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The Adoption Process, Disabled Children

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In an introductory article, I described the three flavors of adoption: foreign, domestic infant, and older child. As an adopting parent, you must decide which approach is right for you, because they differ markedly in process and outcome. Foreign adoptions involve issues of immigration and citizenship, and the uncertainties surrounding prenatal and postnatal care in the host country. The domestic infant is usually placed voluntarily, whereupon the birth mother may change her mind (within the first few months) or request ongoing contact with the child throughout life. Finally, the older child is managed by various courts and state agencies as he passes through "the system". These represent variations in the adoption process, but there is another factor that separates the older child from an infant, a difference that persists long after the adoption is complete. The older child is almost certainly disabled -- physically, intellectually, socially, or emotionally. Granted, there are no 3 A.M. feedings, but your nights may be interrupted by medical care or impromptu counseling sessions.

In a public statement [1], The Minnesota Department of Human Services supports these broad claims. "Of the 1,002 children waiting for adoption: All have been traumatized during their critical developmental years. Most, if not all, will need additional educational, medical or psychological help as they grow toward maturity. 70 percent are siblings who need to be adopted together." If we extrapolate these statistics by population [2], there are 57,800 waiting children in the United States, and almost all are disabled, or associated with a disabled sibling.
When describing disabilities, most agencies and registries place waiting children into several broad categories. The handicap is declared physical, mental, emotional, or learning, and it is graded mild, moderate, or severe. In some cases a child falls into two or three categories, such as mild-physical and moderate-emotional. Sometimes a child has no disabilities whatsoever, but he has a disabled sibling, and the agency wants to place them together. Still other disabilities are covert, and don't rise to the surface until the child has lived in a stable environment for several years. If anything, these broad labels underestimate the prevalence of psychological and social disabilities within the community of waiting children. Still, it is a good place to start. The following table reflects the waiting children in a national, on-line database [3]. The last row shows the percentage of children with mild, moderate, or severe handicaps, in any category.

Disability - None Mild Moderate Severe

Physical - 64% 28% 8% 0%
Emotional - 6% 66% 22% 6%
Mental - 84% 8% 6% 2%
Learning - 72% 16% 12% 0%
Highest - 6% 54% 32% 8%

In addition to these broad categories, which provide a valuable overview of the child, I have developed a second classification scheme, which more accurately reflects the origin of the disability and the techniques that will prove effective in treating or managing the disorder. Before we brought our two adoptees (brother and sister) home, we assumed they fell into category two (below), when in fact they belong squarely in category three. In this sense we were ill prepared for the issues we would soon face.

1. The child was born with a serious handicap, and the parents decided they were not physically or emotionally able to care for the child. The placement was voluntary, and although the child may feel abandoned, he was not directly neglected or abused. The handicap is usually physical or mental, moderate or severe.

2. The child was born healthy, but was abused or neglected by his parents. Had he been raised in another household, there would be no disability.

3. The child was born with a neuro-chemical imbalance that is often mistaken for bad behavior, especially among undereducated parents. Standard parenting techniques, from gentle positive reinforcements to harsh punishments, have little effect. Discipline escalates until it reaches the legal definition of abuse, and the state terminates parental rights. Although abuse, even verbal abuse, inevitably leaves its mark, the primary disorder is neurological, and must be treated as such.

Most children in this category are impulsive (I think therefore I act), hyperactive (in constant motion), or explosive (erupting in anger at the slightest provocation). These external symptoms (not true diagnoses) are often intertwined, related manifestations of a neurological condition that is poorly understood. Until the underlying disorder is managed, standard behavior modification techniques will prove ineffective.
Waiting children can often be placed in category 1 without ambiguity. The physical or mental handicap is severe, and parental rights are usually relinquished voluntarily. However, most therapists, social workers, and adopting parents lump all remaining children into category 2. In fact, many are not aware of category 3 at all. Yet the distinction is critical. Does the child need counseling by a trained therapist, well versed in issues of abuse and neglect, or does he require prescription drugs, diet therapy [4], or a radically different form of behavior modification [5]? If the parents travel down the wrong path, the child will not be helped, and may even be harmed in the process.

