MENTAL ILLNESS AND ITS CONSEQUENCES FOR A FAMILY

By: T. Berry Brazelton, M.D., and Joshua Sparrow, M.D.

Q. Four years ago my son had a nervous breakdown. He has since been diagnosed with bipolar disorder. His wife divorced him because he became physically abusive during an argument. They have a 5-year-old son, who has not been allowed to see his dad for the last three years, due to a restraining order by the mother, which included my grandson (although he has never been abused). My former daughter-in-law is financially stable and has a good lawyer, while my son is still barely able to support himself and cannot afford a lawyer.

My grandson is restless, angry and is already having problems in kindergarten. He can’t sit still and pay attention. He yells at his mother and does exactly what he wants to do, like going to bed at 9:30 on a school night. She loves him very much and wants him to have everything he wants in life. I feel her behavior is causing him to be insecure, and his actions are a call for help.

I tried to continue to be involved in his life, but have not seen him as much as I did (my husband as well) because his mother always makes it difficult by making excuses not to schedule visits — not enough notice, he’s going to a friend’s party, etc. I have told her how important it is to keep our relationship. She always says she understands and wants him to have a relationship with us, but does nothing to help us.

We have told her that we feel it’s vital to our grandson’s mental health that he see his father, and have offered to supervise any and all visits so our grandson would feel safe and be in a familiar setting. Nothing we say or do is working. We are sick about this and honestly feel the stress and heartache is wearing us down to the point that maybe we would all be better off if we gave in to her and stopped seeing him and stopped trying to reunite him and his father.

She says she doesn’t feel her son is safe with us (although when they were married he was with us at least once a week) and she says our son is too unstable and hasn’t changed enough that she wants him to see their son. I have told her he can’t change — this is a mental health problem that’s not going away (although he is getting help). I have told her all we want is for their son to have the best life possible, to be included as part of our family and to have a relationship with his father. She can’t see that her son is suffering silently and now overtly. What more can we do?

A. You are all suffering, and you’d all like it to stop. So you try to understand what is causing the pain and the problems. Inevitably, you end up blaming yourselves, and each other. But finding fault just leads to bitterness, misunderstanding and more pain. Deep down you all know that if anything is to blame, it is your son’s serious mental illness. That, of course, is no one’s fault.

If you could all forgive yourselves and each other, you might have a better chance of developing the kind of communication and teamwork that you know you all need. (When there are tough decisions to make that threaten to pit you against each other, a neutral third party such as a court appointed guardian ad litem for the child who would independently represent the child’s best interest might also help settle down the understandable tensions.)

Of course it would be best for your grandson for family ties to be preserved and strengthened, even while squarely facing whatever limits there must be to your son’s interactions with his son when he is unstable. Repairing your relationship with your ex-daughter-in-law will have to come first, before any hope of influencing your grandson’s life more directly.

You have been so strong and brave to face the realities of your son’s illness. No wonder you may need your own time to heal before you can understand his ex-wife’s reactions. Until then, see if you can hold off on attributing the child’s “bad” behavior to her parenting. She’s unlikely to feel that he’ll be safe with you as long as she has to worry that you are judging her critically, which may subtly undermine the authority she needs as a parent.

Of course the boy needs limits, and he may need more limits than he is getting. But the sadness and fear that sets in when a marriage ends often drains parents’ ability to tune into their children’s needs until they’ve had a chance to heal. Can you help her to heal as a critical first step to helping your grandson? She might feel that you could understand her side better if you could consider the possibility that her boy might be hard to handle for a number of reasons beyond late bedtimes and lack of limits.

How could he not be thrown off by his father’s violent behavior (even if it was never directed at him), the divorce and all of the family’s stormy feelings that have resulted? Or he might be showing early signs of threats to his own mental health, especially since these are sometimes transmitted genetically.

