The Special Needs Child and the Working Mom

by Jo on March 20, 2012

An article published the other day on reuters.com revealed that moms who parent a child with autism are approximately 6% less
likely to have a job, work an average of 7 hours less per week, and earn less than half of their counterparts: working moms without special needs children.

It may be news to some, but it’s certainly not news to me, and like most statistics, there’s a story behind each one:

I used to be a full-time Kindergarten teacher. I believe the Universe brought that job and I together at the most amazing time in my life. I had been sober a little over a year and was ready to become a productive member of society. Between Andrew’s half-day class at the local public school and his afternoon therapy program, and Ian attending the preschool on the same campus where I taught, I was free to earn a (somewhat) decent paycheck and spend some quality time AWAY from my children.

Every morning my house was filled with the chaotic sounds of a working mom trying to get her kids ready for school on time. Every day my mind and heart took turns basking in the love I had for my job and the guilt I felt for having something of my own, completely unrelated to autism or special needs or household chores. Every afternoon I came home to frantically cook dinner in between parenting training sessions with Andrew’s therapist and washing Ian’s favorite Power Rangers costume so that it would be ready again for the next day.

And in the midst of all of that chaos and the never-ending to-do list, I was happier than I had EVER been. Truly.

It wasn’t lost on me, the irony of it all. Here I was, in love with a job that entailed I take care of OTHER people’s children for six hours each day when I had plenty of care-taking going on in my own home. But the truth was that for every failure I experienced at the hands of a missed milestone or behavioral challenge with Andrew, I felt equal success in my classroom every time I was able to teach a child to read; or at least that boogers weren’t a food group.

My classroom was my sanctuary. The glitter, the paint, the uncapped markers. They were all signs that I was doing something in my life BEYOND what was expected of me as Andrew’s mother, something BEYOND the IEP’s and Dr. visits. I was exhausted at the end of the each day but every morning I woke up recharged, ready to face my life with renewed vigor. I think working – especially because it was at a job I was crazy about -ultimately made me a better mom and a better wife. I don’t presume to speak for others, but for me, working just WORKED.

Eventually though, reality set in: I began feeling that I was doing a whole lot but none of it very well. I felt two steps behind in EVERYTHING. Three years into my teaching gig and the pressure of trying to “do it all” started to show, my carefully constructed world fraying at the ends. I became scatterbrained and moody. My vigor gave way to a semi-permanent “BLAH” and I half-assed and cut corners wherever I could. My passion for my job turned to resentment; I had a child with autism to raise, for heaven’s sake! What was I doing laminating holiday-themed art projects and organizing playground games? Who was I kidding?

I knew I had to make a change, knew I needed a compromise. But before I could figure one out the universe stepped in once again and this time, it wasn’t nearly as pleasant. Because, as you may already know, the universe rarely compromises.

In the last days of August 2010, I received a phone call from Andrew’s pediatrician. He had tested positive for Cystic Fibrosis, a shot in the dark test we agreed to do to try and determine why he was failing to thrive. I sat at my kitchen table that afternoon and while the earth stood still I shook from the inside out. And in a heartbeat I knew I had no other choice but to quit my teaching job.

I walked into my Director’s office a few days later and as I gave my notice, my hands trembled and I cried like a baby. As difficult as it had been trying to accomplish so much, my job had provided me with a reprieve, an alternate reality to the one I lived when I got home. I’m not saying my life at home was terrible, but my job gave me…..balance. When I walked around that campus, I was Mrs. Ashline, Kindergarten teacher, not Jo, mother of a child with autism, who sometimes has to use a syringe to feed her son dinner and is overwhelmed and unprepared for the journey that lies ahead.

Was I running away a little bit every time I unlocked my classroom door and organized my books by reading level?

Y0u bet your ass I was.

I see that now more than ever, as I work from home freelance writing from my kitchen table, available to be there for Andrew whenever he may need me. Just this month he came down with a rotten flu and has been home from school for almost two weeks. I didn’t have to answer to anyone but myself and being there for him without reservation , without a boss breathing down my neck is more important than some paycheck or teaching a unit on Eric Carle.

Oh. But how I love me some Eric Carle!

Doctor appointments are scheduled around Andrew’s needs and not around my work schedule. If his teacher calls with a request to bring him a new pair of pants at school because he had another accident and used up all of his extras, guess who can be there in a single bound? Okay, maybe not that fast but as fast as my station wagon Volvo will get there (which in all actuality is kind of the opposite of fast now that I think about it)

And I know that this is how it should be.

