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Why is it so important to parent children with serious medical issues “right?”

Because the stakes can be so high. If a child fails in taking responsibility for him/herself, it could have life threatening implications. Diabetes and cystic fibrosis are good examples. We commonly hear stories of teenagers and young adults with CF not taking their illness seriously or rebelling against parental control. They don't take care of themselves so of course the parents and doctors come down even harder on the kid which makes the situation worse. Sadly, some of these kids spiral downwards until they land in the hospital and some don’t make it back out. Or, if they do, they have permanently impaired lung function.


We hope to reduce the number of families that experience this heart-breaking cycle. And, it can be mitigated with some training and gumption. Families that start with their kids early will benefit greatly.

Parental responses have a huge impact on the way their children cope with health issues.  Dr. Trotter, a pediatrician, expresses this so well:

“Parenting children with special healthcare needs magnifies the results of effective and ineffective parental/caregiver responses. Raising a child with a chronic illness involves an often-confusing state of mixed uncertainty, apprehension, and heightened responsibility. I have had a special interest in medical genetics and children with special healthcare needs throughout my entire thirty-plus year career and, until now, have never come across a book or program that truly meets the needs of these families. One of my mantras for many years has been, ‘Don’t disable a child with disabilities!’ As this book points out so clearly, these children, even more so than children who are not obviously medically impacted, need to be confident, competent, respectful, responsible, and, ultimately, independent.”  Tracy L. Trotter, MD, Pediatric & Adolescent Medicine; Fellow of the American Academy of Pediatrics

It is risky for us to say “do it right” because so many people bristle at the possibility that they might be doing it wrong. We don’t want to imply that there is only one right way and that it’s our way. That is not what we are saying. But, it is true that common parenting responses like yelling, anger and punishment, bribes and lectures are much more likely to result in rebellion than our approach. And we want parents to know that so that they can make a conscious choice about the responses they use. Without awareness of the dangers of ineffective parenting responses, then there is no hope for change. And the risks are too high to just "wait and see" how things turn out. 

We walk a fine line because we also don’t want parents to feel guilty about not "doing it right.” Parents of special needs kids are already packing around alot of guilt!  But, if we find things that need to be changed, we have to let go of guilt and move forward. We all do the very best we can with what we know at the time. The important thing is to move forward. Over the past thirty years, we have seen extremely dysfunctional families change their lives with this material. Even relationships with adult children change when parents use healthy, effective parenting responses. We want parents to focus on the hope.

What makes parenting of ill children difficult?

    The consequences are more dire.

    Parents are normally over-involved which causes a whole host of problems.

    Children can more easily manipulate and become entitled.

    Parents have difficulty in separating “I can’t” from “I won’t.”

    Issues are very difficult for all to handle. Discussions about death are different    
    than discussing poor grades.

    Children are more isolated from their peers so social problems are more likely.  

Why is parental over-involvement dangerous?

It affects both the child’s capability to cope and the quality of the interpersonal relations between child and parent- both critical contributors to the child’s ability to become a hope-filled, productive and independent adult. 


The problem with over-involvement is that the child can easily get entitled and suck the parent into the blame game which is “when things go bad it is all your (the parent’s) fault.” When parents take responsibility for the problem, it almost always results in arguing. The bad thing about arguments is that they interrupt discussion and productive resolution of issues. 

Problem: Eventually, the child has to emancipate. There is no more “We” on getting the clotting factors, making insurance payments, getting the medications. One of the biggest challenges parents have is letting go of their adult child and “making sure” they are ready to be on their own in college, etc. We teach parents how to start this process much earlier than what they think they should. Most parents start preparing for emancipation when the child becomes a teenager. Really, this process starts when the child is able to hold his own spoon. We teach parents how to use the early year “parent adoration factor” to their advantage. Most teenagers don’t listen to what their parents say much less adore them!           

What are the ideas and specific suggestions concerning parental over-involvement?

Self image is built on action – Booker T. Washington said: "Few things can help an individual more than giving him responsibility and to let him know that you trust him."     

Children must become the expert on their disease.

Curiosity and interest vs. worry and concern.

Using questions to help children think. Questions help a child become the expert on their disease. 

How are you going to handle the situation if……?

What are your plans for…..?

Having FUN: “Do you think your blood will attract ants?” 

Children feel controlled and helpless by their disease so choices are very important.                       

When are they going to take their breathing treatment?

What would they like to watch or do while doing medical treatments?

Another way of avoiding over involvement is to emphasize the difference between empathy and sympathy.

You said earlier that the consequences for poor choices can be dire. What are the guide lines for consequences and can you give some examples.

