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What health challenges will my child encounter?

In our lifetime, the single most dramatic change effected by our community has been the astounding improvement of the health of people with Down syndrome. Through the caring innovation of medical professionals, the typical lifespan of an individual with Down syndrome now approaches 60 years of age, the average for all people. Equally important, advancements in cardiology, nutrition, the behavioral sciences and more have opened a high quality of life for people with Down syndrome.

For all health care needs, if you require immediate attention or in-person support, search the Global Down Syndrome Foundation’s Medical Clinic Listing for a clinic closest to you.

Basics of Proper Health Care
Quick Tips for Infant Health Care

By Laura Cifra-Bean, M.D., NDSC Professional Advisory Committee

All newborn care should begin with a thorough physical exam. If the clinician suspects the infant has Down syndrome, then a blood test to study the chromosomes is necessary for a definitive diagnosis. All babies who might have Down syndrome need a cardiac evaluation that includes an echocardiogram. There is a high rate of heart defects even if a heart murmur is not heard.

Pay special attention to feeding, weight loss and jaundice. Since abnormalities can occur, a blood count is needed. The routine state newborn screen will test for thyroid function.

Perform a hearing test soon after birth and have an ophthalmologist examine the baby’s eyes before six months of age.

Find information about local support groups, up-to-date references for information, and a referral for early intervention services.

Preventative Medical Care

All people benefit from preventive medical care for maintaining health and well-being. This is especially true for people with Down syndrome. Medical researcher Leonard reported that from 1980 to 1996 the survival rate for infants with Down syndrome increased from below 50 percent to more than 90 percent. A different study from Yang showed that in 1983, the median age of death for a person with Down syndrome was 25 years, which increased to 49 years by 1997. The increased infant survival and longer life span is in large part due to better medical care including surgical correction of congenital heart disease, aggressive infection prevention and treatment, and screening and treatment of medical conditions commonly associated with Down syndrome.

Children and adults with Down syndrome should have yearly physical exams. All routine immunizations should be obtained including an annual flu shot. Infants born prematurely or with congenital heart disease are candidates for the Synagis immunization, which protects against serious respiratory syncytial virus (RSV) infection during the winter season.

Down syndrome is associated with many medical conditions. Some have few recognizable symptoms, but may affect daily functioning or long-term health, so regular screening tests should be done. Hearing and vision screening are very important. Laboratory studies for thyroid disease, celiac disease and blood abnormalities are recommended.

Fortunately, very good guidelines for preventive medical care are readily available. The Down Syndrome Medical Interest Group (DSMIG) is a group of medical doctors who have a specific interest in Down syndrome. They created and regularly review and update health care guidelines that are available on our website, under the new parent package section. The American Academy of Pediatrics also has guidelines that are available on their site. Information about adult health care is available at the website for the Adult Down Syndrome Clinic at Advocate Lutheran General Hospital. Before the next doctor’s visit, download the guidelines to review them with the doctor. Good preventive medical care can make a big difference in the health and functioning of people with Down syndrome.

Is it Alzheimer’s?

“My 24-year-old son was diagnosed last week with Alzheimer’s disease. What do you think?”

By Brian Chicoine, M.D.
Editor’s note: Thanks to Dr. Chicoine, medical director at the Adult Down Syndrome Clinic at Lutheran General Hospital, for writing this article for Down Syndrome News.

This is an example of a phone call, email, or concern voiced at an office visit that we have been hearing more frequently. Is it Alzheimer’s disease? Do people with Down syndrome develop Alzheimer’s disease at that age?

Before answering these questions, it is helpful to go back and look at the information we know about Alzheimer’s disease in people with Down syndrome.

Alzheimer’s disease is a progressive neurological condition. Brain cells are destroyed, and the person experiences decline in function in multiple areas including memory, cognition, control of bodily functions and others. Microscopically, the brain tissue demonstrates changes called plaques and tangles.

Several years ago researchers did autopsy studies on a number of people with Down syndrome who had died for a variety of reasons. They concluded that essentially all people with Down syndrome develop plaques and tangles by the age of 35 or 40. Many people have concluded from this information that all people with Down syndrome over the age of 35 or 40 years develop clinical Alzheimer’s disease.

We have looked at the information we have gathered after serving over 2,500 adults with Down syndrome and have not found that all people with Down syndrome over the age of 35 or 40 develop Alzheimer’s disease. Some other researchers have published similar findings. In fact, the percentage of our patients who have developed Alzheimer’s disease is actually pretty similar to the general population. The difference in our data is that our patients, on average, develop Alzheimer’s disease 20 years earlier than people in the general population. Therefore, the rate of Alzheimer’s disease in our patients in their forties is similar to those without Down syndrome in their sixties, our patients in their fifties compare to others in their seventies, and sixties to eighties. This is not to say that these are small numbers. In the general population, the incidence of Alzheimer’s disease in people in their eighties is thought to be 40 percent.

