I’m pretty sure it’s safe to say that most parents don’t want to waste precious time correcting or disciplining chronically ill children.
All we want is for our children to be as happy as possible and to enjoy the lives that they’ve been given.
When my daughter, Bethany was two years old, she was diagnosed with a brain tumor and a stroke.
She now has a chronic illness in the form of epilepsy, as well as other permanent disabilities.
When Bethany was first diagnosed we weren’t thinking ahead to a time in the future when she might need to be disciplined.
All we cared about was keeping her alive!
And besides, dying children tend not to behave in ways that need being disciplined, anyway.
Thank God Bethany’s battle with a life threatening illness is over.
She’s no longer in immediate danger of dying, but the memories of her lengthy battle with a brain tumor, all the suffering she’s gone through, and the fact that she still has lots of seizures make it difficult for my husband and I to discipline her.
We don’t want her to go through any more stress or unpleasant experiences in her life!
However, somewhere along the line between her near death experiences and the present, my husband and I realized that Bethany’s behavior had gotten slightly out of control.
She does need to be disciplined every now and then.
And so we have found ourselves reluctantly joining the ranks of parents who are disciplining chronically ill children
Bethany not only has a chronic illness, she is also developmentally disabled.
Basically, she’s two year old with autism, a language processing delay, and a severe, uncontrollable seizure disorder.
So, let me give it to you straight, even though She is a 124 pound young adult, she functions in real life as a toddler.
She comes complete with giant sized temper tantrums, has great difficulty understanding lengthy spoken directions, and has an extremely limited vocabulary.
And unfortunately, she does engage in a few troubling and undesirable behaviors every now and again.
Below are some guidelines that my husband and I have developed for disciplining Bethany. We decided to share them because we thought others might find our tips helpful.
- Is the child capable of understanding what we are asking of them? We must be sure to explain what we are asking our children to do in short, simple, and precise language, by example, or even in pictures.
- Is the undesirable behavior a common characteristic of their disability? I suggest parents educate themselves extensively on their child’s own unique condition. Is the child realistically capable of achieving what we are asking of them? Expecting our children to do the impossible is cruel and abusive.
- Could this behavior be a side effect of medications? I suggest parents familiarize themselves with all side effects of each medication their child takes. Asking our children to fight the negative side effects of a medication is also impossible and cruel, in my opinion.
- Is the child’s misbehavior an attempt to communicate something important to us that he or she is unable to tell us in a more appropriate manner? Is the child hungry, thirsty, tired, or not feeling well and unable to let us know? I am reminded of an incident when Bethany refused to participate in an outing. She kept pointing to her neck and telling us she was waiting for it to go away. We had no idea what she was talking about. We thought she was just being obstinate and uncooperative. The next day her neck was horribly swollen. A trip to the emergency room revealed that she had an infected lymph node. She had not been able to tell us she was sick in a way that we could understand.
- Are we expecting the child to be acting as her chronological age rather than her functioning age? Because of Bethany’s brain injury, she functions as a two year old. It would be unfair to expect her to behave like a typical 19 year old.
- Is the child acting this way because she needs attention? Some children crave attention so much that they will even behave negatively in order to attract attention. Try giving the child some loving, positive attention before disciplining them.
If after exhausting all other options, we determine that Bethany’s behavior is actual misbehavior we try to implement some form of positive discipline to change the undesirable behavior.
Below are some suggestions for putting together a positive discipline plan for your child.
- Set a standard of behavior for your child and be consistent. Explain the standard of behavior to your child in a form that he or she will understand, be it simple written instructions, spoken words, or in pictures.
- Teach your child in simple, incremental steps how to meet your standard.
- Model the desired behavior for your child.
- Allow your child some control over their own lives by offering choices. Examples: “You must go outside to play, but you can choose the activity you do.” “You must get dressed, but you can choose your outfit.”
- Catch your child being good and praise them for it. Make a BIG deal about good behavior and ignore undesirable behaviors if possible.
Some children react positively to reward systems. I see nothing wrong with promising rewards for good behavior, However, I am personally against the use of behavior charts. In my opinion, behavior charts are merely reminders of the child’s failures and a public display of humiliation.
While I certainly don’t claim that these suggestions have been the magic bullet in putting an end to all of Bethany’s undesirable behaviors, they have been very helpful to us and I believe they offer a good place to begin.
Books I have read and recommend:
Disclaimer: I am not a behavior therapist, psychologist, or psychiatrist and am not claiming that implementing these suggestions will “cure” your child of all undesirable behaviors.