Risk/Benefit determinations need to be made. Allow natural consequences to occur only when there is no immediate danger to life or limb. In that case, parents rescue the child and set limits. But then imposed logical consequences can be used that are related to the “crime.” So for instance, if a child refuses to take her insulin, then you do what you have to do to protect the child. But then the parent may refuse to take her to a Girl Scout meeting because of all the parent’s energy she drained from refusing to take her insulin. Or she may need to do some of the parent’s chores to replace the energy that was drained. And of course the way the consequences are delivered is key: with empathy and sadness rather than anger and frustration.

The more parents use empathy and consequences in the “non-medical” areas of the child’s life like schoolwork, chores, money management, etc. the more likely it is that the child will recognize that all decisions have consequences- even the medical ones. Basically, kids who are responsible in non-medical areas are more likely to be responsible in medical areas, too. 

There are some instances where parents can allow natural consequences to fall in the medical arena like for instance with pancreatic enzymes. That is the perfect medication for the child to “fail” on because missing a dose or two is not life-threatening but can be very uncomfortable (with gas, cramping or loose stool).  If a parent responds to the child’s discomfort with empathy and understanding instead of “I told you so” or frustration then the child is likely to learn an important lesson about good self-care.  We have several such stories in our book.

How is this book different from other books about kids with illnesses and medical issues?

There are good books available that talk about the physical aspects of specific illnesses, how to navigate the healthcare system, how to work with schools, how to get special medical equipment - all important issues. And, many of these books touch upon some of the aspects of parenting like parental self-care, dealing with grief, and the importance of setting limits with kids even when they are sick.

However until now, there hasn't been a book or program that focuses specifically on behavioral/ emotional parenting aspects and effective parental responses. Regardless of the medical issue, in true Love and Logic fashion, we teach parents what to say and how to say it when they are in the trenches with their kids. We make it easy, through role plays and stories, for parents to learn and implement essential parenting techniques that just might save their kids’ lives.  

We focus on giving parents the tools to raise their children to become responsible for self-care issues as well as hopeful about their future. We teach parents and caregivers how to:

- Encourage children to love life despite health challenges.

- Handle refusal to take medication and do medical treatments.

- Skillfully respond to children’s special emotional needs.

- Avoid power struggles and other common parenting traps.

- Promote responsibility without nagging or lecturing.

- Navigate sibling, family and couple relationship issues.

- Enable children to make good self-care decisions.

What do you mean by a program? 

We will offer a variety of formats- the book, DVD programming, audios, live presentations and web-based support at www.ParentingChildrenWithHealthIssues.com. We want it to be easy for people to learn the tools and to get support as they implement them. We accept questions via the website and plan to take advantage of technology with podcasts and webinars.  It takes time and effort to make changes and we want to be there to help people be successful. 

How did this program come about?

Lisa Greene, my co-author, is a mom with 2 kids with cystic fibrosis and she saw a real need for it. CF is a life shortening genetic disease which causes the mucous in the lungs to become thick and sticky which causes lung infections and lung failure. The average life expectancy is about 37 now.

There is much hope for the future because of the great medical advances in recent years. But what this also means is that there is a great deal of time and effort spent caring for the kids. They do breathing treatments every day including chest physical therapy which can take about an hour a day. Plus, they take lots of pills daily and need to eat certain foods, etc. Let’s just say there are lots of opportunities for power struggles! And, the stakes are very high. These kids have to do their treatments or they can get very sick and die. Rebellion is an issue as well as passive-resistance.


Lisa was using Love and Logic tools for general parenting issues but began to have more and more challenges with the medical treatments so she contacted Jim Fay and asked him to create this program. Jim had me (Foster) call Lisa and the rest is history.


We actually started out as a DVD program with role plays and interviews with kids, parents and doctors.  We were writing a little pamphlet to go with the DVD and it kept growing! Now that the book is done, we’ll finish up the DVD program and then go to work on some audio programming. The website is up and running so check it out.

What has your response been so far?

We have been very well received by everyone who sees it. Lisa’s son was just in the hospital for a week and she showed the galley copy to the child life specialist and social worker. They both brought it home to read overnight because they were so excited about it! We have had pediatricians, nurses, therapists and parents review the manuscript and they all have great things to say about it. At our workshops, many parents say it is life-changing. The other common comment is, “I wish I had this material twenty years ago.” 


You emphasized early in the book that parental self care is important. What are your thoughts on that?

Time alone to rejuvenate

Relief parenting – so busy putting out fires, there’s no time for buying asbestos.

Summer camp.

Other people WANT to help, but don’t know how.

Being a consultant is a much easier life than being in control of the corporation.