While this information regarding populations of people is helpful, it doesn’t answer the question of whether an individual has Alzheimer’s disease. A thorough evaluation is needed. There is no one test that makes the diagnosis. The diagnosis is made by looking for a pattern of decline, looking for supporting information (such as findings on a CT scan), and “ruling out” other causes of decline.

There are many reasons someone may have a decline in skills. Some of the causes are not reversible. Unfortunately, as of now, Alzheimer’s disease is one of the non-reversible causes. However, many of the other causes are reversible and the evaluation must include an assessment for these.

The evaluation includes an assessment for such things as:

  • Sleep apnea
  • Hypothyroidism
  • Vitamin B12 deficiency
  • Depression

There are many other possibilities as well.

Particularly in younger people who have declined, one of the things we have seen is a person becoming overwhelmed. This is often a case of expectations exceeding ability. We have seen several people who had fine skills in self-care, tasks in the home, and tasks in the work place. Unfortunately, some of these folks have a difficult time organizing their time or dealing with fluctuations in their schedules.

Others have a difficult time knowing how to use their “down time” or recreation time. This occurs even when the person has the skill to do all the activities, but may lack the ability to “pull it together.” This is where the expectations exceed the actual ability. Before the decline, the person appeared to function so well because of the ability to do so many tasks, but not as independently as was expected. When the expectations are too great, in a sense, the person “shuts down.”

In Alzheimer’s disease, the symptoms we typically see include the following:

  • Memory impairment
  • Decline in cognitive skills
  • Incontinence of urine and/or stool
  • Gait disturbance
  • Personality or psychological changes
  • Depressed mood
  • Aggressiveness
  • Paranoia
  • Compulsiveness
  • Loss of interest in activities
  • Seizures or myoclonic jerks
  • Swallowing dysfunction
  • Sleep changes (day-night reversal, daytime fatigue)
  • Altered appetite and thirst

These symptoms develop over time and not all of them are present in the early stages.

Does the 24-year-old young man mentioned at the beginning of the article have Alzheimer’s disease? It certainly would not be the first thing I would consider. In fact, the youngest person we diagnosed with Down syndrome was about 35 years old when his symptoms began. Alzheimer’s disease is lower on our list of diagnostic possibilities for any of our younger patients who present with a decline in skills. While there may be some people who fall outside the typical age range, it is more likely that there is an alternative explanation. Careful assessment, support, observation over time, and treatment of any potentially reversible conditions will often help make the diagnosis more clear and lead to improvement in those individuals who don’t have Alzheimer’s disease.

Down Syndrome and Alzheimer’s

Management of Cardiac Disease

You Never Know

By John R. Lane, M.D., F.A.C.C., Director, Adult Congenital Heart Service, Akron Children’s Hospital, Akron, Ohio, 2005

Down syndrome is commonly associated with congenital heart disease. The incidence of congenital heart disease in people with Down syndrome has been estimated to be 40 to 50 percent.(1,2) Most congenital cardiac lesions are amenable to surgical or non-surgical repair. While some have advocated in the past that the cardiac defects in people with Down syndrome should not be repaired, reports have shown outcome comparable to individuals without Down syndrome.(3) The improvement in life expectancy and quality of life afforded by repairing heart defects demands an aggressive approach to the early surgical management in individuals with Down syndrome. After repair or palliation of congenital heart defects, long-term follow-up and management is imperative.

The most common congenital cardiac defect in people with Down syndrome is the atrioventricular (AV) canal defect (also known as an AV septal defect or endocardial cushion defect). Next most common are ventricular septal defects. Other defects encountered in people with Down syndrome include atrial septal defects and tetralogy of Fallot.(4) The anatomy of the normal heart and of theses defects will be explored further.

The normal human heart consists of four chambers. The upper chambers are thin-walled and receive blood from other parts of the body. The right atrium receives blood returning through veins from the body. The left atrium receives blood through veins returning from the lungs. The two lower chambers of the heart, the ventricles, are muscular and pump blood to other parts of the body. The right ventricle pumps blood to the lungs. Blood flowing through the lungs picks up and carries oxygen, and then returns back to the heart. The left ventricle pumps blood to the body, delivering oxygen and nutrients to all parts of the body. The wall separating the two ventricles is the ventricular septum. The wall separating the two atria is the atrial septum. There are two valves between the atria and ventricles. The tricuspid valve is between the right atrium and the right ventricle. The mitral valve lies between the left atrium and the left ventricle. The valves normally allow the forward flow of blood while preventing backward flow. The pulmonic valve, located between the right ventricle and the main pulmonary artery, allows blood to flow forward into the lungs and prevents back flow into the right ventricle. The aortic valve allows forward flow of blood out of the left ventricle into the aorta, which carries the blood out to the body.