You sound big-hearted and generous, as if you can acknowledge his mother’s challenges. Can you take it a step further to let her know you can see and appreciate what she is doing right by her boy? She’s been violated and traumatized. So have you — by your son’s terrible illness. She’s lost her love, marriage and dreams for her future with her life’s partner.

You may feel that you’ve lost your son — at least temporarily — to the delusions and distortions of acute manic episodes. Are your feelings about this something you can share with her? Only once she believes that you understand what she’s been through, that you know she has the child’s best interests at heart, that you will support her as a parent rather than blame her, will she begin to feel safe enough with you herself to entrust your grandson to you.

We understand how close you feel to giving up, but we hope you won’t. We hope you have others in your family you can turn to so that you won’t have to turn away, and so that this little boy can have all the family he needs too. You sound like you have been such a critical support for your son — facing adversity together is the true test of family.

Responses to questions are not intended to constitute or to take the place of medical or psychiatric evaluation, diagnosis or treatment. If you have a question about your child’s health or well-being, consult your child’s health-care provider.

Dr. Brazelton heads the Brazelton Touchpoints Project, which promotes and supports community initiatives that are collaborative, strength-based, prevention-focused sources of support for families raising children in our increasingly stressful world. Dr. Sparrow, a child psychiatrist, is Director of Strategy, Planning and Program Development at the Brazelton Touchpoints Center. Learn more about the Center at www.touchpoints.org.

Reprinted with permission from the authors.

MEDICATED KIDS: A PARENT’S GUIDE, PART 2

More than 6 million children in the United States are taking psychiatric drugs — the result of a dramatic recent increase in the number of children being diagnosed with serious psychiatric disorders. The drugs, which are often not fully assessed in children, can cause serious side effects, and little is known about their long-term impact. Reporting on the phenomenon, the PBS program FRONTLINE aired “The Medicated Child” to help families sort through a range of medication-related issues and to team up with their children, doctors, and teachers to face these issues, Frontline asked Joshua Sparrow, M.D., a child psychiatrist at Children’s Hospital, Boston, and an assistant professor at Harvard Medical School, to contribute to a Viewer’s Guide to accompany the program. The Viewer’s Guide is posted at www.pbs.org/frontline/medicatedchild. This article, adapted from that guide, was the first of two parts in successive weeks in the FAMILIES TODAY column.

This article, adapted from that guide, was the second of two parts in successive weeks in the FAMILIES TODAY column. (This article, the second of a two-part series, accompanies “The Medicated Child,” that aired on Frontline on PBS. A more extensive version of the article appears in the Viewer’s Guide posted at www.pbs.org/frontline/medicatedchild, where the program itself may also be seen online.)

When a child is troubled and needs help, it is crucial that parents, the child, doctors and teachers work together as a team. An unfortunate but avoidable consequence of diagnostic labels and medication treatment is that these may lead children to believe that their future is no longer in their hands. But they can be helped to understand that even though their struggles are not their fault, their actions remain their responsibility.

This can be presented to the child not as more pressure, but as a form of respect that will help them fight for their own role in their recovery. Parents too may feel that as they entrust their child’s psychiatric care to a professional they themselves can do little to help.

Yet of course parents remain children’s most important caregivers and advocates. To play this role effectively, parents can take several steps:

  1. Pay attention to your questions and doubts about your child, and to the fears, feelings and memories that these may stir up in you. Parents may be haunted by their own pasts and the family’s history, or their worst fears for the future, and not dare to speak them.
  2. Talk about your concerns with the professional caring for your child, or, if it is more comfortable, with friends and family members. Many parents find relief and renewed strength when they meet other parents experiencing similar ordeals. Often they set up their own support groups to face challenges and share resources together.
  3. Stay connected with friends and family who care. Find allies who can help, even if just with daily routines. The symptoms of a psychiatric disorder in a child can overwhelm a family and derail its usual ways.
  4. Become an expert on your child’s condition. Expect that doctors and counselors will answer your questions, and that they acknowledge when and what they don’t know. Talk with other parents, teachers and school counselors, read, and use — with caution – the Internet.
  5. Trust your instincts. You know your child better than anyone.
  6. Involve your child in the process. Far too often children are not respected as partners in working to understand their challenges, and learning to manage them.
    Listen to your child. Try to understand and value his perspective. Ask your child how he understands his struggles and what he thinks will help. Help him find ways to describe the problem that preserve his self-image and give him hope for the future: “Sometimes your feelings just get too strong for you to handle, but we can work on this together so that you’re back in control.”

