Tuesday, March 13, 2012

A tragedy, a response, and a promise to you

A news story is haunting me. If you're an autism parent, you probably already know what I'm referring to. If you're not an autism parent, you probably don't. If you haven't read the account, please do so.

A twenty-two-year-old man with autism. An exhausted and desperate mom. And a murder-suicide.

The headline is sensational. The story, as much as we know, is horrifying. And it makes those of us with kids who are younger terrified. We're grappling with the day-to-day struggles like choosing among therapies, finding peer play dates, grappling with a complex school system, and finding a place for our grief. But in the back of our minds, the really big fears loom: puberty and its hormones, our kids aging out of school and its daily routine, eventual aging and death of parents, funding care for the rest of our kids' lives.

The bottom-line fear as I read this story is: Could this mom's story be mine?

What gave me a little perspective was the response by Mama Be Good's Brenda in her post Don't Do This Alone.

She writes:
Don't try to solve your fears alone.
Before you ever get to that place where you say, "I'm so tired.  I can't do this anymore," go find someone.  Even if you say to yourself, I should be able to solve this on my own.  Even if you think, I don't want to burden anyone else.  Find someone and talk it out.
Maybe that someone won't have the answer to your problem.  Maybe they know someone who does.  Or maybe the next person will.  Alone we are mediocre problem-solvers.  We don't support ourselves well.  Together, we have a mindstorm of ideas and stories and people.
I don't want to minimize the fact that this mother killed her son. It's not excusable. Period. But I do see this story as a call to action to all of us parents, with special needs kids or not. Some things are too big to resolve on our own. There is too much pain, too many decisions, too much grief, and too much exhaustion. The only way to make it in this journey is to get real, starting with letting someone know if we are approaching our limit.

Here's what I can promise you:

1. I will let two people know if ever I feel those walls closing in on me. I will let someone know the severity of my pain right away.

2. I will continue to develop a tribe of friends, family, and peers on this special needs journey with whom I feel comfortable--comfortable enough to ask the big things, like watching my son while I get fresh air, coming over just to be with me while I cry in the other room, and especially getting together for mutual venting over wine.

2. I will ask my friends who are special needs parents how they REALLY are on a regular basis. No, I will ask ALL my friends and family how they REALLY are. I will share my list of caregivers, therapists, counselors, pastors--any resources I have--if they ask, and, perhaps more importantly, even if they don't but I sense they need it.

3. I will jump in with action, not just questions, when I sense it is needed. I will err on the side of action and worry about offending later.

As I think about this list, I'm struck with how much it applies not just to special needs parenting, but also to those with depression, postpartum depression, hushed-up life tragedies, and parenting in general. We've got to make our living a communal one. We have to share when we are not doing okay. And we have to make NOT feeling okay less shameful. The deep connections are what make us feel less alone.

What will you promise today?


  1. That is such a sad story, but what's even more sad is all the parents (incl. you) going through this every day with close to the that same level of desperation. Thanks for making the commitment to be real and to ask for help. Based on my experience, that the discomfort of the vulnerability and shame and self-doubt that accompany reaching out are SO worth what you get so quickly by doing so. I'm terrible at reaching out. In fact, I'm pretty much terrible at making phone calls to anyone, talking to cashiers, or going to any social event, period! So I get why reaching out on the "big" stuff when you're exhausted and constantly in caretaker mode would be ridiculously hard. I sure feel better when I know how you're doing. So thanks for all of this!

  2. I know--asking for help (or just a soup heated up at a restaurant) is not my favorite thing. We can do it.

    BTW, I'm dying to read the new book about introverts. I think it's called Quiet. Have you heard of it?



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