An AV canal defect is a frequently encountered congenital heart defect, both in patients with and without Down syndrome. AV canal defects involve abnormalities in the atrial septum close to the atrioventricular (mitral and tricuspid) valves. The atrioventricular (AV) valves are abnormal to varying degrees ranging from a cleft or gap in the mitral valve to severe malformation of the valves in which there is a single common valve entering both ventricles. There may also be a defect in the ventricular septum (VSD). There may be any combination of these features; for instance, there can be a primum defect with a cleft mitral valve and no VSD, or there may be a large primum defect with a large VSD and a common AV valve. The pattern of the defects dictates the type of surgical repair and the timing of that repair. The presence of a large ventricular septal defect as part of the overall cardiac malformation requires early surgery within the first few months of life to prevent permanent damage to the pulmonary arteries. This damaging process caused by excessive blood flow into the lungs is known as pulmonary vascular disease. On the other hand, when there is only a primum atrial septal defect without the ventricular septal defect component, surgery can be safely performed later.

Ventricular septal defects (VSDs) may also occur apart from AV canal defects. The defect is described based on its location; membranous VSDs are high in the ventricular septum close to the aortic valve, and muscular VSDs are in the area of the ventricular septum that is highly muscular. There are also other varieties of VSD. Large VSDs, just as in individuals with an AV canal defect, can cause pulmonary vascular disease and typically require surgical closure. Small VSDs often don’t cause problems and can be followed. Small VSDs frequently become smaller over time and may undergo spontaneous closure.

Tetralogy of Fallot consists of a VSD, pulmonic stenosis (obstruction to blood flow into the lungs), aortic override (the aorta is deviated to the right and hangs over the right ventricle) and right ventricular hypertrophy (abnormally increased thickness of the muscle of the right ventricle). Tetralogy of Fallot requires surgical repair. Isolated atrial septal defects (ASDs) may require closure, but can be followed if they are small. ASDs can be closed non-surgically; there are several devices used to close ASDs via delivery through a catheter entering through a small puncture in a vein. The Amplatzer septal occluder is currently the only device approved by the FDA for ASD closure. A PDA is a connection between the aorta and the pulmonary artery. This connection is normal prior to birth and typically closes shortly after birth. If it does not close, it may cause some of the problems seen with other types of defects like the VSD. PDAs can be surgically closed or can be closed non-surgically with a catheter procedure.

After the repair of a congenital heart defect, patients generally do very well. Surgical outcomes in children with Down syndrome appear comparable to children without Down syndrome.(4) Surgical repair does not imply the heart has been made completely normal. There may be residual abnormalities not fully corrected, or problems can develop after surgery or as a consequence of surgery. Especially important in the discussion of AV canal defects is mitral regurgitation. Mitral regurgitation (or mitral insufficiency) refers to the leakage of the mitral valve allowing blood to leak back into the left atrium when the ventricles contract. There may be mitral regurgitation if the mitral valve is deficient in its structure. Mitral regurgitation may also develop after surgical repairs. Mitral regurgitation can lead to overwork of the left ventricle, enlargement of the left atrium, heart rhythm abnormalities, and heart failure. It is therefore necessary to evaluate the heart on a regular basis to make sure mitral regurgitation is not developing or existing regurgitation is not worsening. Mitral regurgitation can be treated with medications. In some cases, surgical re-repair of the valve may be necessary. Valves other than the mitral valve can become regurgitant as well.

Obstruction to blood flow out of the left ventricle can develop related to the unique anatomy of the ventricles in an AV canal defect. This is known as subaortic stenosis. Subaortic stenosis can also develop in individuals with a VSD (unrepaired or post repair) or it can occur associated with other types of disease involving the left ventricle and left-sided heart structures. Subaortic stenosis may also be an isolated defect. It can be followed if it is mild, but may require operation if it becomes significant. Subaortic stenosis can lead to excessive pressure work on the left ventricle, abnormal thickening and stiffness of the left ventricle, distortion and dysfunction of the aortic valve, and ultimately to failure of the left ventricle. The treatment for subaortic stenosis is surgical and usually very effective.

Stenosis can occur in other areas, as well. There can be blood vessel stenosis or valve stenosis. Excellent therapies exist for these problems. Blood vessel stenosis is frequently addressed by dilation with a balloon catheter (balloon angioplasty). In other situations, surgical reconstruction is necessary. Valve stenosis likewise can be treated with balloon catheter dilation; surgical repair or replacement of heart valves is now common, effective and safe.
The heart muscle may become weak. Myocardial (heart muscle) dysfunction can be positively impacted by addressing the problem that predisposed its development in the first place (such as fixing a stenotic or regurgitant valve, fixing arterial stenosis, or closing a septal defect). Medications may also improve myocardial dysfunction.

Cardiac arrhythmias (abnormal heart rhythms) may occur for a variety of reasons. Some individuals are born with abnormal electrical circuits within the heart that can lead to arrhythmias. Chambers of the heart can become stretched or enlarged predisposing the cardiac tissue to have abnormal electric responses. Repair of the heart can result in internal scarring of the heart that creates abnormal electrical circuits. Addressing underlying abnormalities that predisposed the arrhythmia development in the first place helps to control arrhythmias. Medication may also suppress arrhythmias. Catheter procedures can treat and cure arrhythmias. Sophisticated technologies are available to assist in other types of arrhythmia. Implanted pacemaker devices can overcome inadequate electrical conduction in the heart. An implanted cardiac defibrillator (ICD) is designed to sense abnormal fast heart rates and deliver a shock to the heart to interrupt life-threatening arrhythmias.