You may be referred to a child psychiatrist by your child’s pediatrician, or a school guidance counselor, or, if he’s already receiving treatment from a non-medical mental health professional (a social worker or psychologist) who isn’t trained and licensed to prescribe medications.

If you decide to pursue this recommendation, prepare for your visit by gathering together medical information, reports you have about your child’s behavior and notes from your own observations.

You can expect that the psychiatrist will do the following

  1. Take a thorough history, including allergies and medications, along with the child’s other medical and/and or psychiatric conditions and the family history of medical and/or psychiatric conditions.
  2. Carefully consider and rule out possible medical and neurological causes of the child’s symptoms before settling on a psychiatric diagnosis.
  3. Ensure that you and your child understand his or her views on the problem and what to do about it, and that he or she understands yours.
  4. Plan for regular monitoring and follow-up. Children should be seen at regular intervals by the prescribing physician to monitor medication response, side effects, and to assess whether the drug is still needed.
  5. Take a conservative approach. The psychiatrist should help you weigh the risks and benefits of medication, and of not using medication. The lowest effective dose possible should be used, and, whenever possible, the use of more
    than one drug at a time should be avoided to decrease the risk of side effects.
  6. Inform you about side effects. Before your child starts on medication, the doctor should explain what to look for to know that it is working. He or she should also point out possible side effects and what to do about them, and when
    to call the doctor or to go to the emergency room.
  7. Provide holistic and carefully coordinated treatment. All appropriate non-drug treatments should also be considered. The psychiatrist should collaborate with your child’s pediatrician and other professionals (teachers, and when other treatments are needed, with psychologists or social workers providing counseling or psychotherapy, speech and language therapists, physical and occupational therapists).
  8. Be compassionate. The physician should be ready to respond to the most pressing question that many parents ask: “What would you do if this was your child?”
  9. Treat your child with respect. The physician should include the child in the process of understanding his struggles. He or she also should take great care to show you all that the child’s strengths and potential are appreciated, and that his psychiatric disorder does not define him.

Partnering with your child’s school can also make a big difference. The school ought to offer plenty of opportunities for him to learn about himself, to discover his strengths, to compensate for his vulnerabilities, and to experience success
as the reward for his efforts.

School can also be a useful resource to help you assess, observe and monitor your child’s behavior. Often, a teacher might be the first person to alert you to potential trouble. That news may be painful to hear — but this is the time to preserve and strengthen your relationship with teachers and other school personnel:

  1. When you disagree with teachers about their judgments or recommendations, or when you are first informed of an upsetting behavioral problem, try to keep your initial reactions to yourself until you’ve had a chance to gather your thoughts, and to strategize about how to best respond so that everyone will be on your child’s side. Start with positive, appreciative comments about some aspect of teachers’ efforts, even if you disagree with others.
  2. Show you understand the need for classroom rules and expectations so that the child’s teacher will be more inclined to balance these with your child’s individual needs.
  3. Invite teachers to describe your child’s behavior, and show them that you are listening carefully, even when you disagree. Then start with your observations rather than your conclusions so that consensus on a more complete picture of the child’s behavior can emerge.
  4. Instead of criticizing teachers for how they’ve handled your child’s struggles in the past – which is bound to make them defensive, focus on working together to avoid such problems in the future. Ask them to share with you their ideas about what is causing the behavior, and then concentrate your efforts on the causes that you all can do something about.