When kids take on more responsibility for their lives including their healthcare issues, there is less parental time and energy spent on juggling it all.


The following information has been found to work with most children most of the time but not all children all of the time. Parents must determine whether these tools are appropriate for their family given their child’s unique medical situation. This information is not intended to replace professional medical or mental health care. Please consult your doctor.

Clips and Snippets from Parenting Children with Health Issues

“Packed With Essential Learning, Real People and Real Help”


Ordinary parents with their “run-of-the-mill” kids can occasionally be taken aback by spur of the moment questions that are difficult to answer.  Such questions might be, "How often do you and dad have sex?"  Or "Did you do drugs when you were a kid?" Those with chronically ill children have even more difficult questions. Their kids might ask, "When am I going to die?"  Or, "Am I really going to go to Heaven?"  Or, “Will my disease kill me?”


“Isn't that something! Here is a little girl, on death's doorstep because of refusing to take her medication and a week later she is proudly taking responsibility for herself and making a conscious decision to live.”


“Is it difficult to put on a wet shirt on a cold morning?  Well, try doing it with one arm!”


Self-concept is raised every time parents look at their children and say, “Gee thanks” for something the kid has done.


A search for life’s answers can be seen as a search for control and predictability.


“Perhaps luckily for you, Trevor, you have illnesses which only require self control and awareness on your part. You don’t have cancer, a wasting neurological disease in which you end up paralyzed and unable to breathe, or a brain hemorrhage. Your illnesses are perfectly designed for building character, should you choose to go that route.”


And the wise mom said, “I’m kind of put out right now. I’ll get back to you later. Try not to worry about it. We’ll be in touch.”


Anger is almost always laced with frustration around the question: "How can I make this kid take good care of him/her self?”


To say that Ricky was upset that night is like saying that Mt. Vesuvius burped the day it buried Pompeii.


Love and Logic says, “Be sad for; not mad at.”


Children love to hear a frustrated parent say, “Am I going to have to supervise every one of your treatments?!!”


When an accepting person shows love to an individual, when that individual knows that the other does not approve of the behavior, it brings the two closer together. It is a bonding experience. This is the power of Grace!


“Advice” is something that should be followed. “Thoughts” are offered for another’s consideration. Wording and attitude make a world of difference. 


Angry and resentful feelings drive most of the world’s self-destructive behavior. That’s a universal truth that applies to both terrorists and our children.


We have never run into even one teenager who complained during therapy, "My parents just don't control me tightly enough. I really wish they’d say ‘no’ to me more often."


“Are you guys going to stop bickering or would you rather pay me to listen to it?”


If we knew we would always get one warning each year for speeding before we could receive a ticket, wouldn’t we drive like lightning until that warning was received?


The child whined, "Why? What did I do?" And her mom replied, "I'm not really sure, honey, but I notice that I'm feeling an energy drain."


His mom helped him figure out which Christmas toys he could forego to help pay for the ambulance. It turned out that those expensive few miles provided an excellent learning experience!


“It is hard to express how freeing it was to feel blameless in the face of his turmoil.”


When mothers or fathers show anger towards a two, three or four-year-old children, they don’t think, “There s/he goes again!” They simply feel bad, cry, run off to their room or are scared.


A father and son laugh together over a poster picture of lungs, as the six year old draws bugs (red dots) down in the bottom of the lung. Those bugs experience a sudden and agonizing death when medication (blue crayon puffs) snuffs them out.


In pre-teen years, “merge with the herd” is primary. In the high school years, kids strive to stand out in the group.


“After the soccer game, I had this little scratch and about four drops of blood.  Four drops! The way mom was screaming around, you would have thought I needed clotting factor!" 


Do we as parents wish with all our hearts that our children were responsible and self sufficient and do we do all we can to encourage that……or are we bound up in needing to be needed?


Vibrating acceptance is more than simply saying, “Honey, you can talk to me about anything.” It is putting that statement into action by not over-reacting; asking thoughtful questions about the child’s perception; giving acceptance but not necessarily approval, and providing eye contact and body posture that says, one way or another, “That’s an interesting subject. First, give me your thoughts and I’ll give you mine.”


“Fortune cookies can be pretty boring so to liven things up, I "read” mine as follows: "You are a mean and nasty man. You have no friends and you will die lonely."  Six-year-old Jake said nothing, but popped up from the table, threw my paper cookie statement in the kitchen trash, and silently returned. Later, when I was alone, Jacob confided, “Sometimes those fortune cookies can be quite hurtful.  It's best not to think about them and just throw them away.” Then, after a thoughtful moment, he added, “I never got one quite that bad.”