Individuals with Down syndrome are also at risk for the development of cardiac abnormality even if the heart is normal at birth. Mitral valve prolapse (MVP) may develop.(5) MVP is an abnormal bowing of the mitral valve into the left atrium when the valve closes. This can lead to mitral regurgitation. In addition, aortic valve regurgitation is seen in individuals with Down syndrome.(5) Both of these abnormalities should be recognized early so appropriate measures can be taken to minimize any negative effects on the heart. Screening for MVP and aortic regurgitation has been advocated to be part of the routine medical care of adults with Down syndrome.(6)

Follow-up needs to be obtained at a center that can provide a wide range of congenital cardiac services, including diagnostic imaging, congenital cardiac catheterization and catheter intervention, arrhythmia management, and congenital cardiac surgery. Adult congenital heart centers are becoming a reality to address this very unique need in adult individuals with Down syndrome and in individuals with all types of congenital heart disease.

To summarize, Down syndrome is highly associated with cardiac defects with 40 to 50 percent of children born with Down syndrome having a congenital heart defect. Some cardiac defects don’t cause any problems or resolve by themselves. Other types of defects require surgical repair. The timing of the repair depends on the defect and the effects it is having on the heart. Surgical repair is effective and usually carries a low risk. Despite having had a repair, the heart is rarely without some residual problem or propensity to go on to develop new problems; therefore, individuals require appropriate cardiac follow-up. Good therapies for problems and complications exist and are tailored for the individual’s needs. Follow-up needs to extend into adulthood. Follow-up of congenital defects should be done by a cardiologist and a center with special expertise in the management of congenital heart problems and individuals with Down syndrome.

References

1. Rowe RD, Uchida IA. Cardiac malformation in mongolism. Am J Med 1961; 31: 726-735.
2. Frid C, Drott P, Lundell B, Rasmussen F, Anneren G. Mortality in Down’s syndrome in relation to congenital malformations. J. Intellectual Disability Research 1999; 43:234-241.
3. Vet TW, Ottenkamp J. Correctional of atrioventricular septal defect. Results influenced by Down syndrome? Am J Dis Child 1989; 143(11):1361-5.
4. Tendon R, Edwards JE. Cardiac malformations associated with Down’s syndrome. Circ 1973; 47(6):1349-55.
5. Goldhaber SZ, Brown WD, Sutton MG. High frequency of mitral valve prolapse and aortic regurgitation among asymptomatic adults with Down’s syndrome. JAMA 1987; 258(13):1793-5.
6. Committee Report. Guidelines for optimal medical management of persons with Down syndrome. Acta Paediatr 1995; 84:823-7.

Self-Talk in Adults with Down Syndrome

“Self-Talk” in Adults with Down Syndrome

By Dennis McGuire, Ph.D., Brian A. Chicoine, M.D., and Elaine Greenbaum, Ph.D, 2005.
Editor’s note: This article was originally printed in 1997 in Disability Solutions, Vol. 2, Issue 2, and excerpts are reprinted here with permission.

Do you talk to yourself? We all do at different times and in various situations. At the Adult Down Syndrome Center of Advocate Lutheran General Hospital, we have heard repeatedly that adults with Down syndrome talk to themselves. Sometimes, the reports from parents and caregivers reflect deep concern that this behavior is “not normal” and symptomatic of severe psychological problems.

Preventing misinterpretation of self-talk as a sign of psychosis in adults with Down syndrome is a major motivation for this article. Too often, we believe, these conversations with self or imaginary companions have been equated with hearing of voices and treated with anti-psychotic medications (such as Haldol®, Mellaril®, or Risperdal®). Since it is extremely difficult to evaluate the thought processes of adults with cognitive impairments and limited verbal skills, we urge a very cautious approach in interpreting and treating what seems to be a common and at times very helpful coping behavior for adults with Down syndrome.

The Adult Down Syndrome Center was developed to address the health and psycho-social needs of adults with Down syndrome. Our records indicate that 81 percent of adults seen engage in conversations with themselves or imaginary companions.

Helpful self-talk

Families and caregivers should understand that self-talk is not only “normal” but also useful. Self-talk plays an essential role in the cognitive development of children. Self-talk helps children coordinate their actions and thoughts and seems to be an important tool for learning new skills and higher level thinking. Three-year-old Suzy says to herself: “This red piece goes in the round hole.” Then Suzy puts the red piece into the round hole of the puzzle.

