Tuesday, July 01, 2014

The 18-Year Maternity Leave

As you may already know, this past year I started working as a classroom assistant for a school for students with very unique special needs.  I thought I knew the special needs world, but I'd never met anyone like these kids.  What makes these kids the way they are? I wondered.

What would really let me work with the kids more closely would be a Masters Degree in Psychology or mental health or counseling.  Something like that.  I found a couple of online schools with good Masters programs.

I have been looking at different online job postings to see what kind of options there might be and I see a lot of exciting job opportunities.  Not all of them were at schools.  Meaning, most of them will require my being available to work every day, all day.  Not just when the boys are in school.

I really want to try one of these online grad schools, but I also want to really justify the expense beforehand.  I have to make sure that 10 years from now (when the boys will be 19 and very near the end of their schooling, if not AT the end) we won't be paying off school loans for a degree I can't find a way to use.  How do other people with children with disabilities manage to work outside the home?

So I posted a question in the Fragile X Facebook group to its over 2000 members:  How do you find child care for children with disabilities, especially those who are too old for traditional daycare?

I really thought there were some options out there.  I expected to hear "we have a community organization that helps....." or "there's a program that finds activities and proper care for special needs children..."  But instead, I heard "I am lucky enough to work from home." or "my spouse and I work opposite shifts so one of us is always home." or "I only work part time, while the kid(s) are in school."

Instead, it sounds like almost every special needs parent has to find a way to be home with their kids.

When you go home with a newborn, you know your life has changed.  You know nothing is about you anymore.  And everyone says, make sure you take care of yourself.  Make sure you make time for you.  And it's hard, at first, but very gradually, that infant grows into a child that can feed himself, identify when he needs to use the bathroom and go do his business himself, clothe and entertain himself and watch out for danger himself.  Eventually, you get a little of your own time back simply because your typically developing child turns into a person who takes over the responsibility for most of his aspects of daily living.

When your child has a disability, someone has to pick up the slack for whatever area the child is disabled in.  When he is mentally disabled, someone else has to be his common sense.  Someone else has to be consistently conscious and in charge of when he needs to eat, go to the bathroom, change clothes.  Someone else has to be alert for danger.  Just like you would for an infant.

It's like an 18-year maternity leave.  It's like from the moment you go home from the hospital with that baby, you're never going to get 100% of yourself back.  At least until you find someone else to care for them.  Because they aren't going to ever be responsible for caring for themselves.

From the responses I saw on Facebook from my fellow Fragile X parents, it looks like most of us will care for our kids with disabilities full time (aside from those few hours they are in school, but still being on call during that time) until they are adults and we find some program or group home we feel we can trust with our babies.  

In fact, many don't find a home for their children until the kids are well into their 20s or older - that is, until they are absolutely unable to take care of them anymore, and old age forces them to trust outside caregivers.

I don't mean to be dramatic with my 18-year maternity leave comment.  But often I'm struck with the similarities between the way life is when you have very small children - how they take over your entire consciousness, all your attention and focus, because they can do so little for themselves - and the way life is with children with disabilities.  They are like toddlers who will never grow up.  Mine are nine years old.  Most nine year olds can walk from the car into Target without having their mom hold tight to their hands.  Most can get through a short shopping trip without having to distract themselves with iPads.  Most won't constantly, impulsively, attempt to run off and wander the store.  Most nine year olds aren't riding in the cart anymore.

Most are buckling their own seat belts without help.

Taking them to the store at age nine isn't any easier than it was at two.

Most moms at this point would feel obligated to start reassuring the reader than of course they love their children and wouldn't trade them for all the typical children in the world..... I don't.  I don't think anyone doubts I love my kids.  They are certainly loved and wanted.  I just didn't anticipate the level of vigilance I'd have to keep up for so many years.  For, possibly, forever.

So do I attempt graduate school or not?  I still don't know.

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