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 blood. 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 be long-term. 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 time. 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 intervention.