We suspect that self-talk serves the same useful purpose of directing behavior for adults with Down syndrome. Consider the case of 22-year-old “Sam” (not his real name). His mother reported the following scene. She asks Sam to attend a family function on a Sunday afternoon. Sam’s regular routine is to go to the movies on Sunday afternoons. Sam tells his mother he will not go with the family. Then the mother asks Sam to think it over. Sam storms off to his room and slams the door. His mother overhears this dialogue:

“You should go with your family, Sam.”
“But I want to go to the movies.”
“Listen to your Mom!”
“But Sunday is my movie day.”
“You can go next Sunday”

Sam’s mother said he went to the family function with the proviso that he could go to the movies the next Sunday. Sam may have been talking to an imaginary person or arguing with himself, but Sam clearly managed to cope with a situation not to his liking.

In children without identified learning problems, the use of self-talk is progressively internalized with age. Moreover, children with higher intellectual abilities seem to internalize their self-talk earlier. As self-talk is transformed into higher-level thinking, it becomes abbreviated and the child begins to think rather than say the directions for his or her behavior. Thus, the intellectual and speech difficulties of adults with Down syndrome may contribute to the high prevalence of audible self-talk reported to us at the Center.

In general, the functions of self-talk among adults are not as well-researched or understood. Common experience suggests that adults continue to talk to themselves out loud when they are alone and confronting new or difficult tasks. Though the occurrence may be much less frequent, the uses of adults’ self-talk seem consistent with the findings about children. Adults talk to themselves to direct their behavior and learn new skills. Because adults are more sensitive to social context and may not want to overhear these private conversations, their self-talk is observed less frequently.

Adults with Down syndrome show some sensitivity about the private nature of their self-talk. Like Sam in the example above, parents and caregivers report that self-talk often occurs behind closed doors or in settings where the adults think they are alone. Having trouble judging what is supposed to be private and what is considered “socially appropriate” also may contribute to the high prevalence of easily observable self-talk among the patients visiting the Center.

In the general population, self-talk among older persons is frequently notable and, usually, easily accepted, just as it is with children. Among the elderly, social isolation and the increasing difficulty of most tasks of daily living may be important explanations for this greater frequency of self-talk. For adults with Down syndrome, these explanations also make sense. Adults with Down syndrome are at greater risk for social isolation and the challenges of daily living can be daunting.

Additionally, we have found that many adults with Down syndrome rely on self-talk to vent feelings such as sadness or frustration. They think out loud in order to process daily life events. This is because their speech or cognitive impairments inhibit communication. In fact, caregivers frequently note that the amount and intensity of the self-talk reflects the number and emotional intensity of the daily life events experienced by the individuals with Down syndrome.

For children, the elderly, and adults with Down syndrome, self-talk may be the only entertainment available when they are alone for long periods of time. For example, a mother reported that her daughter “Mary” spent hours in her room talking to her “fantasy friends” after they moved to a new neighborhood. Once Mary became more involved in social and work activities in her new neighborhood, she did not have the time or the need to talk to her imaginary friends as often.

Thus, the fact that adults with Down syndrome use self-talk to cope, to vent, and to entertain themselves should not be viewed as a medical problem or mental illness. Indeed, self-talk may be one of the few tools available to adults with Down syndrome for asserting control over their lives and improving their sense of well-being.

When to worry

The distinction between helpful and worrisome self-talk is not easy to cast in stone. In some cases, even very loud and threatening self-talk can be harmless. This use for self-talk by the adult with Down syndrome may not be that different from someone who rarely swears but screams out a four-letter word when hitting her thumb with a hammer. Such outbursts may simply be an immediate, almost reflexive outlet for some of life’s frustrations.

Our best advice about when to worry is to listen carefully for changes in the frequency and context of the self-talk. When self-talk becomes dominated by remarks of self-disparagement and self-devaluation, intervention may be warranted. For example, it may be quite harmless when “Jenny” yells, “I am a dummy,” once, right after her failure to bake a cake from scratch. However, if Jenny begins to tell herself over and over, “I am a dummy and can’t do anything right,” it may be time to worry and to do something.

A marked increase in the frequency and a change in tone of the self-talk also may signal a developing problem. For example, a caregiver reported that “Bob” had begun to talk to himself more frequently and not just in his room at the group home. Bob seemed to lose interest in his housemates and spent more time in these conversations with himself. Bob talked to himself, sometimes loudly and in a threatening manner, at the bus stop, at the workshop, and at the group home. Bob was diagnosed as experiencing a severe form of depression. Over an extended period of time, Bob began to respond to an anti-depressant and to his participation in a counseling group.

In another case, “Jim” (like Bob) showed a dramatic increase in self-talk. Jim refused to go to his workshop and to participate in the social activities that he once enjoyed. It turned out that Jim’s change in behavior was not due to depression. Instead, Jim’s family and staff at his workshop discovered that Jim was being intimidated and harassed by a new co-worker. With the removal of the bully from his workshop, Jim gradually regained his sense of trust in the safety of the workshop. His self-talk and interest in participating in activities returned to earlier levels.

Further study of the content, context, tone, and frequency of the self-talk of adults with Down syndrome may provide more insight into their private inner worlds. What we have observed and heard from family and caregivers suggests that self-talk is an important coping tool and only rarely should it be considered a symptom of severe mental illness or psychosis. A dramatic change in self-talk may indicate a mental health or situational problem. Despite the odd or disturbing nature of the self-talk, our experience at the Center indicates that self-talk allows adults with Down syndrome to problem-solve, to vent their feelings, to entertain themselves, and to process the events of their daily lives.

