosis is to deal with. Reading John Money's book has
given me a fresh new perspective on my child's developmental potential and
expected progress rate. It has dispelled the doom and gloom I felt upon first
getting Sergei's prognosis. I recommend it highly to any and all who suspect
psychosocial dwarfism in your children.
As I mentioned at the beginning of this article, I have my own theory about the
impact of psychosocial dwarfism in post-institutionalized children. Even though
the classic diagnosis is made when height and weight are below the 3rd
percentile, I feel there are many children who are adopted from orphanages in a
state of serious deterioration and decline. They may not be below the 3rd
percentile in height and weight at the time of placement, but fail to grow for
several months and exhibit marked symptoms of depression, hyperactivity, SID,
speech, cognitive, and developmental delays. It's my personal opinion that the
risk to these children who don't quite fit the classic presentation of Failure
to Thrive is equally as great and needs just as much intensive professional
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