Work with teachers to recognize that you all need a plan of action for your child that you can agree on. It is easier for children to relax and understand what is expected of them when parents and teachers can show that they know how to work together as a team, share the same expectations, and give the same messages.

  1. With the school as your partner, you can ask teachers and other personnel to:
  2. Describe their understanding of the child’s problems, and of the behaviors that lead to their concerns.
  3. Agree to put aside terminology that labels a child and instead provide carefully
    articulated, nonjudgmental descriptions of what they observe.
  4. Acknowledge what they don’t know, and when they need help from you, your child, or from other professionals to understand your child and how to work with him. For example, a psychologist may be needed to test for a learning disability (that often underlies a child’s frustration and explosive behavior) and recommend strategies to overcome it.
  5. Respect your decisions, even if they may disagree with them.
  6. Try to see the situation from your perspective.
  7. Show compassion to you, and care about your child.

ONLINE RESOURCES

As you would in gathering any information on the Internet, stick to trustworthy sources. The American Academy of Child and Adolescent Psychiatry (www.aacap.org) offers parents extensive, widely respected information on psychiatric conditions and treatment in childhood.

Responses to questions are not intended to constitute or to take the place of medical or psychiatric evaluation, diagnosis or treatment. If you have a question about your child’s health or well-being, consult your child’s health-care provider.

Dr. Brazelton heads the Brazelton Touchpoints Project, which promotes and supports community initiatives that are collaborative, strength-based, prevention-focused sources of support for families raising children in our increasingly stressful world. Dr. Sparrow, a child psychiatrist, is Director of Strategy, Planning and Program Development at the Brazelton Touchpoints Center. Learn more about the Center at www.touchpoints.org.

Reprinted with permission from the authors.

MEDICATED KIDS: A PARENT’S GUIDE, PART 1

By: T. Berry Brazelton, M.D., and Joshua Sparrow, M.D.

More than 6 million children in the United States are taking psychiatric drugs — the result of a dramatic recent increase in the number of children being diagnosed with serious psychiatric disorders. The drugs, which are often not fully assessed in children, can cause serious side effects, and little is known about their long-term impact. Reporting on the phenomenon, the PBS program FRONTLINE aired “The Medicated Child” to help families sort through a range of medication-related issues and to team up with their children, doctors, and teachers to face these issues, Frontline asked Joshua Sparrow, M.D., a child psychiatrist at Children’s Hospital, Boston, and an assistant professor at Harvard Medical School, to contribute to a Viewer’s Guide to accompany the program. The Viewer’s Guide is posted at www.pbs.org/frontline/medicatedchild. This article, adapted from that guide, was the first of two parts in successive weeks in the FAMILIES TODAY column.

(This article, the first of a two-part series, accompanies “The Medicated Child,” that aired on Frontline on PBS. A more extensive version of the article appears in the Viewer’s Guide posted at www.pbs.org/frontline/medicatedchild, where the program itself may also be seen online.)

Psychiatric medication can rescue a child from a desperate future, and sometimes even save a child’s life. But such medication’s effects on children’s developing minds and bodies are largely unknown. Most psychiatric drugs aren’t approved by the Federal Drug Administration for use in children. Even the diagnosis that may occasion the drugs is challenging since “normal” behavior in
children varies widely. Symptoms like impulsivity or hyperactivity may suggest a host of diagnoses.

Parents are bound to wonder whether psychiatric drugs will really help. Many parents also wonder whether such drugs are used to control developmentally “normal” but “unacceptable” behavior. For example, hyperactivity in a child can interfere with learning and maturing — but sometimes it simply means that too much sitting-still is being demanded of the child. Even when a psychiatric diagnosis is appropriate, parents worry about the price the child
will pay. Identity and self-esteem take form in the vulnerable childhood years but last a lifetime. Taking psychiatric drugs is a tangible symbol of a diagnosis that children often misunderstand to mean they are defective. However, when treatment helps children manage more effectively at home and school, it can
bolster fragile self-esteem. In some instances, cognitive behavioral therapy or other nondrug treatments may replace medication or reduce the amount needed.