When an adoption agency handles older children, it should (ideally) discuss these three types of waiting children with prospective parents. If the adoption is to be successful, the agency should also offer training, commensurate with the category. Of course an agency cannot acquire in-house expertise in all the disabilities that comprise category 1 (e.g. Downs, CP, fetal alcohol, etc), but it could point the parents towards appropriate seminars, books, and support groups. Many agencies do offer training in issues of abuse and neglect, assuming the vast majority of waiting children fall into category 2. I have taken several of these classes, and found them quite valuable. However, as we move to category 3, the lights dim once again. I have never attended, or even heard of, a class that addresses common neurological conditions such as severe ADHD. Prospective parents need training in neuro-pathology, as well as the psychology of abuse and neglect. You have to be a near expert in both fields to separate the two effects and treat your child's complex condition.

Although it is merely an anecdote, I would like to consider a specific case history -- my son, whom I will call John. When John first entered our home, I watched him carefully as he interacted with the family dog, since this is a prime indicator. He bonded with the dog immediately and treated her with kindness and empathy. His love for his sister, whom I will call Mary, was also evident, and his somewhat desperate love for us grew with each passing day. He did not exhibit the psycho-social symptoms of abuse. Yet something was terribly wrong. John was unmanageable -- out of control. He broke three items per day, some trivial and some valuable. There was no malice or vandalism; we were simply living with Curious George incarnate. At the same time he often inflicted minor injuries on his sisters through reckless play. He was in constant motion, babbling loudly and incessantly from morning till night. Most of the time his speech exhibited the impediments of a child half his age: W replaced R and L, and the pitch was high and squeaky (Elmo-speak). Although he was always getting into trouble, often defiant, and sometimes violently oppositional, there were times when the sunshine of his kindness and intellect broke through the storm clouds of hyperactivity, rare glimpses of hope in an otherwise dark and tumultuous world.

Despite a series of parenting classes that emphasized adopted and/or abused children, our attempts at behavior modification were failing miserably. I finally realized he could not control his actions. Our battery of admonitions and time-out punishments accomplished nothing; they only served to pummel his already weakened self-esteem. If we stayed this course for another six months, his gentle spirit would be crushed between the studded wheels of his neurological juggernaut and the inflexible pavement of our "consistent" rules and consequences.

One night, after an entire day of misbehavior and physical containment, this remarkably perceptive 6-year-old said, in a defeated voice, "Daddy, I'm trying so hard. But I'm very tired. I just want to go to sleep." Although he could not fully articulate, I was able to read between the lines. "I'm tired of always getting into trouble, tired of being the bad boy at school and at home, tired of hurting my sisters, tired of exploding into anger every time you ask me to do something, and tired of fighting you, because I really do love you." As he began his pre-sleep rocking in his bed I realized that I too was tired. Tired of monitoring his every move from morning till night, tired of putting him in extended time-outs, tired of declaring rooms and activities off limits, tired of physically managing his tantrums, and tired of the steady stream of sincere apologies from his small, broken spirit. "Sorry for all the things I did wrong today." His contrition was always genuine, because his actions were not his own.

Physicians, therapists, social workers, and teachers have all suggested, on numerous occasions, that John's difficult past is directly responsible for his antisocial behavior. They are willing to admit that his constant fidgeting and babbling is neurological, but his defiant and impulsive behaviors, which are obviously under conscious control, are surely shaped by the traumatic events of his past. "He's just acting out -- trying to get attention -- any kind of attention -- good or bad -- and bad is easier to get. He needs to learn a new system of values -- a new way to give and receive love. Have you started him on therapy yet?" I accepted this environmental explanation (category 2) for some time, though in retrospect I don't know how they decided which symptoms were involuntary and which ones were subject to operant conditioning. Consistent with their unanimous advice, we implemented a strict program of behavior modification and therapy, which was utterly pointless. Finally the experts' explanations, a boundless source of guilt for parents of difficult children everywhere, became entirely untenable. John clearly wanted to be good; he simply could not.

We were initially receptive to the environmental hypothesis because we had witnessed the correlation first-hand. While scanning through the adoption roles, we reviewed hundreds of waiting children in detail; many were diagnosed with ADHD. This couldn't be coincidence -- but how could trauma and abuse induce impulsivity and hyperactivity? Boiled down to its essence, the experts were telling me that John misbehaved because of his abuse, in order to bring on yet more abuse. This seems unlikely in the extreme. A child might shut down completely, or disassociate, or develop multiple personalities, but he will not engage in behavior that consistently draws abuse. Clearly John's impulsivity was hard-wired, just like his fidgeting and his short attention span. Even if the punishments were unthinkably harsh, as they were in his past, his behavior would not be redirected.

