The 3 Biggest Mistakes I've Made as a Special-Needs Parent

Amy Corbett Storch Mom Moment
11

mom boy at beachWhat? Mistakes? Me? MOI? I am offended at what that title is incinerating. Insinuating, I mean. Whoops.

So mistakes. We've all made a few. I'm NOT writing this to beat myself up or to elicit a ton of "but you're still a good mom!" comments, but just to lay out a few of the lesson I've learned the hard way -- about the system, but mostly about myself -- that now play an active part of me being an even better mom.

1. Allowing services to cease because people were telling me what I wanted to hear. I know I've mentioned this about ... oh, five gagillion times already, but Noah "graduated" from our county's Infants & Toddlers program before he turned 3, before the required transition testing and evaluations by the school district ever got a chance to happen. They told us his speech was "fine," after giving him some standardized tests for articulation and comprehension. My lingering concerns about his OT needs and other speech-related "quirks" were brushed aside. He was fine, he'd catch up on his own, he's progressing just beautifully.

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I know this should be THEIR mistake, not mine, because they were the "experts" and I was the rookie parent in over her head, who had no reason to think that they were wrong, but ... as unfair as it is, special-needs parenting doesn't work that way. I KNEW there were things still going on. I KNEW. And every one of those "things" ended up becoming a "major thing" in just six months' time, when the school district representatives looked at me from across a table, absolutely dumbfounded that my child had been allowed to fall through the cracks.

He was "allowed" because I, his mother, signed the consent form against my better judgment, because it was easier and happier to believe that everything was fine than push back and be possibly viewed as a neurotic mother who makes a big deal about nothing.

2. Losing my temper. I don't even need to elaborate on this one. There have been countless times when my son needed something from me: extra patience, understanding, the ability to know When to Let the Issue Drop Already, the music turned off, a brushing protocol, SOMETHING other than what he got, which was me yelling, snapping, yanking on a hand in a parking lot because COME ON STOP IT WHAT IS YOUR PROBLEM.

It's bad enough when you lose your temper over "typical" kid stuff. But I can say from experience it feels even WORSE when you realize you've just lost your shit over something your child can't help or control or even understand himself.

3. Not taking care of myself and my needs in a quest to be Supermom. Hey! Feeling guilty about that time you lost your temper? Try making up for it by deliberately arranging your life in a way that all but guarantees it will happen again.

I worked from home from the time Noah was a baby, and all through his time at Early Intervention and the birth of his brother and ... well, I STILL work from home. I write, on average, about 12 to 15 different columns, blog posts, and freelance pieces a week. (Not to mention hundreds of emails.) And and I did it without part-time childcare until this past January. As in 2010.

This mommy martyrhood is not just a special-needs thing -- I was trying to do too much long before Noah ever missed a developmental milestone. But as he did become more challenging for ME, I got overly protective, and convinced myself that I was the only one who could really care for him. (His first preschool teacher -- a disaster -- simply cemented this belief for me, that the world didn't understand him and was out to get him and I simply could NOT leave him in the hands of someone like that again.)

You know how this ends. We all suffered. My work quality and sanity were all over the place; there were many days when Noah watched too much TV and didn't get his Sensory Diet or a visit to the playground. Sure, we all have days like that, but it was tough for me to admit that Noah needed more than me. Better than me. Or that ... I wanted a break and deserved to have boundaries around my work and parenting.

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It's only been in the past year that I've taken MAJOR leaps in this area: I have friends with special-needs kids. Real outlets and resources. I have dedicated child-care hours and dedicated time off for playdates with those friends and their kids. I no longer feel guilty about asking my husband to work from home or to use a babysitter just to go to the dentist without a child or two in tow. If Noah has a bad day, he gets extra books and cuddles ... and I get extra time in the bath and an extra glass of wine. When things sort of suck, I have people to call or email to commiserate about the things that suck. Or I go out for dinner with my husband and some friends and talk about everything BUT the things that suck.

I know I can't swear that oh, I shall never make these mistakes again! I will never regret another course of treatment action or lose my temper or bite off more than I can chew at work or home again! That's ... yeah. But looking at these less-than-optimal moments helps me balance out that drive to be my son's own personal superhero with my own personal bits of kryptonite.

 

Image via © iStock.com/baona

 

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