Difficult Behaviors

When Your Child Engages in Difficult Behavior

by David Pitonyak, Ph.D., Blacksburg, VA
Editor’s note: David Pitonyak is a nationally-recognized expert and popular speaker on the subject of Positive Behavior Support. He gave permission to reprint this article. Check out www.dimagine.com to see more of his work.

Several years ago I was asked to speak to a group of parents in Vermont. The title of the presentation was “Supporting Children with Special Needs.” Five minutes into my talk, a parent stood up and interrupted me. She insisted that I stop referring to her daughter as someone with “special needs” (I had been using the term a lot).

“My daughter does not have special needs,” she said. “My daughter has the same needs as anyone else. She has a need to live at home with her family. She has the need for a good education, friends, fun and a supportive family. Sometimes you professionals – in your efforts to provide special services to people – forget the ordinary, everyday things that people need.”

She must have known that I was embarrassed. I’m sure I turned 80 shades of red as I muttered through the rest of my presentation. After it was over, she put her hand on my shoulder and said, “You’ll be fine.”

As awkward as I felt about the evening, I felt grateful too. I learned one of the most important lessons I have ever learned as a professional. Sometimes, in our efforts to provide “special” services to people, we often forget the ordinary things people need everyday: friends, family, interesting and fun things to do, safety and security, and a chance to make a contribution to the larger community. (In short, a chance to belong).

What follows are 10 things to remember if your child, because he or she exhibits difficult behaviors, is at risk of not belonging. If you don’t have the time or energy to read one more word, remember these two ideas:

Taking care of yourself is one of the most important things you can do. If you don’t, it will be very difficult to take care of anyone else.

Remember that your child’s problem behavior(s) has meaning. Finding out what your child needs is the first step in supporting your child, and the people who love your child, to change.

1. Be Mom and Dad first
Chris Heimerl writes, “Of all the hats you must wear: advocate, care provider, therapist, teacher, the most important is Mom and Dad. Your love is the most powerful treatment any of us can imagine. If all the other stuff you have to do first interferes with being a parent, stop. Someone else can do some of the other necessary stuff, but nobody else can be Mom and Dad.”

2. Think of challenging behaviors as “messages”
Difficult behaviors result from unmet needs. In a sense, difficult behaviors are “messages” which can tell us important things about your child and the quality of his or her life. Here are some examples of the kinds of “messages” your child may be conveying with their behavior:

  • “I’m lonely.” — Michael’s brother was invited over to a friend’s house to watch television. Michael is never invited to the homes of children because he goes to a “special” school 35 miles from his neighborhood. Michael has no friends to play with.
  • “I’m bored.” — Roberta’s sister is a doctor at the local hospital. She has her own house and is her parents’ pride and joy. Roberta works all day at a sheltered workshop where she packages plastic forks and knives. She lives at home and is tired of packaging. She wants to get a real job. Roberta’s case manager says she daydreams too much.
  • “I have no power.” — John likes to sit down on the sidewalk when the bus arrives to take him to school. His mother becomes very angry and tells him that there will be no dessert when he gets home. John laughs when the bus driver threatens him with time out.
  • “I don’t feel safe.” — Conrad uses a wheelchair and is not able to defend himself from attacks. One of the people in his day program can be aggressive and Conrad worries that he will be hurt.
  • “You don’t value me.” — Gloria has a “severe reputation.” People from all over the state have heard stories about her terrible tantrums. No one knows that she is a very caring person who worries about her father’s health. The only part of Gloria people pay attention to is her problem behaviors.
  • “I don’t know how to tell you what I need.” — June did not know how to use words or sign to let other people know what she was thinking. She lives at home with her parents where she has learned that the best way to be “seen” is to bite your arms. It hurts, but it is the only thing that “works.”
  • “My ears hurt.” — Walter hit his ears with his fists. His job coach wanted it to stop and wrote a behavior plan for “not hitting.” Weeks later, at a scheduled doctor’s appointment, it was learned that Walter had a low-grade ear infection. Antibiotics cleared up the infection and Walter stopped hitting his ears.

Obviously there are many needs that your child might be expressing through his or her behavior. A single behavior can “mean” many things. The important point is that difficult behaviors do not occur by accident or because someone has a disability. Difficult behaviors are expressions of real and legitimate needs. All behavior, even if it is self-destructive, is “meaning-full.”

Ask yourself, “Is my vision for my child similar to the vision I have for my other children (or the vision other parents have for their children)? When I think about what my child needs, do I focus on disability-related needs or do I think about things like friendships, fun, a sense of belonging?”

