Camp: To Go or Not To Go... A Mother's Dilemma

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

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Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Chronic Communication At Home: Encouraging Kids To Be More Independent

By Gary McClain, MS, PhD, LMHC

Why can’t I?
Don’t you trust me?
I know how to take care of myself!

If you are the parent of a child with a chronic condition, you have probably heard this from your child a few times, if not many. Based on what my clients tell me, knowing how to respond is not easy.

All children, especially teens, want to have a measure of independence. While resolving the conflicts that arise around independence is never easy, this process can be especially challenging for parents of children with bleeding disorders. Children with a chronic condition like a bleeding disorder may be feeling frustrated about their own limitations and responsibilities, as well as guilty about how these limitations affect other family members, which may result in being that much more intent on being independent. They also struggle with being perceived as different.

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Parents carry the burden of maintaining responsibility for keeping the home together with all fears and uncertainties that go along with the job. In the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”

It is only human to have lots of fears around your child’s bleeding disorder. After all, part of your job as a parent is to be aware of and actively preventing the “what ifs.” Chances are, you’ve already experienced some of them, or have come close.

Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep him or her from getting actively involved in their own care.

When kids with bleeding disorders aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal and can rebel, placing their health at risk and causing tension at home. And third, a young adult trying to make it on their own, and who has not learned to manage their own bleeding disorder with confidence, is at great risk.

You, Your Child, and Independence: Finding the Middle Road

It’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. However, I do think there is a middle road that can keep you feeling confident your child is adequately protected, while your child can also feel more confident and in control.

Here are some suggestions to help you help your child with a bleeding disorder become more independent:

Face your own fear

It’s only human to have fears regarding your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.

Encourage your child to express his/her feelings

Start the conversation by simply asking how your child is feeling and offer reassurance that you want to hear whatever it is they want to tell you - even the scary stuff. Give a few extra hugs and supportive words.

While you’re at it, let your child know how you’re feeling

Make your home a safe place to talk about emotions.

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Set boundaries but offer choices

Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to a sense of feeling “less” than other children. Provide your child with a sense of control by allowing for some choices in daily routines, in diet and in self-care. Explain the options and reasonable boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his or her perspective and to give them an opportunity to make suggestions - don’t forget that siblings have needs of their own.

Teach all children to be advocates

Children with bleeding disorders need to learn to speak up for themselves so that teachers, employers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.

Consider attending camp together

Some great camping experiences are available for children living with bleeding disorders and their families. At camp, you and your children can learn from the experts on the latest knowledge and treatment of bleeding disorders. Kids can have fun with other kids who are also living with bleeding disorders, while you share experiences with other parents. Camp is also a great opportunity for kids to learn how to be more independent, even to get started on infusing themselves. Camps are held around the country. Attendance is almost always free, and even transportation may be subsidized.

Remember that not everything is a medical issue

Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Many of the issues that come up with kids and teens are developmental.

Remember: The worst thing that can happen is not always the worst thing that can happen

It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? Is this causing me to create the worst possible scenario that may not even be realistic? When your child pushes back on a limitation, keeping this in mind may help you realize that, well, it might just be time to relax.

Take care of yourself

Families facing a chronic condition like a bleeding disorder are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being and find a safe place to talk about how you are feeling, even the bad stuff.

Parenting a child with a bleeding disorder can be challenging, but don’t let the fear factor keep you from helping your child build confidence and independence.

Be patient.

Take it one day at a time.

Create an atmosphere where all family members communicate with honesty and compassion.

About Gary McClain

Gary McClain, MS, Ph.D., LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, JustGotDiagnosed.com