Upfront, my sincere thanks to Dr. Maureen Michele, M.D. for posting my article on her website as well: maureenmichelemd.com/
When and How to Push Your Chronically Ill Child
(Deciding if it’s worth pushing - If so, when and how much?)
Being a parent is tough. Being a parent to a chronically ill child takes parenting to a whole other level.
Our kids' lives along with our own consist of doctor appointments, medical labs and procedures, trialing of different medications and so on. Some of those activities bring along consequences…..a painful procedure……side effects from meds…… missed events.
Chronically ill kids often lag in maturity because their time is taken up by “medical experiences” and not “normal childhood developmental experiences.” Kids may become reluctant to try anything…..new meds…..suggested procedures… or even activities with their peers. So as parents, when we want our chronically ill kids to do something, we often have to………
PUSH
Deciding to push your chronically ill child to try something is a difficult process and has to be thought out carefully. It is also important to understand why your child might reject a course of action. Many times, they are just trying to protect themselves in order not to feel worse. They are often fragile emotionally and/or physically from dealing with their illness. Past negative experiences weigh on them. Lack of experience weighs on them. The last thing we want for our kids is to experience more pain or trauma - physically or emotionally.
So, how do you know:
IF it’s worthwhile to push
WHEN to push?
HOW MUCH to push?
The following questions and considerations help me to make my decision:
Will the good outweigh the bad for my child? What are the stakes and what are the odds?
Is there true value or quality it could add to my child’s life?
Will it help my child developmentally? (Remember that they are often behind their peers because of lack of experience)
Will it give my child a sense of worth and contribution to the world?
Does my child have the know-how and tools to be successful?
Can my child handle the outcome emotionally right now? If there are negative outcomes, can they get back up at this point in time?
Is my child truly ready? (Make sure you truly listen to them.)
Do I think the timing is right for my child?
Have related past experiences been positive or negative for my child?
Will it work with my child’s schedule?
How will it impact the entire family?
Here are some examples where I asked myself those hard questions and had to really consider whether pushing was the right thing:
Pushing my child to try a new med (knowing all of the side effects he has had)
Pushing my child to try a new approach (knowing we have tried so many without change)
Pushing my child to try a new specialist (knowing he has been to more doctor appointments than many people in their entire life)
Pushing my child to try to become social (knowing he has had few experiences and is socially behind his peers)
Pushing my child to try a new food (knowing he is so sensitive because of major GI issues)
Pushing my child to get outside in the sun (knowing his body has trouble regulating temperature)
Pushing my child to drive (knowing he gets dizzy often and feels insecure about his skills)
Pushing my child to do more, get out of the house and be part of the world (knowing he has little energy)
Example of a Success Story
There is one particular situation where I made the big decision that PUSHING was the right thing and the results were positive.
Here’s my story:
First of all, my son has extremely low energy with only a few hours a day to pursue anything. We work very hard to make the most of what he has. After completing high school and moving on to the discussion of college, we decided that college was likely not a possibility for him. In his eyes, only being able to handle two classes at a time (due to his low energy and other issues with digestion/dizziness/brain fog) would mean too many years to complete a college degree.
One day after the college discussion, my son casually mentioned that he would like to work and earn money but was concerned about what that would even look like for him. We came up with a list of criteria - flexible hours, work from home, reasonable deadlines, likely max of 3 hours per day.
We discussed the next step of developing a resume and a “narrative.” However, he didn’t do anything to move forward with it for a few months. I thought long and hard about whether it was time to push him. I started going through my mental list of questions on pushing him to develop a resume and “narrative” he would use to describe himself.
Again, I ran through my list of questions to help me figure out…... Is it Worth it to push? Is it Time to push? How Much to push?
Would the good outweigh the bad? (sense of purpose) YES
Could he handle the outcome emotionally right now? (rejection) YES
Is there true value or quality it could add to his life?(new skills) YES
Would it give him a sense of worth and contribution to the world? YES
Does he have the tools? Not yet
The answers seemed to lean to YES. I decided it was worth pushing and also the right time for him to put together a resume / narrative but decided that I wouldn’t push hard because he didn’t have the tools. I helped him and made it as easy as possible by giving him resume examples. I even had him consult a career coach to help put one together, since I knew it would not work coming from me. Pushing him gently on this first step proved successful.
The next step would be to look for a job. However, he did not move forward. I knew that low self confidence and being unsure played into it. I waited a few months and then again I looked at my questions to answer…. Is it Worth it to push? Is it Time to push? How Much to push?
Would the good outweigh the bad? Maybe
Is he truly ready? He really wasn’t sure
Does he have the tools to be successful? Not entirely.
I chose to not push quite yet. I knew he didn’t know how to find what he was looking for. Instead, I chose to do some of the legwork for him. Why would a Mom do the legwork of looking around for their child’s job? The simple answer is that parents with a chronically ill child often have to step in more than others just to create experiences. I knew that once he got a first job, he would have the confidence and know-how to find the next.
I looked at job boards and on-line groups. Also, I started asking friends and acquaintances about potential jobs. And not long after, while looking at one of my Facebook groups, there it was Posted online: Part-time. 15 hours/week. Computer savvy. Flexible schedule. Just a perfect fit for my son.
Now I needed my son to step back in. I had to decide how hard. I knew his resume was ready. I knew that time was of the essence. When a new job is posted, you have to act sooner than later. Again, I went through some of my own questions to answer…. Is it Worth it to push? Is it Time to push? How Much to push?
Did the good outweigh the bad? YES
Could he handle the outcome? I hope so
Can he handle the outcome emotionally? If there are negative outcomes, can he get
back up? I think so
Is he truly ready? YES
I decided it was not only the right time but also the time to push really hard. “ACT NOW," I told him. What do you have to lose? What’s the worst that can happen? I came at it from every possible angle I could to push him. Finally, I got him to agree to respond to the ad. I even sat with him while he crafted a letter to the employer.
We practiced interview questions in case he got the opportunity. We drafted potential questions for the interviewer. We role played and role played some more. Well, after a couple of weeks and a phone interview, he got the job.
What this job has done for him is nothing short of amazing. He feels better about himself and just overall happier. He finally has something for himself and a sense of purpose.
This would not have happened if I had not decided: IF to push………….WHEN to push……….. HOW MUCH to push.. I’m not saying pushing always works. I just kept “brewing more hope” and got lucky this time!
Disclaimer
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.