March 1, 2012

What Do We Tell Those Parents....

I sat near the back of the room. The focus of the workshop was children with autism, but the audience was not "my people" -- the presentation was targeted to educators, not parents.

I listened to the speaker, a man who knew me and my son. I watched the videos he presented. And I looked at the others in attendance.

Would one of these people be working with my son one day? Did they seem to be paying attention? Were they there because they cared, or were they merely fulfilling a continuing education requirement?

My son was in pre-school at the time. Four years have passed. In that time, I have had my world turned upside down, and I have struggled to prop it part-way back up. My mind, my memory, and my will aren't what they once were. But ....

I remember one of the final questions from a teacher in the audience so clearly. It went something like this:

I see parents who feel like they must be spending every moment of the day working with their autistic child. What should we tell those parents, the ones who feel like they need to always be doing something to engage and teach their children?

I turned my eyes to the speaker. When I heard his answer, I think I may have stopped breathing for a moment.

I would tell them that they are right -- that keeping their children engaged throughout the day is the most important thing they can do for their child; that, to the extent they can, they should be finding ways to teach their child and work with their child all day long.

The teacher, God bless her, pressed a bit:

But that is so hard. These parents put so much pressure on themselves.

The speaker nodded as if he understood, and followed up with:

Yes, it is, but the nature of autism is such that these kids need somebody keeping them in this world, as much as possible, all day ...

OK, so he didn't say anything ground-breaking. He didn't advise anyone to ignore their other, neuro-typical children. He didn't tell anybody to forget they had a spouse.

But he didn't mention those people either.
Nor did he acknowledge parent-fatigue.

I sank in my chair.

I watched the people in attendance gather their things and prepare to head to their cars, and I wanted to scream:

WAIT! But wait! That answer SUCKS. Seriously, it stinks! Don't say that. Certainly don't leave it at that. No, no, no, no, NO!!!

But I didn't. I just sank in my chair. I listened to the chatter from the teachers as they left the building, and I thought about how nobody in that room that day -- no matter how much training or education they had -- could really "get it." Unless they lived with autism day to day, they could never grasp the impact of autism on parents and families.

For a time, I was one of those parents the teacher described that day. I felt like every moment that my son was with me, I needed to make sure he was learning. I knew I couldn't spend hour upon hour "teaching him." But I believed that a significant portion of every day should be devoted to me trying to improve his concentration and pre-academic skills. And the rest of the day needed to be spent doing something "normal" -- something active and fun -- ANYTHING but stimming and otherwise "being autistic."

And what did I get for those efforts?

A lot of guilt about not focusing enough on my other child. A lot of resentment from a spouse who thought I was not devoting enough attention to my marriage. One heck of a lot of exhaustion. Oh, yeah, and my son still has autism.

Do I wish I had spoken up that day. Yes, I do -- although I would have been speaking to the wrong crowd. And so I say it now, to anybody who might still -- God bless them -- be reading. To every parent of a child with autism, and most especially to those whose children are on the severe end of the spectrum --

Give yourself a break.

Don't lose yourself, and don't lose your marriage. You are a parent first: NOT an ABA-provider, NOT a special education teacher. When your efforts to teach your autistic child start to leave you frustrated - when your efforts to "modify behavior" have you displaying your own autistic-like symptoms -- it is time to stop. Don't even let it get to that point.

Autism is so incredibly hard, and it is not your job to kick its ass. You can't.

So hang up the cape. Just be a mom. OR a dad. You know -- a person who is loving your child in this world, and in his world, as much as possible, all day ...


  1. I couldn't agree more. I remember when I got to a point that I realized I felt like I wasn't a mom anymore- I was a therapist and an educator- and I didn't like it. I wanted us to just have family time without me having some hidden agenda to hit a new goal or sneak in a discrete trial.

    I've also been to those conferences and they always make me so uncomfortable- I'm generally the only one there that is not only a professional but also a parent...

  2. oh, i felt sooooo exhausted reading that speaker's answer. we parents have enough to deal with - we don't need the extra guilt and added pressure. thank you for saying this out loud: it's ok to give yourself a break.

    leah, you should consider submitting this to the Oxygen Mask Project.

  3. I agree with you completely. I was not one of those super moms who was gung-ho in my child's face all day long doing everything i could. at that time, i just couldn't... call me selfish or depressed or young or naive back then. i wish i had done more, but i did the best i knew how back then, 15 years ago. I felt then, and still feel now, like i was a sucky mother bc i wasn't like "the rest of the warrior moms." i was just a human being, lost and confused and overwhelmed just doing the best i could. I wish i could feel like that was enough :(

    1. Alicia, you took the words right out of my brain. I still feel so much guilt about what I have not been able to do as a mom. And I feel tremendous hurt due to the criticisms of others--people who should have been kinder, but, instead, completely turned their backs.

      I am still learning to give myself a break, and to let go of all the hurt. It is not easy, but it certainly helps to have connected with moms like you. Your love for all your girls flows right off the pages of every post you write about them.

  4. Hi, Leah! Love this post and as with so many other things you and I share, can relate to it completely! After eight years, I worry sometimes that I have given up. But what do you do when you've tried to engage for years with a child that has absolutely zero interest? M is constantly pushing me away from him now, even when I try to give him kisses at bedtime. It breaks my heart, but at what point do I have to also realize that he is working very hard at school and he needs for me to just give him so space? Anyway, I hear you loud and clear. This is not something one could give advice on if one doesn't live it each day.

  5. I might be a little crazy (but then crazy people never know, do they?), but I sometimes find it almost relaxing to spend some time in Dude's world, rather than continually struggling to force him to conform. It also drives people nuts trying to figure out what the hell we're talking about. And I have to admit I get a certain amount of satisfaction out of that, too.

  6. We all do the best each time, armed with the information we have, and we move on. Sometimes I don't like being associated with "other" parents who have special needs children because my wife and I are not gun-ho either. We do our best, which is sometimes very good and at other times mediocre at best. We've accepted that we are flawed and so are others but we need to constantly remind each other and ourselves. Thanks for this insightful post. Tim