3. Learn about person-centered planning
In the book, A Little Book About Person-Centered Planning, Connie Lyle O’Brien, John O’Brien, and Beth Mount describe the powerful differences between traditional approaches and person-centered planning. Unlike traditional approaches to planning, which ask questions like, “What’s wrong with you?” and “How can we fix you?” person-centered planning focuses on questions like, “What are your capacities and gifts and what supports do you need to express them?” and “What works well for you and what does not?” and “What are your visions and dreams of a brighter future and who will help you move toward that future?” Describing the roots of person-centered planning, Lyle O’Brien, O’Brien, and Mount write (1998): “Person-centered planning did not ignore disability, it simply shifted the emphasis to a search for capacity in the person, among the person’s friends and family, in the community, and among service workers. A person’s difficulties were not relevant to the process until how the person wanted to live was clear. Then it was necessary to imagine, and take steps to implement creative answers to this key question, “What particular assistance do you need because of your specific limitations (not labels) in order to pursue the life that we have envisioned together?”

4. Don’t assume anything
It is easy to make the mistake of underestimating your child’s potential because of his or her labels or because he has failed to acquire certain skills. This is a tragic mistake. I have worked in the field for 15 years and I am less confident in my ability to predict how much a person understands or how much he will be able to accomplish with every passing day. For example, the new AAMR definition of mental retardation states that an individual’s success or failure in life is determined by the quality of his supports rather than a missing gene or “faulty” body chemistry. In short, professionals like me used to doom people because of an arbitrary diagnosis. What some of us have finally woken up to is the fact that nothing dooms people more than a lack of support.

You can speak volumes to your child about his self-worth by always including your child in conversations and explaining things as clearly as you can. Even if you doubt your child’s ability to understand your words, know that at the very least your child will understand the tone of your voice; make sure it reflects dignity and respect as often as you can. Never speak about your child as if he was not in the room.

5. Remember that relationships can make all the difference in the world
Loneliness may be the most significant disability your child will ever face. Many people with disabilities, young and old, live lives of extraordinary isolation. Some depend entirely upon their families for support. A brother or sister or mom or dad is the only source of company. Friends are often absent altogether. All too often, the only relationships people have are with paid staff. Although staff can offer a great deal, they change jobs frequently or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.

Involve your child with other children at a young age (children with and without disabilities). It is easier to learn about the importance of relationships when their importance has been clear over a lifetime.

It’s easier to be a friend when you have friends that know something about friendship. Insist that your child be included in regular classrooms. Inclusion is a powerful way to build relationships.

And don’t let anyone fool you into thinking that inclusion of children with disabilities in regular classrooms is a bad idea. Doing it poorly is a bad idea. Doing it well is good for all children.

Make a commitment to learn more about personal futures planning and other person-centered approaches to planning for your child’s future. Do it today!

6. Help your child to have more fun
Fun is a powerful antidote to problem behaviors. Count the number of things your child enjoys, the number of places she likes to go. Compare this to the number of things other children enjoy, the number of places other children go. Ask yourself, “Is my child having fun? Is she experiencing enough joy? Is this an interesting life?” People with substantial disabilities often live in ghettos of reward. Indeed, it is often this poverty of reward, not a lack of skills, which keeps people separate from other community members.

Sadly, many people with disabilities are put on reward schedules for good behavior. The very few things that they enjoy are used contingently to reinforce compliance (talk about spoiling a good thing).

Help your child to add on to her list of interesting (and really fun) things to do.

Spend time in regular community places where people hang out. Make fun a goal.

7. Take care of yourself, take care of your partner, and join with other parents to support each other
Many parents suspend their own dreams and aspirations the day their child is born. They adopt an identity of “parent of a child with a disability,” putting their own needs on hold like a videotape that can resume at the touch of a button. Many parents feel isolated because their child has a disability. They feel obligated to suspend their relationships with other people because the work of parenting their child seems all consuming, or they feel that other people will have difficulty understanding their child’s disability. There is a deep fear of rejection. As one parent put it, “It is better to be alone than to feel my child’s hurt when he is rejected.”

Chris Heimerl writes: “Take care of yourself, take care of your partner and join with other parents to take care of each other. Before you became a parent you were a partner in a relationship that had enough love, nurturing, and respect to want kids. Don’t lose sight of that relationship. Before you were a partner, you were a person that someone found attractive, vital and loving. Don’t lose sight of that person.”

Get connected and stay connected with parents of children with and without disabilities. Join organizations made up of parents who fight for the inclusion of their children in every aspect of community life.

Remember that the vast majority of innovations that have taken place in our service delivery system happen because parents and their children have become dissatisfied with “what is.” If you join forces with other parents you can make a significant difference in your child’s life.

Learn about the laws and regulations that help and hurt your child’s inclusion in community life. Speak up whenever your child’s future is at stake. Above all, be respectful of people who disagree with you while remaining steadfast about your beliefs.

