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CF communication > Balancing Reality with Hope: Discussing Your Child's Special Medical Needs with Other Adults

Balancing Reality with Hope: Discussing Your Child's Special Medical Needs with Other Adults By Lisa C. Greene

One parent says, “I don’t want the teachers to treat my son like he’s a 'sick kid' so I don’t want them to know how serious his illness really is.”
Another parent says, “I’ve told the teachers about her illness but they just don’t get it! Just because she doesn’t look sick doesn’t mean her special needs should be ignored.”
This is such a tough issue for families living with a child with cystic fibrosis and other serious chronic illnesses. How do we best communicate with others about our child’s special needs?

As the mom of two kids with CF, I have faced this situation many times over the years.  Due to my hubby’s employment, we have moved several times since our son, who is now ten, was born. With each move, I have to start the learning curve all over again: what, when and how much should I tell people about CF? It’s not exactly the kind of thing one brings up during the Sunday potluck: “Oh, by the way. Did I mention that both of my kids have a genetic disease with a shortened life-expectency?” 

When we moved to CA, I was attending a neighborhood mom’s group for almost a year and hadn’t yet mentioned “the CF factor.” It was a social group with the kids and the appropriate opportunity just never came up. One day I was giving my daughter enzymes before a snack and a mom caught me. By then, she was comfortable enough to ask me, “What are those for?” And I spilled the beans. She was stunned and said, “Wow. I had no idea that your kids have cystic fibrosis.” And I remember thinking, “Well, I don’t exactly have a banner on my forehead that says ‘My kids have CF.’ How could you possibly know?” Of course I didn’t say that- it was just a (rather snarky) thought that popped into my head. But I realized right then that having healthy-looking kids can be a double edged sword. The blessing is that we are treated normally but the ‘un-blessing’ is that we might not be taken seriously.

I have really struggled with this issue and have been burned by forthright honesty. I once shared our story during a church small group meeting. Afterwards, a man came up and said, “Thanks for sharing your story. There was a guy in our office who had CF. He was a great worker; one of our very best. And then he died.” I can’t tell you the thoughts that popped into my head on that one… Luckily, I kept my mouth shut. But, I can tell you that after I had some time to cool off, I realized he was just trying to help. In his own (albeit insensitive) way, he was trying to tell me that this person had lived a full, rich, productive life and was missed.

For me, I have found that hope-filled honesty is generally the best policy. There have certainly been times when it wasn’t appropriate for me to launch into the whole CF scenario but I guess the ability to feel your way through those situations takes time and experience. Being able to read the cues of others during an emotionally charged conversation isn’t always easy. It takes some preparation and practice.

My “CF Explanation” is now down to a few key sentences that include: “CF is a genetic disease that primarily affects the lungs with thick mucous that causes lung infections. The average life-expectancy is 37 years and climbing rapidly due to great medical advances and dedicated fundraisers. So there is a lot of hope that my kids will outlive me. However, their outcome depends on many things including how well they take care of themselves because there is a lot of medical care that they have to do every day.” And then I explain their daily care; that is if their eyes haven’t glazed over by now- you know “the look”. 

If it is a teacher, a coach or a person who is intimately involved in helping me to keep the kids healthy, then I tell them that their partnership can make a big difference in how well my kids live and how long they will live. And then I coach them on my child’s unique needs including the need to be treated like everyone else. I let them know what I need, not what they have to do. There’s a big difference here. Being aggressive is telling others what they have to do and is seldom effective unless you’re the boss or the president. Being assertive is telling others what I need.

Aggressive: You need to move my kid away from that other kid who is coughing in class.
Assertive: I would appreciate it if you could move Jacob away from the kid who is sick so he doesn’t get sick, too.
Aggressive: You need to figure out why my kid is coughing all the time.
Assertive: I am so concerned about Kasey’s cough. Can you please help me figure out what we can do about it?

Human nature says that when one demands, the other resists so aggression and demands don’t usually get us very far. But sharing what we need and phrasing it politely will generally result in cooperation. Note that this is true with our kids and spouses, too.

I have found that as long as I remain calm, confident, and open, most people are generally pretty accepting and supportive. Some are compassionate and helpful. And others are downright amazing. And with the ones who are jerks (yes, there are those, too), I do my best to either ignore them or go around them like to a school counselor or principal. But the best defense against people who don’t take my kids’ health seriously is to make sure my kids do. The more responsibility my kids can take for their own well-being, the less I have to rely on other adults.

It’s a tough balance: over-protection versus denial. And, like everything else, there are extreme ends of the spectrum. Some people want to treat my kids like a wounded bird which is the last thing I want. And others ignore the reality which is equally unhealthy. But sometimes, it’s hard enough for me to find balance, so how can I expect others to?
The best way I can help my kids is to educate people in a matter-of-fact, kind way without taking things personally (and I know it is personal so I’m not saying it’s easy). What helps me to keep an even keel in those moments of frustration is the knowledge that I am setting the example for my kids and how they will handle the same issues in the years to come. Plus, I don’t want teachers or doctors to take out their frustration with me on my child.

The really great news about cystic fibrosis is that there is a lot of hope. Yes, some die young and, yes, our children suffer. And there are also people who are over 70 years old with CF; I know of two personally. Remember, median life-expectancy is calculated by figuring the middle number where there is an equal number of people above and below. But this newest generation of people with CF has the benefit of breakthrough medical advances that the numbers don’t clearly reflect. I wonder what the life-expectancy would be if we could remove the population of people who didn’t have the benefits of Tobi, Pulmozyme, hypertonic saline, The Vest, etc. And then we have newborn screening now which makes a huge difference. If we could factor in these things, I’ll bet the median life-expectancy would be much higher than 37.

Generally speaking, there is no doubt that the life-expectancy is shifting upward rapidly and, I believe, there is nothing but bright, shining hope on the horizon for people who live with CF and those of us who love them.

Lisa C. Greene has been helping parents raise healthy, happy families for over seven years. She is an author, parent coach, international speaker and the mother of two children with cystic fibrosis. With Foster Cline MD, Lisa co-authored the award winning book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs.” Lisa donates proceeds from her writing and speaking to help in the fight for a cure for cystic fibrosis. See www.happyheartfamilies.com for Lisa’s “Tips for CF Parents.”

Since 2004, Lisa has been working with Dr. Cline, a well-known child psychiatrist and co-founder of Love and Logic, to create a new program for parenting kids with health issues based on the popular Love and Logic tools and concepts. For more information, see www.parentingchildrenwithhealthissues.com.

Lisa Greene

This website is the sole property of Lisa C. Greene, M.A., CFLE. Lisa is a certified parent coach, certified family life educator, public speaker, and a mom. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information,  visit visit www.ParentingChildrenWithHealthIssues.com.  
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