Giving ‘Till It Hurts!: Parenting a Child with Special Health Needs

"I dearly love my kids but sometimes I hate being a mom," she had confided to her best friend, Kelly, over coffee just that morning. "I feel like I am constantly fighting them over something. If it's not the TV or video games then it's homework or money or chores. That's bad enough with the older two but when Tyler refuses to do his medical treatments it just sends me over the top. He knows that if he doesn't take care of his lungs, he'll die but I don't think he cares." Tears welling up in her eyes, Janice continued, "He's sixteen and will soon be on his own. When he turns eighteen, the doctors can't even give me any information about how he is doing. Without me there to nag him into compliance, I know that he is going to take years off his life. He just doesn't get it. I don't know what to do. I'm worn out and I feel like a complete failure as a mom." Kelly had nodded and gently patted Janice's hand. "It sounds like you are having a hard time. Hang in there; you're a great mom. It will get better..."

Janice sat on the stoop recalling Kelly's encouraging words but she was having a hard time believing things would really get better. She'd been here before. Sure, things improved for a little while but then Tyler would do something to trigger another crisis. She recalled the last one: when she had discovered that he was throwing his meds into the garbage can at school. One of the students discovered the pills and reported it to the school officer. There were plenty of rumors flying around about the discovery of the drugs until one of Tyler 's buddies recognized the pills as pancreatic enzymes. Even up to the end, Tyler refused to 'fess up. And then there was that time when the school bully made fun of him because of his cough. Tyler decked him and was suspended for three days. Tyler was clearly having a hard time coping with having cystic fibrosis.

Janice just didn't know how to talk with him anymore. She sighed. Kids today give parents enough to worry about: sex, drugs, alcohol, eating disorders, cutting. But, when there are life and death medical issues on top of it all, it seems like just too much.

"How did it come to this?" she whispered to herself. She remembered when Ty was a little boy. He was so eager to please that it didn't take too much effort to get him started on his meds. Oh sure, he'd hem and haw every now and then but she'd promise him a special treat and he'd comply. It didn't take long until he began demanding, "Where's my treat?" upon completing his medications. Janice, also eager to please, made sure she had a plentiful stock of candies and small toys on hand.

This bribery thing had bothered Janice a little. She kind of felt like he was holding her hostage but "kids need to be motivated; I'll do whatever it takes to get him to comply." Besides, she didn't want to make his life tougher than it already was; she felt really bad for him. And, if truth be told, she really didn't have the will to fight him. It was so much easier just to give him the treat. Unfortunately, the treats starting getting bigger and bigger: a new snowboard for a month's worth of treatments; a trip to Disneyland after a hospitalization for IV meds. Tyler always wanted more and rarely seemed grateful. He could easily bring his mom to her knees with a simple refusal to take his life-saving medications. To make matters worse, Ty blamed her when things didn't go right or when he got sick! There was no question about who was in control of the home but Janice was out of ideas. And energy. She was simply worn out.

Special parenting skills are needed when raising kids with health issues. Both the stakes and the emotions can run very high- a potentially dangerous combination. Kid's lives are saved when they are protected by their parents. Kid's lives are lost when they are over-protected by their parents. If protection is not the major portion of love shown in the early years, the infant dies. If protection is a major part of the love parents show teens, they become hostile, dependent and usually, rebellious. That rebellion may lead to car accidents, drugs, and death.

Protection, like all good things, has a dark side when delivered too freely. In fact, protection could be one of the best examples of: "Too much of a good thing is not a good thing!"

Toddlers don't have the capacity to be more concerned about maintaining good health than the parents so parents must shoulder most of the concern about health issues in toddlerhood. Depending upon the maturity of the child, by the time a child is in first and second grade, they should be shouldering more of the concern about their health than the parents. Certainly by the time most children are in third grade and eight-years-old, they are well aware of their health problems.

When children suffer from illness or medical conditions, they need more protection. Parents understandably fall into checking on medication dosage and timing, managing dietary concerns, scheduling trips to the physician's office, and become much more involved in their children's health than the parents of well children. Depending upon the medical condition, its severity and the character of children and the parents, the line between necessary protectiveness and over-protection can become very blurred. The problem is compounded by the fact that the more a person is protected, the more he or she comes to need it. So giving protection, whether it is bestowed by loving parents or the federal government, generally leads to a spiral of ever-increasing involvement, with the associated risk of ever-increasing entitlement and hostile dependency.

When people are hostile dependent, it means they feel helpless or cheated and always demand more while expecting others to give it to them, rather than accepting the responsibility for taking care of their own wants and needs. They can become angry, bitter, blaming, rebellious and hostile. And when children become rebellious and hostile, they often become self-destructive. For a child, what could be more effective to upset loving parents than to refuse to take good care of yourself? What causes more parental angst than a child who takes drugs or ignores medical regimens? So the parents of ill children can feel boxed in between the rock of unchecked illness and the hard spot of attempting to control the health of an increasingly resistant child.

There is a Cycle of Overprotection that involves spiraling steps into the quagmire of Hostile Dependency when children have health issues:

1. Childhood illness
2. Parental involvement
3. Becomes parent's problem
4. Child becomes blaming and demanding
5. Parent feels guilty
6. Parents excuse negative behavior
7. Child's self-image dropes
8. Poor self-care
9. Starts all over again

This sad cycle is so common that it might almost be considered "normal" for kids with serious health concerns. But happily, with the right techniques, it is less likely to occur.

So how do parents avoid raising hostile-dependent children? And how can parents best insure that their child is "respectful, responsible and pleasant to be around"? There are many good answers that are effective for most children most of the time. Those answers include how parents should encourage rather than praise their children; how they can develop problem-solving skills in their children; how parents show empathy rather than anger before allowing consequences to fall and include techniques that avoid showing parental frustration. It truly takes a book to clearly define all the answers but here are some guidelines:

• Entitlement begins when children no longer say "thank you" to giving parents.
• Hostile Dependency shows when children are angry when parents don't fix the child's problem.
• When children demonstrate a higher ability to perform tasks for others than they show at home, then parental over-protection and low expectations is the usual cause.
• Children who are blaming attempt to manipulate and increase parental guilt in order to control the situation.
• Wise parents do not excuse disrespect, for it sets the foundation for their child's hostile and self destructive behavior.

Finally, we rejoice in the fact that protection of others has a positive side. A shining aspect of the human soul sparkles when we act on our desires to help one another out of difficult situations, even at our own detriment. On a deep level, sacrifice for another may actually be a gift we give ourselves. When we see a person who has lived a sacrificial life for others, our own soul confirms, "That's a sweet person who deserves a special place in heaven!"

But too much sugar leads to a death from diabetes.

This material is from the book Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline, M.D and Lisa C. Greene. Dr. Cline is a well-known child psychiatrist, author, and co-founder of the popular Love and Logic parenting program. Lisa is the mother of two children with cystic fibrosis and a parent coach. For more information, visit www.ParentingChildrenWithHealthIssues.com.