special needs parenting

What Does Real Self Care Look Like When You Parent Complex Kids?

I’m getting a mani-pedi today. If there’s a poster for self-care a mani-pedi would be on it. It’s relaxing, makes you look better, and it’s a couple hours away from the grind. The bonus is that I have a couple of gift cards to offset the cost so it’s not even a ding on the budget.

As spring arrives I will take pleasure in my beautified bare toes and most certainly ruin my mani by the end of the day, but that’s not the point. The point is the break, the focus on myself. A much needed boost to my spirit.

But is it ever enough?

I believe in self-care, truly I do, but (you know what they say about “but”, ignore everything before it) it’s like offering a candy bar to someone suffering from malnourishment. It will taste great and give a momentary pause to the pangs that rumble nonstop, but it will do nothing to correct the underlying void. A malnourished person needs not a treat, not a single meal, but access to long term sustinence.

And the full time parent of complex kids doesn’t need a mani-pedi. It’s a candy bar that will only quiet the pangs momentarily.

What is needed, truly needed, by parents, especially the primary parent of complex kids, is much wider and deeper than a few hours of self care can begin to address. When you consider that moms of autistic kids have stress levels akin to that of combat soldiers it becomes apparent that a brief outing isn’t even beginning to address the issue. It’s a bandage on a hemorrhage.

What is necessary is wraparound services. Respite, extended school years and more.

We recently found out that Ben was approved for the Children’s Waiver Program. This program will provide for him all the benefits of Medicaid, despite our income being over the threshold, as well as respite, Community Living Services (someone to help Ben learn how to do things that most people take for granted, like tolerate an outing to the grocery store). When getting the news of approval I felt like a someone took me by the hand, showed me a farm with a garden full of bounty and a barn full of animals that, if well cared for could nourish our whole family indefinitely.

I’ve been told that the church or private charities should step in. Idealistically I agree wholeheartedly, but I have yet to find a church or charity that is equipped and capable of stepping into the enormous gaps that families like ours have year after year.

It takes interventions like the Children’s Waiver Program to make a difference in the lives of families like ours, there’s really no substitute.

I’ll go get my mani-pedi today, and it will be a treat, but it won’t satisfy. It won’t fill the void and I’ve learned not to expect it to be enough. I’m beyond grateful to anticipate finally having the resources we need, but at the same time, I look at so many other families I know, moms who live as combat soldiers who need it just as much as we do.

We need to do better.

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