So why the correlation between ADHD and abuse? I believe there is a connection, but it often runs the other direction. Have you ever tried to parent a child who picks up an expensive glass vase, asks you if it is breakable, grins broadly, and drops it on the floor? Have you parented a child who does and says whatever crosses his mind, all day long, no matter the consequences? If you have, then you know how frustrating it can be. You will do almost anything to modify the child's behavior, and nothing works. I have spoken with several hapless parents of ADHD children who have resorted to corporal punishment on occasion, and regretted it deeply. Only the most patient and well-trained parents can manage these children.

Unfortunately the birth parent often has a similar neurological disorder, as these disorders tend to run in families. She may be unable to raise children effectively, even under the best of circumstances. And when the child cannot control his behavior, discipline may go to far, or, she may put the child up for adoption voluntarily. This courageous decision is certainly in the child's best interest; we can only imagine how difficult it is for the birth parent.

John is not the only member of my family to receive a psychological diagnosis for a physical disorder. Last October our daughter Mary developed a sudden allergic reaction to an unknown substance. Her throat constricted, making speech impossible and breathing nearly so. She was barely getting enough oxygen. We rushed her to the emergency room, where the triage nurse suggested Mary "take relaxation classes." When we met the attending physician, we told him we had no idea what the allergen might be. Mary had not eaten any novel foods or been exposed to any unusual chemicals. Since we did not have the causal agent in hand, the physician told us to "Consider a psychological explanation. Maybe she's trying to get attention. Did this start after you said no to her?" The next day Mary's pediatrician also dabbled in child psychology -- rather like watching Michael Jordan play baseball. When doctors cannot understand or treat a malady, they assume it is psychosomatic, especially if the patient is a woman or a child [6]. And when the patient has a troubled past, e.g. an adopted child, the psychological diagnosis is practically inescapable. Needless to say, this ubiquitous bias is extremely frustrating for the parents of a sick child who is in desperate need of quality medical care.

If you plan to adopt an older child, accept the inevitable -- your child will be disabled in some way. Decide which of the three categories you are best equipped to handle. If you have some expertise with a particular medical condition, such as CP, you might want to take a child from category 1 who exhibits that particular handicap. However, most parents do not possess this expertise, hence they seek a child whose symptoms are primarily psychological. After all, they have received some training in this area from their agency. Yet it is difficult to know, in advance, whether a child's symptoms are a product of nature or nurture. Does your new adoptee belong in category 2, or category 3, or somewhere in between? Study the child's case history and make an educated guess.

If you adopt a child from category 3, either by intent or by accident, you will have to work hard to convince your physicians, teachers, therapists, friends, and relatives that your child's condition is "real". Once you find someone to help you treat the underlying disorder, the remaining psychological issues become tractable. In fact, some might disappear altogether -- symptoms of the primary disability. This is the light at the end of the tunnel -- the reward for being your child's persistent and uncompromising advocate.

For Disabled Parents

When I first approached my social worker, she asked if I might be interested in adopting a blind child, since I am similarly afflicted. "Your knowledge and experience puts you miles ahead in helping that child," she advised. This seemed reasonable, but after further reflection I decided I didn't want to adopt a child with a parallel handicap, exhibiting the same symptoms and limitations as my own. Picture two blind people feeling around on the floor for a lost item, or two wheelchairs facing a large bump in the road, whence neither can push the other across. I also ruled out antiparallel handicaps, with limitations so different that we could not function together. An obvious example is a deaf child, who could only communicate with me via finger spelling or interconnected keyboards. I finally decided to adopt a child with an orthogonal disability, having nothing whatsoever to do with my own, and I recommend this course of action for others. My handicap does not prevent me from helping my son overcome his severe ADHD, and once in a while he helps me locate my brailled Rubik's cube, which I tend to leave all over the house. As with any two people, interdependence helps cement our relationship.

References

1. The Minnesota Department of Human Services, statistics on waiting children,
October 1998.

2. The United State Census Bureau,
www.census.gov, 1998 estimates.

3. The Dave Thomas foundation maintains a national registry of "hard to place" children, including photographs, biographies, and broad disability classifications. Unfortunately this catalog only lists a small percentage (3%) of the waiting children in America. See an earlier article in this series for more on internet registries and the adoption process.

4. The Feingold diet, which eliminates petroleum-based additives and synthetic flavors, sometimes eases the symptoms of ADD and ADHD. See The Feingold Association of the United States for more information. Other diets, too numerous to list here, can also help.

5. The Explosive Child: A New Approach
By Ross W. Greene Ph.D. Harper Collins Publisher, 1998

6. It's Not All in Your Head
By Susan Swedo M.D. and Henrietta Leonard M.D.
Harper San Francisco, 1996
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