On not doing it all

September 1, 2010

I almost forgot to put on Chloe’s eye patch today.  Again.  For two hours every day, she’s supposed to wear an eye patch over her right eye in order to strengthen her left eye.  When I say “eye patch,” you are probably thinking either of a black plastic thing on an elastic band, or a flesh colored bandage, right?  Well, Chloe’s eye patches are more like accessories.  They come in several colors and styles: blue and pink with flowers and smiley faces, purple and pink with bows and lipsticks, and of course, pink camo.   It’s always pretty exciting to see what the Patch of the Day is, when I remember the damn things.

It’s hard to fit extra chores, even little ones like sticking on an eye patch, into our day.  The eye patches are scheduled right in the middle of snack, homework, and antacid medicine, and I have to put it on early enough so that Chloe can wear it for an hour before we take it off during therapy.

The thing about having a kid with special needs is that you can pile up a huge to do list very quickly.  When Chloe was a baby, one of the doctors we saw said to us, “Don’t  worry about being therapists; your job is to just be parents.” Nice idea, but it’s easier said than done when the occupational therapist wants you to do 10 minutes of Wilbarger technique every two hours, the physical therapist recommends joint compressions twice a day, your relatives are going on about something they heard about infant massage, the conductive ed people think she should be sitting on a stool holding on to rings while you eat dinner (never mind that your home and your dinner are not designed to accommodate this type of thing), the ABR people encourage you to get in 3 hours of therapy a day, the neurodevelopmental pediatrician wants her sitting up in leg braces for at least an hour,  her speech therapist has just taught you how to do a complicated regimen of cheek stretches and nuk-brushing, and here comes the eye doctor with the patches.

I learned years ago to be picky about what we committed ourselves to.  First of all, a lot of that stuff just isn’t worth the time for a kid with Chloe’s degree of disability.  When she was a baby, I put a lot of faith in the poking and brushing and stretching, but as she got older, and her disability got older right along with her, I started giving things the week-long test.  Try it for a week, and if the hassle factor is greater than the results, let it go.

These days, I limit my time as a therapist to an hour or two of ABR, and some oral stim (though most parents call this “toothbrushing”).  ABR works, and you can do it with the TV on, so everyone wins.  Sometimes, when we go to doctors, I get wrongly accused of being the kind of parent who “does a lot at home,” and I feel a little guilty.  But really, I do a lot.  I make sure Chloe gets an hour to herself every afternoon to play with her dolls.  I keep our dinner time relaxed and therapy-free.  I send her to school, where she can develop socially and mentally, even though it means a lot less time for therapy.  And occasionally, I even remember the eye patch.


4 Responses to “On not doing it all”

  1. Lisa Says:

    Just read this, and it’s so exciting b/c 1) It’s my first notice via e-mail that you wrote something since I signed up, and more important 2) My mom and I were JUST talking about having too much to do and not overscheduling kids and life. What you wrote fit perfectly with that. Even though the challenges we face are different in specific ways, the general concepts are very similar: how to find the balance between educating and just enjoying your child and letting them be. One of the things I love most about your blogs and really everything you write is that I can identify with it. Typically-developing children/children with disabilities–all are just children. And we’re all the moms and dads trying to figure what’s best for them and help them figure out what’s best for themselves. I’ll stop now before I get too “Kum-bay-ya” on you. But know that you ROCK, and I cannot wait to read your next post!!!

  2. […] She understands that we can’t do it all. […]

  3. this guide Says:

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