Raising Kids with Alopecia (from ex-kid with Alopecia)

When young kids and teenagers first present with Alopecia Areata, it affects the entire family.

It’s usually a highly emotional, stressful and even scary time. There are so many unknowns with this condition – why it happens, how it might develop, will treatments even work?

That’s why AAAF exists. I’ve spent the last few years involved with the largest Alopecia focused organisation in this country, first as a Youth Ambassador, then Support Ambassador and currently as Secretary. I’ve spoken with dozens of parents and kids trying to come to grips with this new diagnoses, and they’re all asking the same question: What do we do now?

A full disclaimer on this before I get started: I’ve never been a parent and I’ve never raised a child, alopecian or otherwise. I maintain strongly that I still am a child myself – a perspective which grows more concerning with each passing year. But I have had alopecia myself since I was very small and have gone through almost every form since.

I can’t tell you what it feels like to raise a kid that’s going through this, but I do know what it feels like to be a kid trying to understand AA and negotiate its’ effects on my life. If you’re going through something similar, then it’s my hope that maybe these four pieces of advice can help.

-Georgia, AAAF Secretary

 

  1. Keep Calm.

As you well know, receiving a diagnosis of AA can be a really scary period for yourself, your child and your whole family. The lack of conclusive information makes it hard to plan for the future and you can feel like you’re making decisions in the dark.

But I promise you, it will be okay.

Hard as it is, you’ve got to stay calm.

Most kids, and especially the very young, will take their reaction cues to the condition from you. If you’re upset, distraught, fearful of the condition, they will be too. I know that sounds like a lot of pressure to put on you, and I’m really sorry. But it’s not actually as hard as it seems. In fact, there are only two things you need to do.

Firstly, try not to focus too much on the hair loss. You might want to check the patches every day, or keep the hair, or measure the patches. My advice? Don’t. Alopecia is frustrating because it will do what it will do, and there isn’t a lot you can do about it. Cataloguing the changes will just become a source of stress, for both you and your kid.

Secondly, try your best to remember the facts of alopecia. The vast majority of people with AA don’t experience full hair loss. Most people have their hair grow back. And for those who, like me, do experience full time full size baldness?

We still have a 100% chance to live full, happy, healthy, active, engaging, and fulfilling lives, the exact same as everybody else.

It’s going to be okay.

 

  1. Keep Doing Stuff.

It’s a common response for people diagnosed with AA to withdraw from activities they once loved. This happens most with teenagers. Physical withdrawal from hobbies and activities and is often paired with emotional withdrawal from relationships and interests.

Encouraging your kid to stay engaged in the things they enjoy is vital for two major reasons.

Firstly, the rapid changes to one’s physical appearance during AA can have a huge effect on self-image and identity. If a child or teen is feeling upheaval about who they are as a person due to the emotional impact of AA, having interests and hobbies to fall back on can be extremely affirming. Not only does succeeding in activities and interests give us a sense of achievement and confidence, it also helps us to define who we are. Sure, we might be bald now, but we’re no different. We’re still a soccer player, artist, gymnast, girl guide, musician, photographer…

Secondly, staying engaged in hobbies and activities, particularly ones with a  team or social component, help to build our child a supportive network to rely on. Having alopecia can feel very isolating, especially if you don’t know anyone else with the condition. Building strong social connections through participation in sports or the arts or schooling can really help to combat any feelings of isolation.

 

  1. Social and Emotional Support.

Research has shown that receiving emotional and social support can improve quality of life for people with AA more than receiving medical treatment and intervention.

As a parent, you do your best to prepare you kid for the world around them. To help smooth the way for kids with AA, I would recommend three things – discuss, explain, and practice.

Speaking about alopecia in the home in a way that’s open, honest, and casual will have a large impact on the way your child, and your whole family, feel about the condition. How you treat the condition as a family will build the foundation for how your child experiences alopecia. If just talking about alopecia is something that is private and always serious or sad, actually having the condition will feel like something that is isolating or shameful. If it’s something which is discussed in an open and casual way, this will help your child and your family feel more comfortable and more confident about the condition. Remember always that this is normal.

Making sure you explain to your child what is going on is also vital. Not only does it help them to feel more in control and less frightened of what’s going on, but understanding the condition will make it easier for them when other people ask about it.

And they will ask about it. Oh boy, will they ask.

So what can you do about that? Practice how they might respond if people as about it. This will help them feel prepared and, again, more confident. It’s completely up to you and your child how you respond to people in relation to AA. If your child want to explain the condition, practice that. If they want to tell them it’s not their business, that’s totally fine to. Get yourself a script that feels comfortable for how you want to deal with it. (Pro tip: Siblings should also be included in practice how they’d like respond to people, because they will be asked about it too.)

Another hugely useful form of social support is other alopecians. Getting in contact with other people and families who are in the exact same boat as you is one of the best things you can do to normalize and stabilize the experience of AA. Not only do you get to share feelings with people who have been there and get it, you can build a network with which to ask questions and rely on other people’s expertise. I really recommend trying to attend alopecia related events if you can, or interacting via online resources.

 

  1. Remember always that kids are just small adults.

My best friend works in a preschool. She has this saying that has really changed the way I interact with the kids I come into contact with through my work with alopecia support.

“Kids are just adults with less life experience.”

It’s easy to think that young kids don’t experience alopecia in the same way as teenagers or adults. I think personally that that’s a mistake. The very young might not have the vocabulary to explain their feelings of the condition, but I think the emotions themselves are very similar.

I mentioned earlier how important it is to make sure kids understand their condition as it helps them be comfortable and confident with it. But more than that, it’s absolutely vital to help kids understand their condition because it’s their condition. Children have the same right to aware of their medical state as adults do, even if the process of explaining it is vastly different.

I also think it’s important for children to have some input into the decision about treating their alopecia. Obviously, age appropriateness is a strong consideration here, but if you’re looking into treatments for alopecia which may be physically painful or have side effects, the child has a right to be part of that discussion.

Obviously I’m not advocating that children should be their own guardians or have the final say in their care – kids don’t always know what’s best for them and the parents role in these decisions is vital. I don’t want to diminish that. But for situations like alopecia, where the condition doesn’t do physical harm and treatment is elective, it’s important for the child to have a say in what happens to their body.

The most important thing in all of this is to talk to your kids. Ask them how they feel about their alopecia and if they want to try treatments. Discuss why they want treatments and unpack those feelings. Make sure they understand that no treatment for alopecia is guaranteed success.

It’s not always easy to talk to young kids (or for that matter, teenagers) about these kind of topics, but it is vastly important. The more you communicate openly and honestly, the more trust you place in their ability to make decisions, the stronger the person they’re going to grow up to be.

 

Raising kids with alopecia areata isn’t always easy. Parents do their absolute best and can still have a difficult path. But always remember you aren’t alone with this condition and there are many people who can help ease the way. AAAF is currently working on a Parents Pack, a resource to help families like yours navigate these murky waters and have a positive journey. You can keep updated with the process (and get involved as well) by checking out our facebook.

In the end, this is all just one persons thoughts on a very complicated topic. What have you found works for you and your family? What experiences have you had that we haven’t covered here? Let us know in the comments – or get in touch with us at lovealopecia@gmail.com to start writing your very own article to share your thoughts with our whole community.

 

As for kids with alopecia themselves? I’ve met an awful lot of them over the years and I’ve got to say, though they all come from different backgrounds and have very different stories to tell, they all have one thing in common. They’re all pretty damn amazing.

Love, Alopecia.

 

 

 

 

 

 

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