"As I look back on it, I realize I could have been so much more help to Bobby. However, at the time, my own son, Jess, was seven, and also a brunette, brown-eyed boy. I think that may have played a role in my denial.  Bobby's death devastated me but I learned from it.  Now, when a child asks if they are going to die, instead of saying, ‘Of course not’ and closing down the conversation, I give hope but I explore their fears.” 


“The fact was, it didn't have to be changed exactly on schedule.”  Janet later admitted, "I feel so bad as I look back on it….  Finally, one day, in exasperation, I asked Ginny why it was so important to wait half an hour. She said, ‘Seventh Heaven, my favorite TV show, starts a half an hour after my dressing is changed.  If you could wait till then so I could watch it while you change my dressing, I think it would take my mind off being hurt so much.’”


The parent lights a candle and shows it to the child, saying, "Josh, this candle is like your body and made of carbon atoms, but instead of flesh and blood, the candle’s carbon atoms are wax.  And, like your own physical body, the candle itself is not all that important, but the flame is. Holding that flame is what the candle is all about. For you, the flame is like the spark in your eyes, the sparkle in your smile, your thoughts and your personality.


It’s paradoxical that our rational side can come up with guilt producing irrational responses in it’s search for reasons because if bad things have reasons, life becomes more predictable and controllable, so we tend to look for reasons like something we could have done differently. It might be a little crazy, but it gives us a feeling of power and control.


“Well he’s not facing facts.”


“So how do we give him a wake up call about his condition?”

“Why should we say anything?”

 “Well deep down inside he may be hurting.”
”Maybe you are the one who is hurting. We gave him openings to express inner doubts, and he didn’t take us up on it. He is taking good care of himself. So be careful you are not advocating something to meet your needs, not his.”


Jacob, a very responsible 7-year-old with CF, has recurrent nasal infections. He faithfully washes his nasal passages daily and uses the prescribed nasal spray, but upon developing nasal polyps (again!), breaks his mom’s heart by inquiring with quivering voice, “Mom, is this happening because I haven’t taken good enough care of my nose?”


Somehow, Bonnie’s parents have never been able to disentangle themselves from making Bonnie the center of their energy and attention. Now they are between a rock and a hard spot, having created a demanding hostile-dependent child who they fear could become a street person if they do not accede to her continuing demands on their resources and energy.  Bonnie accepts their gifts, which have considerably drained the family estate, resentfully (“it’s not enough”) and with nary a “thank you.”


Chronically ill children can easily drift into feelings of being “unfair-ed upon” by life, resulting in an entitled and demanding personality if their demands are met by parents who, because of guilt, denial, or “feeling sorry for” placate the demands.  When infants, because of pain or illness or the discomfort of treatment cry, they need an over-abundance of comfort and holding. Although this may result in a demanding toddler, that is an easier problem to rectify than a child who is difficult to handle because of lack of response to chronic pain in infancy.


Some parents don’t parent “just” children. Instead, they live with personal growth systems that are presented to them in different versions and models. Some of the growth systems are called Down Kids; some are called Kids with Klienfelter’s Syndrome; some are known as Kids with Asperger Syndrome; some are autistic.


For Rob, that meant time to take his meds was not 12:02 and not 10 minutes early.  It had to be 12 o'clock or nothing. That’s when the hands of his watch were together, and that’s that!

Dealing with a child’s life-threatening denial takes finesse. Reacting with anger, frustration, blame (whether on the child or society) or hand-wringing is never as effective as responding with sorrow, curiosity and interest in a child’s poor choices and difficult situations.

Optimistic and positive parents, at the very least, are comforted in knowing that worry, sorrow and fear showing in their children’s eyes, originate from within the children themselves and are not simply a reflection of parental responses.


“Honey, I am so glad you agreed to have this conversation with me.  I've been troubled by something about myself for a long time.  I just never felt I could do anything about it.  I find that many people, when they see me in the store, look away.  Sometimes people ignore me.  I know that's because I am just plain fat. I never said that about myself, but it’s true!  I've never done anything about it because I thought it would be too hard.  But now, I think I can do something about it.”


Triangulation is a purposeful transfer of misinformation or unnecessary information in order to promote discord. It might be seen as a form of manipulative gossip.


“I carry us along in a wave of adventure, ideas, and new experiences while he provides the stability and practicality that makes sure we don’t get swept away by a tidal wave!  Together, we make a great team.  One without the other would either be too impulsive or too staid.  And yet, in the blurred vision of these many differences, we have at times lost sight of each other.  The differences through the years have become less a cause for celebration and cooperation more of a reason for dissent and dissatisfaction.