8. Help your child to make a contribution to others
Lou Brown has said that the least amount of difference between a child with disabilities and a child without disabilities may be the day that they are born, naked to the world. But then, because of the way our society separates the child with disabilities into “special services,” he or she becomes “different.” Perhaps the most devastating effect of this separation is that the child with a disability does not learn what he or she can contribute to others. In a sad kind of way, the child becomes the “needy one.” Being needy – all the time – is dispiriting. Making a contribution to others – to your family, friends, and the larger community – is good for you. It’s good for the soul. It’s good for the heart, the brain…it’s probably a biological imperative to give. One day we may learn that the world actually revolves on its axis not because of the laws of physics, but because of the love we give to others. As John Bradshaw writes, ” Our identity is the difference about us that makes a difference.”

The real danger, of course, is that if enough people begin to think of you as “needy,” you will begin to believe it too.
We all need to be needed.

It is my experience that people with difficult behaviors especially need to be needed.

Help your child to find a way to make a contribution to others. Start young because learning to give is a lifelong endeavor. Help your child to learn how to support friends (e.g., an invitation to a sleepover, birthday cards, learning to ask, “How are you doing?” or “What’s new?”). Things as simple as helping with household chores or helping out at church can teach your child that she can make a contribution.

9. Instead of ultimatums, give choices
If it is 9 p.m. and you are sitting down to read these words, chances are good that you have made hundreds, if not thousands, of choices since 7 a.m. You may have decided to wear blue socks when getting dressed. You may have decided not to wear a heavy sweater, hoping the warmer weather would prevail. You may have decided to skip breakfast, buy unleaded gas, work on a report, clean the garage, take a hike, watch a football game, etc. You may have made more monumental decisions: purchased a house, stopped drinking, decided to re-marry, purchased a major appliance, agreed to surgery, etc. The point is, we humans are decision-making machines.

Many people with disabilities have little or no control over their own lives. Many of the decisions that we take for granted – such as what to wear and whether or not to have a cup of coffee – are made by other people. How would you feel if you lived such a life?

The mistake we make with children and adults with disabilities is we assume that because they don’t always make good decisions about some things they ought not to make decisions about anything.

Always remember that our tendency is to become directive and negative when our children are engaging in problem behaviors. We tend to take control when our children are out of control. Ironically, our children may need more control not less when their behavior is disturbing.

Choice is a powerful alternative to punishment. If your child’s behavior challenges you, help him or her to find more desirable ways to express the needs underlying his or her behaviors. Instead of ultimatums, give choices (e.g., “Bill, I know you’re upset. What would help? Would you like to go for a walk? Or take a ride? That will give you a chance to calm down and then we can talk about what you need?”).

Allow your child to make decisions throughout the day. If he has trouble making choices, find a way to help. Make sure there are at least three desirable outcomes to choose from. As Norman Kunc has said, 1 option = tyranny; 2 options = a dilemma; 3 or more options = a real choice.

Make sure your child is invited to his or her IEP or IHP meetings. It is important that he or she have input whenever possible. This is especially true when a problem behavior is being discussed (imagine how you would feel if people were trying to change your behavior and never stopped to ask you what you think). It is also important that your child be able to say “no.”

If your child does not speak, ask anyway. Suggest that he find a nonverbal way of letting you know what’s needed.
Don’t assume that helping your child to have more choices means letting him do whatever he wishes. Limit setting is an important and fair part of any relationship. The real question is who is setting the limits and why. If limits are imposed upon children without their input, and if the limits are part and parcel of a life in which your child is powerless, even your best advice may be interpreted as one more statement of, “Do it my way or else.”

Expect a general disregard for advice when the person receiving the advice is never heard. Rebellion may be a healthy strategy for someone who is out of power. As Tom Harris put it, “It’s better to have bad breath than no breath at all.”

[Author’s note: I heard the expression, “Instead of ultimatums give choices,” years ago, but I’ll be darned if I remember where. My apologies to the author of this succinct phrase, wherever you are…]

10. Establish a working relationship with a good primary health care professional
Mark Durand has said, “People tend to get immature when they don’t feel well. “How often have you experienced a general decline in your mood, your ability to empathize with the needs of others, when you don’t feel well? When we are sick, we are not ourselves.

Many people who exhibit difficult behaviors do so because they don’t feel well. The sudden appearance of behavior problems may be a signal that your child does not feel well. Illnesses as common as a cold or earache can result in behaviors as inconsequential as grumpiness or as serious as head banging.

It is important to establish a working relationship with a good primary health care physician. Although this is easier said than done, your child, especially if he has difficulty communicating, will need a doctor who can help him to stay healthy and well.

Remember that physicians, like many other people who grew up in our “separate” society do not always understand (and may even fear) a person with substantial disabilities.

Don’t be afraid of telling your child’s doctor that you don’t understand a recommendation or finding. It is important to get a clear and straightforward answer to all of your questions.

Remember that it is important to go beyond a concept of health as the absence of a disease or illness. “Feeling well” and “being healthy” involves everything from a balanced diet to a good night’s sleep. Help your child to learn about “wellness.”

References
Lyle O’Brien, C., O’Brien, J. & Mount, B. (1998) “Person-Centered Planning has Arrived…or Has It?” In O’Brien, J. & Lyle O’Brien, C. (Eds). A Little Book About Person-Centered Planning. Toronto: Inclusion Press
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