10.22.2013

Letting Our Autistic Kids Have Chill Time

One message I think autism parents don't hear enough: it is so important to make time and space for our autistic kids to be themselves. To do what they like. To be completely relaxed and unstressed. To not have other people making demands on them (even to help them), to not be figuring out how to ask people for help so they can do what they want to do. Legitimate, unfettered chill time.

We try to make that time available to Leo, as much as we can: going to the beach, hiking, trampolining, swimming, all things he loves. But sometimes he just wants to sit down, sing, and pound on a damn ball. So he gets to do just that. And this is what it looks like:




He's a happier kid and we're a happier family-of-his when he gets time to be his own happy autistic self. Being Autistic and mostly non-speaking in a world built for non-Autistics means Leo spends a disproportionate amount of his time negotiating, problem-solving, or figuring out how to communicate his needs -- and not always successfully, despite the best efforts of his family, teachers, and friends. And that doesn't include sensory assaults from bickering siblings, clothing, or loud noises. That doesn't include all the times we've misunderstood his needs without knowing we misunderstood them, because of the communication gap -- again, despite our best efforts. His life can be fairly frustrating and anxiety-ridden. He so, so, so needs time to relax and do what he likes.

This is why I think autism parents need to be extra careful to find as many ways to understand our kids as we can. We also need to pick our battles. I almost threw my computer across the room this morning in reading an autism parent's prideful recollection of how she spent hours torturing her teenage autistic daughter, demanding the daughter wear a specific item of clothing and insisting that she (the parent) was not going to "give in to autism."

The daughter did her best, used her best words, tried repeatedly to express her needs -- and ended up in tears because of a mother who would rather impose her will and "beat autism" than understand why her daughter didn't want to wear the item. Maybe the clothing was itchy, maybe the daughter's thermostat worked differently than her mother's, maybe her personal sense of style was being violated -- who knows? Certainly not her mother, who recounted her daughter's distress and attempt to negotiate at length, while crowing about not "giving in" for her daughter's own good. I am not naming names because this parent is self-righteousness incarnate as well as an Autistic-hating repeat offender and she doesn't deserve your attention. But it's important to spread the message that "my way or the highway" incidents like this are absolutely the wrong way to approach conflicts with an autistic child.

It's not easy to be Autistic, and it's not easy to be Leo, even though in general he's the happiest and most affectionate boy I know. So, I beg you, Please don't forget how hard it is to be an atypically-communicating person like my son. Please share the message that Autistic people of all ages deserve extra time and effort to ensure that you're understanding their needs properly, even if what they're doing doesn't make sense to you, even if you think you know better, even if you think it's for their own good.

And, if you have the time, please help share the message that happy stimming is a reasonable and healthy thing.

14 comments:

  1. powerful reminder for us as parents to do our best at loving our children unconditionally. thank you for putting into words the way i have been feeling about both of my children and their "therapies" lately. they are 3.5 year old twins, a boy and a girl, both struggling with communication. lately i feel as though many of the home ABA is actually borderline abusive how they attempt to teach my children. it's good to know that other parents are trying to really "listen" to their non verbal children and to be reminded of how important it is that our children are truly heard and understood.

    ReplyDelete
    Replies
    1. It is important. And we do have to monitor the therapies used to help our children, and ensure we're doing just that. I do have to say that ABA therapy is a very broad and slippery term, Leo has been in a thoughtful and supportive, custom-tailored home program for nearly 10 years now, and it has been transformative for him, because it's based on understanding *him*. But it has never been harsh, rigid or outrageously demanding like the original Lovaas model.

      Delete
    2. love the name of your page. Anna has been having adventures with her potty mouth mom for almost 39 years now. you are so right about acceptance first, respect always. thank you, said the mom who came from detroit and has 6 brothers, and who's daughter does NOT appreciate a potty mouth. :) Anna and her nephews & niece keep me in line. be blessed!

      Delete
  2. Thanks for this :) Have shared this and I think it's wonderful. Thank you for your words.

    ReplyDelete
    Replies
    1. Thank you for reading. Appreciated.

      Delete
  3. I love the video. Reminds me so much of my guy when he was younger. Shared on FB.

    ReplyDelete
    Replies
    1. That's really sweet. Thanks, Dixie.

      Delete
  4. I totally agree. I would even say that UNHAPPY stimming, as long as it isn't self injurious, or otherwise harmful, is also reasonable and healthy. All of us need to express our emotions, whether positive or negative. Some of us do that by speaking, some by writing, some by singing or playing musical instruments, and some by stimming. It's okay, and we have to allow people to express those emotions, even if "we" don't "like" them.

    ReplyDelete
    Replies
    1. Hi Jat, I agree. Specifically, my intention is to help people understand that Leo singing and pounding on his ball is an example of an autistic kid being *happy*, because too often it is the sort of behavior that parents are taught is wrong and should be prevented.

      Delete
  5. We all need time to doodle around and do our own thing. Thanks for the cute video and sweet message!

    ReplyDelete
  6. My son had very few stims other than fidget toys and so forth, but he did tend to twirl his hair, pull at his eyelashes (an ingrown eyelash isn't fun, so he quit that one on his own), chew his shirt, etc. But the one that could have caused major rifts in our family was sucking his finger. A close extended family member decided that this just wasn't acceptable after a certain age, and would shame him or even try to smack him for it. This was soon after the dx and early in my journey of learning, but I put a stop to it as soon as I knew, and tried hard to explain why I felt that this was harmful and probably wouldn't even work. I have better language (and references) for my beliefs now, and things would have been less tense, I believe, especially if I had known videos and blogs like this existed. Lots of youngsters are going to be helped by people like you. :)

    ReplyDelete
  7. when my son had a really GOOD day at school, I know it costs him a fair amount of effort to cope, to keep it together, so I always make sure not to fall into the trap to try new things or be too demanding on that afternoon. also, since his particular way of happy stimming - running, jumping - is classed as disruptive or dangerous in class, i try to allow for it as much as possible.. (although it's sometimes a bit hard to have conversations with a bouncy running child..)

    ReplyDelete
  8. An important lesson I've learned as a single mom of 2 - 1 regular kid and 1 with major sensory processing disorder issues - is the pick your battles. If I battled my sweet, shy girl or my gregarious funny boy on every damn thing that wandered through my head, we would be constantly at one another's throat and our relationship and household would be in shambled.

    ReplyDelete

Respectful disagreement encouraged.

Related Posts with Thumbnails