How I help my child with cystic fibrosis gain independence
My 5-year-old daughter is already learning to manage her CF care
The day my children entered the world I felt responsible for their future path in life. As they have grown, I’ve helped them learn age-appropriate skills to hopefully enable them to be independent, successful adults. Like most parents, I teach my kids the basics, such as how to walk, use the bathroom, and brush their own teeth. But for cystic fibrosis (CF) parents, helping our children become autonomous is more nuanced.
It is my goal for my 5-year-old daughter, Claire, who has CF, to gain independence and confidence in managing her disease on her own. As her mother, I feel responsible for helping her get to that point. However, learning functional life skills as a child with cystic fibrosis can be complex. That means I must find opportunities for Claire to learn to take ownership of her disease. That’s a heavy task for a young child.
Fortunately, I’ve found ways to hopefully make her care seem more accessible and less overwhelming, even from a child’s perspective.
Little Miss Independent
The first major skill we introduced to Claire was taking responsibility for her enzyme administration. Most people with cystic fibrosis need pancreatic enzymes in order to digest their food properly. When Claire was a baby, an adult was responsible for breaking her enzyme capsules open and spreading the beads onto a spoon of applesauce.
As soon as she gained the motor skills to hold a pill, we began having her help “sprinkle” the applesauce with the enzymes. I saw how proud she was when we praised her for administering them on her own. I capitalized on that, giving her more freedom and responsibility to count out the enzymes for each meal. We took baby steps toward more and more autonomy with her enzymes. Soon, she was not only counting them on her own, but swallowing the pills whole.
Before Claire started school at age 3, we had a conversation with the school nurse about how her enzymes would be administered. She explained that many students on campus who required medications during the school day would come to the nurse’s office. However, we wanted to avoid this, as the school nurse’s office is normally a gathering spot for germs and sick kids.
The school allowed us to do a practice run to see how Claire would handle her enzymes independently. She was able to self-administer them without any adult assistance or prompting, much to the surprise of the school nurse. I like to think that all our practice and encouragement at home played a role in her self-sufficiency. Now a confident 5-year-old, she sometimes reminds me that she needs to pack her enzymes for an outing.
Making learning a game
Another thing I started around the age of 2 was helping Claire identify her medications. I had heard of teenagers with CF not knowing the names of their medications or what they were used for. I spoke with our clinic’s social worker about how detrimental this could be to a child transitioning to adult care. My husband and I decided we would work with Claire on identifying her medications and learning which ones were administered at which times. Obviously, I had to break it down to be toddler-friendly.
Claire’s medications are delivered monthly, usually in a large box, so I make a big deal of the unboxing process. We count her different medicines, and she goes through and names each one. I know continuing this will help her as she gets older to differentiate between her meds. She actually gets excited every month to open the box and look through it. Oftentimes, I follow this learning exercise with a treat or preferred activity. I want to associate all her hard work with reward.
Sometimes I have to remind myself that Claire is still just a child because she’s been forced to become more responsible at a young age. I believe that building her confidence with these small tasks now will help her grow into a responsible adult. I will have to come up with more ways to build her autonomy as we go through different stages. For now, I’m working on making her responsibilities more manageable, so as she grows up, they will seem like less of a burden.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Karen
You are doing an amazing job, Mom! Back in the early 90’s my son with CF had to hide his enzymes to take them with lunch in middle school. I am glad your school is understanding. He also told me, on our way to cross country and track practice, I am no different than my friends, I just take medicine. When he told his pulmonologist he was going to medical school after college, she discouraged him. He is now an MD and unstoppable because he knows he just takes medicine!! Your girl is going to do great things to change the world!! 💗
Rebecca S Stokes
We've been doing the same. Not as diligently as I should be, though. I have not entertained the idea with her of swallowing the enzyme capsules because she is still struggling with her weight gain. Did you notice any difference at all with the amount she eats once she started swallowing the capsules?