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Monday, April 14, 2014

The Earlier, The Better: Teaching Self-Care

A while ago, I began emailing with a mother who had adopted a daughter with a different kind of ichthyosis many years ago. Her daughter is now grown, and she and I shared emails for a while about all kinds of different topics.

One of the things she said has really stuck with me as I care for Brenna's skin each day: she told me to involve Brenna in her own skin care and health care as early as possible.

She said that her own daughter began "helping" with her Aquaphor applications at the age of 2 or 3, and just a few years later, could rattle off to the dermatologist all updates about her skin and describe any symptoms she was experiencing. This, she told me, really encouraged her independence and her self-awareness about how her skin felt, what care she needed for it to feel the best, etc.

I loved the concept, and more and more these days, I am discovering how right she was in this thinking.

Starting a few months ago, Brenna has been putting the lid on her Aquaphor jar as we near the end of her application. And in recent weeks, I've been asking her about her care before I do it: "Do you need lotion?" "Do you want eyedrops?"

I've been astounded and excited that she seems to be realizing more and more when her skin feels dry and when her eyes feel dry. I usually ask her several times a day if she wants eyedrops, and usually once or twice a day, she answers yes… even just a few months ago, the answer was always no.

Most recently, we've had to use a topical medicine on some areas of her skin. As soon as I carry her to her changing table, she'll grab the tube of ointment, try to say "medicine" and gesture to the areas where it needs to be applied.

Brenna is also very aware of any pain, and if she is whining for what seems like no apparent reason, I will ask if something hurts. She answers "yeah," I ask "where?" and then she'll point to her hands or feet or to her g-tube site if they are causing her pain.

In the same way that we teach independence to children by training them to use a real cup instead of a sippy cup, or teaching them how to brush their teeth by themselves, I want Brenna to learn early on how to care for her skin. Because I think this will open up a lot more opportunities for her she grows up - to participate in more activities, to attend more events and even to travel more.

I know we will feel more comfortable as her parents letting her go to a friend's house or a birthday party if we know that she will be able to tell an adult if she doesn't feel well or if she needs something… and I know other parents and family members will feel more comfortable with being responsible for her if she has an active role in her care.

Of course I know that general education will be necessary in a new situation or with a new person…but teaching her early to care for herself and to be aware of what her body needs will only foster independence and minimize reliance on other people to care for her.

If she comes home really dry from a friend's house, I want the burden to be on her to ask for lotion, not on her friends' parents to have to pester her to apply lotion. If she starts to feel unwell while playing outside on a warm day, I want her to be able to recognize this feeling and know how to cool herself off.

Our dermatologist "warned" us that Brenna will probably go through stages as she gets older - sometimes she will take a very active role in her skin care and look forward to baths and lotion…but there will also be stages where she fights it. (Like when I know I'll feel better if I don't eat a half bag of Doritos…but I fight that and down those chips anyway.)

Seeing the early stages of Brenna's interest in caring for herself is exciting… and when I step back and write about it, I realize my baby has really moved into the true toddler stage. Learning to eat has been a huge step toward independence for her, as she loves to self-feed, and I think she is discovering how proud she feels by doing things all by herself.


  1. You approach Brenna's care with an amazing amount of thoughtfulness and respect for her as an individual. She is so lucky to have such an intelligent and insightful mom to guide her toward independence.

    1. what a beautiful comment, thank you!

  2. I found that when I could manage my skin are myself my skin improved remarkably. Less dryness through the day, less infections and an easier life.

    1. yes, this is what I hope and expect! when you're able to do it yourself, you know what feels best.

  3. This is something we're working toward with our 7th child, Mason. He was born with Spina Bifida and has a lot of specialists he sees. He also needs catheterized every 4 hours and needs an enema each night. We have stretches and physical therapy he does daily to keep legs flexible (he's in a wheelchair) and arms strong. While Mason is just 2 now, we're already talking about his daily care activities with him and he's beginning to take an interest in the bathroom habits. We plan to have him take over catheterization around age 6, but to begin helping with it sooner.
    It's a world I never thought of until I had him, but he really does need to learn how to care for his body, to check his skin for accidental injury, and to get across his needs to doctors.

    1. I completely understand your feeling of not ever having thought you would have had to do these things…but good for you! It's so important for them - to foster independence and to know that we believe in them and trust them to take care of themselves. I see only good coming from it!

  4. My daughter has some seasonal allergies and at first I introduced her to nose spray and she didn't like it. But then she realized how much it helped and would ask for it willingly. Now that she is older she even does the netipot, her own idea!

  5. My daughter has some seasonal allergies and at first I introduced her to nose spray and she didn't like it. But then she realized how much it helped and would ask for it willingly. Now that she is older she even does the netipot, her own idea!


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