Adjustments of the school and home environment to the child’s needs may also help. Parents often can sense when psychiatric attention is warranted. The following are a few of the warning signs that parents are usually right to worry about when the signs persist and pervade — though none indicates a specific condition, nor that medication will necessarily help.

  • You spend more time being angry or upset with your child, or trying to control her behavior, than having fun together.
  • You realize that you are not enjoying your child, and worry that you have fallen “out of love.”
  • You feel worn out or worried by your child’s behavior.
  • People in the family are arguing about the child.
  • You feel like you don’t know or understand your child anymore.
  • Your child’s behavior changes suddenly — for example, activity level or choice of friends.
  • Your child spends prolonged periods withdrawn or in isolation,
  • She rarely smiles or seems happy. Her emotions seem limited mostly to anger or irritability.
  • Your child’s reactions are out of proportion to the situation.
  • Other children don’t like your child, keep their distance, think she’s odd or are afraid of her.

If you have concerns about your child, you deserve honest answers to your questions. Start with your pediatrician, who can refer you to a mental health professional if your child needs this kind of help.

UNDERSTANDING YOUR CHILD’S BEHAVIOR WHEN IT SEEMS ‘OUT OF CONTROL’

When parents are concerned about a child, catchall terms like “angry outburst,” “temper tantrum,” “meltdown” or “out-of-control” are bound to come to mind. But careful observation and detailed descriptions of the behavior will be more useful to parents, children, and mental health professionals as they work together to understand the behavior and then determine how they can help.

Try keeping a journal of your descriptions, and note the following:

Warning signs
Can you tell that your child is on the verge of an “episode”? Can he tell? Can he ask for help before it’s “too late”? Is he especially vulnerable when tired, hungry or anxious, or stressed?

Triggers
What seems to set the behavior off? Sometimes there is no apparent trigger — yet there still may be one that isn’t easily recognized. Was the child’s reaction out of proportion with the trigger’s severity? Ask your child if he thought something happened that made him upset, and get a sense from him of his perception of its seriousness relative to his reaction. But try not to make him feel that you are criticizing him for reacting the way he did, since that will only make it harder for him to team up with you to work on regaining control.

Contexts, settings
Is there a pattern to when and where the troublesome behavior occurs? Always before leaving for school? When there is a transition? Separations? Only with certain friends? Only in private?

Symptoms
What does your child do and say during an “episode? How would you describe his mood? If he’s angry, is there some basis in reality to his concerns? Can he continue to converse? Can he be reasoned with? Does he settle down quickly if something happens that he cares about, like a friend’s visit or call? How long does the episode usually last? How often does it occur? How have you tried to help him settle down? How does he calm himself? What makes the episode worse?

Aftermath
Does he go right back to “normal” after an episode? Or does he seem tired or moody for a prolonged period? Can he remember what happened? Can he talk about it? How does he feel about it? Ashamed? Remorseful? Indifferent?
Does he want help? Or has he given up? Can you plan together to watch out for the warning signs and work together to prevent other episodes or to settle them sooner?

The price you and the child pay
How do your child’s symptoms affect him and the family? Have you had to change the way you and other family members live your lives? Do you all feel that you are “‘held hostage”‘ by the child’s behavior? Has the child’s performance at school or relationships with friends been affected? Does he feel that he can no longer understand or like himself?

Responses to questions are not intended to constitute or to take the place of medical or psychiatric evaluation, diagnosis or treatment. If you have a question about your child’s health or well-being, consult your child’s health-care provider.

Dr. Brazelton heads the Brazelton Touchpoints Project, which promotes and supports community initiatives that are collaborative, strength-based, prevention-focused sources of support for families raising children in our increasingly stressful world. Dr. Sparrow, a child psychiatrist, is Director of Strategy, Planning and Program Development at the Brazelton Touchpoints Center. Learn more about the Center at www.touchpoints.org.

Reprinted with permission from the authors.