But, and it’s a very important BUT: that balance thing I talked about earlier? It’s muy muy importante you guys. If you’re a stay-at-home parent of a child with special needs, I know this probably sounds like a foreign language, but you need something you can call your own. It doesn’t have to be a paying job that requires you commit to a specific time frame. We all know that predictability is something we covet but rarely experience.

Still, you have to carve out time to force yourself out of those yoga pants. You have to have face time with society once in a while or you risk slipping through the cracks, slowly at first so that it’s barely noticeable, but then one day you wake up and the idea of taking the clothes out of the washer and putting them into the dryer just feels so HARD and IMPOSSIBLE.

It’s called depression, and it’s sneaky and cunning and it won’t go away just because you ask it to nicely. It’ll make a full time job look like a walk in the park and pretty soon you’ll not only be unable to care for your special needs child, you’ll be unable to care for yourself.

Me? I think I’m trying to find the balance one day at a time. I make a point to talk to at lease ONE person everyday about something completely unrelated to autism or special needs or even parenting for that matter. I don’t think there’s anything wrong with that. In fact, in order for me to be successful as a mom it’s crucial. It’s why I can withstand those days when I wish I still had the keys to my old classroom and a curriculum heavy on the fun that I could hide behind.

Like most things in life, though, this balance thing is part of the journey and not a destination. Some days are better than others. Today, I write to you in a frilly Ann Taylor shirt and black dress pants after having met with a professional who wouldn’t know a sippy cup if it lodged itself in her eye. Tomorrow I may be lucky if I brush my teeth. Exciting, right?

Which reminds me. I hear Andrew in the other room and it sounds like he needs me, STAT.

So I’m gonna go ahead and hit publish and hope you take my advice to heart.

Find something of your own, something that will set your soul afloat and keep your feet firmly grounded.

Your kiddo is counting on it.

{ 5 comments… read them below or add one }

Britton Minor March 21, 2012 at 7:32 pm

Typically I read you in the privacy of my home. But of course, not today, when you write something that has me crying. Today I am in a public place, and fortunately nearly everyone around me (except for those staring at me) are busy doing their own thing. Sniff…sniff, wipe…wipe.

I think of you often–every single time I complain about my kids either doing or not doing something, actually-and try to imagine how hard your every day is. I can’t imagine it–as you know. But I do applaud and support you from the bottom of my heart dear one.

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Kat March 21, 2012 at 11:33 pm

@Britton, yeah Jo can do that to you sometimes.

This is good message to all moms. For moms of special needs children its even harder to not get stuck in a rut and stuck in a “special needs world”. I recently started venturing out and trying new things and once I got over the guilt of having some “me time” I felt rejuvenated. We all need and deserve a break. In the long run the entire family benefits from it.

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Sarah March 24, 2012 at 5:50 pm

Jo, you are SOOOOO right on this one! I was a teacher for years, had a couple of kids, and decided to stay home for two years and then go back. I was so looking forward to the time off to be with my kids, and it truly was a wonderful experience. Right around the middle of year one off, I became pregnant with our third child who ended up having special needs. There went that plan to go back a year later! I ended up staying home five years total, to the point where we lost our house because I needed to be home with her and we just couldn’t do it anymore on one income. This past year, with her in a five day class and my mom at the ready to babysit afternoons, I headed back to teaching. IT IS HARD to be at work all day and come home to a crazy household, but at this point, I don’t think I’d go back to staying home. I love that I can go to work, help our family out financially, and be someone who helps other kids as well (special ed teacher, by the way!) It is very fulfilling, even though I’m exhausted. I know it won’t always be this exhausting, but I’m ready to keep it up. Thanks for the post, and keep up your work because reading it helps to keep me sane :)

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Dee March 31, 2012 at 3:29 am

I haven’t showered in ten days. In another world I used to be a co outer teacher to ex-cons. Now I’m an ABA therapist (PRT natural style), mom, chief, researcher, and tired, tired person. I hear you. Unfortunately I need rent money. And money for the medicine that my son requires. I’m at a complete loss and hoping I win the lotto tonight. Sounds like a joke. Doesn’t it?

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Dee March 31, 2012 at 3:30 am

That should read computer… At least I have an iPad!!

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