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Just Start Somewhere -- Strengthening Your Child’s Chronically Ill Body

When it comes to exercise, children with chronic illness are at a disadvantage to begin with. Their physical bodies are often weak and stamina’s moderate at best. Just like the average person, chronically ill kids look at others around them; comparing and then formulating an expectation of what their bodies should or shouldn’t be able to do.


Our kids ask themselves:

“Why am I not as strong as the next person?”

“Why do I have less endurance?”

“Why can’t I keep up?”

And so on….


When it comes to exercising, my son has valid reasons for not wanting to start. After all, he normally tires easily and being a little dizzy is just a part of life. In addition, fine motor skills and coordination vary, depending on how his body is responding to the day. Committing to anything, let alone exercise, is just plain hard.


So recently, I spoke with my son about starting some kind of strengthening exercises.


At first, the answer was an emphatic “NO.” He was brutally honest with me as to why he did not want to start; telling me that he just didn't want to know how little strength he had, going on to say that if he did start exercising, he would be forced to experience and see where he truly was.


In his mind, that could become more depressing than uplifting. He went on to say that he wasn’t sure if he was ready to come to terms with it and that there was no guarantee he could actually improve. I told him that he may have to just settle for the fact that exercise might only help him maintain his current status rather than improve -- and maintaining current strength may have to be justification enough to get started.


He knew that he was starting way behind anyone his own age and size, asserting that he felt like he was beginning a mile back from the normal starting line. The resulting question from him was…”If I say, “Yes,” then -- When? Where? How?” It all seemed pretty overwhelming for him.


As a parent, I knew I needed to be my son’s exercise cheerleader and coach. Also, I felt the need to impart some important points. Here is what I came up with:

  • Do Some Homework

What are the best strengthening or toning exercises for your child’s unique condition?

  • Just Start Somewhere

Start -- no matter how far back you are from the starting line. You absolutely and positively cannot use the same measuring stick as anyone else. My son often says he has the body of an “old man.” In fact, he once had a doctor tell him just that (I’ll stay off that topic for now!!) I told him it just doesn’t matter. You get to define what exercise means to you. If it means using 1 or 2 lb weights for five minutes or walking to the mailbox, then you’ve exercised.

  • Modify If You Need To

Make the exercise work for you. If you need to sit down to lift weights, that is fine. If you need to use one arm at a time instead of two, that’s fine.

  • Decide on Length of Time

Length of time doing the exercises is not important. If it’s only five minutes in duration, that’s fine.

  • Choose Your Own Schedule

Choose the frequency and best time of day for you. Try for consistency; recognizing that your body may not always cooperate. If you get “off schedule,” then just re-adjust and just get started again. (You may need to expect this as a recurring theme.)

  • You Don’t Have to Feel 100% to Try

Do what you can do based on the day and feel good about it. If you are not sure whether you feel up to doing something, give it a try anyway. “Feeling fair or just okay” often has to be enough of an incentive to “try.” The satisfaction of trying can go a long way!


The example I’m going to describe below is when I finally was able to persuade my son to start lifting light weights.


Do Some Homework

I did a lot of research and homework on my son’s conditions and also consulted with a physical therapist. We especially had to keep in mind my son’s Dysautonomia (POTS) condition because dizziness and balance is a big issue. It is very hard for anyone with the condition to lie flat on the floor, so we had to make sure his head was always raised.


Just Start Somewhere

I convinced him to start exercising by lifting very light weights. No embarrassment. No shame. I stressed to him that form was more important than anything else. He chose 6 exercises:

  • 3 different arm exercises with 2lb weights

  • 3 leg exercises with 2lb leg weights

Modify If You Need To

Because of his condition, we needed to make sure his head was up and not laying flat. We decided to have him lift weights while seated. We also purchased an adjustable weight bench where he could control the incline.

Decide on Length of Time

We started with eight minutes because that’s all he could tolerate without being exhausted. I didn’t want him to be overwhelmed and disappointed, so we celebrated at the eight minute mark.


Choose Your Own Schedule

My son and I discussed his schedule. He decided to exercise every two days. Although I would have chosen every other day, he had to own it and therefore make his own choice. Also, he decided how many reps he would do of each exercise. He decided when and if he would increase his reps or go up in weight or even add additional exercises.


You Don’t Have to Feel 100% to Try

Do what you can do based on the day. Another big lesson I had to teach my son was that he didn’t have to wait to feel perfectly good to do something. He just had to feel “good enough.”



As a parent, I realized how important it was for me to guide and set up my son for success.


After two or three weeks, a tiny bump sprouted on my son’s arms. Muscle!! The look on his face was truly heart-warming. The small visible change was all it took for him to continue. He was a believer and I felt proud. And even better...he’s now moved from 2lbs to 7lbs per arm!


Quoting Ralph Waldo Emerson: “All life is an experiment. The more experiments you make the better.” Whether you call it an experiment or a test or just a first step… your child just has to start somewhere.



#chronicillness

#parenting

#experiencinglife

#microgoals

#redefininglife

#newnormal


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.


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