digging in

Yesterday morning, Luau wrote the following. Now, before you go sharpening your keyboards to lambaste him for writing it and me for sharing it, please remember that this is just the beginning of the story. (Note: I’ve edited it very slightly to make it Diary friendly.)

 

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{image is a photo of Brooke sitting on the rug next to her stuffed Buddha and assuming his meditative pose}

Can you say that with your mouth closed, please?

-Brooke (whenever she is tired of hearing what you have to say)

***

It feels like a lifetime ago. We were new to the world of autism. Brooke had just recently been diagnosed and both Jess and I were reeling.

We didn’t know jack %&$!.

We began to work with a professional, a person with advanced degrees, years in the field and promising advice. Some of what he advised us to do helped make life easier, easier for Brooke, for Katie, for both Jess and me. The advice was delivered with the authority of someone “who knew”. There was never any doubt about whether the advice was right or wrong.

Looking back, I realize that I saw what stuck, ignoring what didn’t.

A couple of years later, this professional welcomed his own baby into the world. Two or three years after that, the baby would be diagnosed with autism. The professional with all the right answers was completely lost. The advice so authoritatively given, suddenly didn’t seem to work or make sense.

To the credit of the professional, he admitted as much.

***

I tell this story not to put down the professional that had worked with Brooke so many years ago.

No, the professional always had the best intentions for Brooke at heart.

And by no means am I advising any of you who are parents of autistic children to ignore the advice of the experts and professionals you may have surrounded you and your family with.

The reason I tell this story is because too often I see advice given to parents, whether via the blogosphere, Facebook, Twitter or whatever, by folks who don’t…have…kids.

Your child won’t eat A, B or C? Just do this.

Your kid does yadda yadda yadda in public? Obviously you aren’t doing this simple thing.

Your teen is misbehaving? Just say this.

Your child isn’t active? All you have to do is be a good model.

You kid is overweight? Just help him make better choices.

I’m sorry, but if you don’t have kids, you can give advice until you are blue in the face, and I really don’t care if you have a bunch of advanced degrees from a bunch of Ivy League Schools or whether you’ve got an AA from an unaccredited Bible School or whether you worked as a nanny for a number of years, you just…don’t…know.

***

Here’s some advice if you aren’t a parent, and you have some great pearl of wisdom for those of us struggling with our parenthood:

Go ahead and say it…just do it the way Brooke will sometimes advise me on how to tell her something – Can you say that with your mouth closed, please?

I got halfway through the post and panicked. I called Luau, nearly breathless. “Hon, I’ve only read part of you r post,” I said, “so forgive me if you covered what I’m about to say in the second half, but I couldn’t take the chance. You can’t tell people that if they’re not parents they can’t offer advice on parenting autistic children. This is the crux of a lot of hurt between parents of autistic kids and autistic activists who are told, wrongly, that they have no right to speak about parenting autistic kids when they have EVERY right to speak about it because they know what it is to BE our kids and .. ”

He cut into my words, tumbling as they were on top of one another.

“Got it.”

“Please, please change it,” I said, “These people have worked so hard to be heard and for us, of all people …. ”

He cut me off again. “I totally hear you,” he said. “Let me hang up so I can take care of it.”

And he did. He changed changed the post, most saliently by adding the following, just like this, in bold, italic letters.

The only exception to this, and this is important, is if you have lived through or with the particular subject you are talking about.  Case in point, autistic adults have every right to talk about what worked and what didn’t work for them as children.  Extremely Tall or short people can talk about what it was like growing up in a house that may not have made every day activities easily accessible.

It may or may not have been at this point that I began to laugh. Hard. Perhaps it was simply the release of the pressure valve, but dear God, Really Tall People? I texted him, still laughing.

Extremely tall or short people? LOL

Deaf to hearing parents?

Gay to straight parents?

No, I’m going to go with really tall.

LOL

To his credit, he wrote back that he had chosen something purposefully innocuous to ensure that he didn’t inadvertently equate autism to a disease or otherwise paint it as a bogeyman. And for that I was grateful. But still laughing. (And, at five feet tall, I’ll happily offer myself up as a resource if anyone wants to talk about raising vertically challenged kids. Tip: Don’t put things they need on top shelves and, unless they really, really want to try shooting from the foul line, don’t push basketball. You’re welcome.)

The closing paragraph now containing, “… or do not share the fundamental trait of the child or topic in question,” I exhaled. And then I texted him again.

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{image is a screenshot of my text conversation with Luau, transcribed below and shared with his permission.}

 

Perfect.

Thank you for listening.

It’s such important stuff to the autistic advocates. With good reason. They’re told to shut up all the time because they’re not parents.

Which is completely *&$%ed.

To which he wrote back, “True.”

And then I wrote more words, cause, ya know … words …that’s what I do.

But it’s really easy to get defensive and dig in your heels. I see it happen all the time. So I’m really grateful to be married to someone who doesn’t do that. 🙂

It’s some damn good daddying.

To which he wrote back, “I dig my heels sometimes 😉 Thank you though.”

And I wrote even more words, because, well, see above.

Okay, I was trying to be nice. Go with it, ass.

Yo which he wrote back, “Haha. Love you.”

And I, well, more words.

“Except for the times when you are a stubborn mule, I’m very grateful that you don’t generally put ego before sensitivity.”

Better?

Love you too.

We’re all stumbling through this minefield together. From where we stand, even the most sensitive, caring, respectful parents can step smack on a mine without any idea what they’ve done. But the good ones, the ones like Luau, stop, listen, and, when appropriate, change course before they blow us all to smithereens.

Love you, babe.

And for me, for Brooke, for all of our autistic friends …

Thank you.

 Edited to add: Please, please note that following feedback from readers this morning, both Luau and I saw that this post could very easily be read as a wholesale dismissal of professional opinion, something that neither of us even remotely want to be implying, no less outright telling you, is appropriate.

As I suggested in response to comments on Diary’s Facebook page this morning, and have confirmed after speaking with Luau, he was addressing the sanctimony which we, as parents of an autistic child, often face, especially online, by those who are convinced that they’ve got it all figured out and who fluff their feathers in righteous indignation when it is suggested that perhaps it’s all a little more complicated than their formulaic approach might imply.

I want to be VERY, VERY clear that, as I’ve said a thousand times before here, both Luau and I are deeply indebted to all of the professionals who have worked with Brooke over the years, none more than the wonderful, dedicated and talented educators with whom we have shared ideas and for whose insight, advice and perspective we are incredibly grateful.

I was so wrapped up in one aspect of the post that I missed that entirely, and for that, I apologize and sincerely thank those who pointed it out.

 

13 thoughts on “digging in

  1. Hah! At 5’1, I there’s droves of unused real estate in my house! Hubs is very good about getting things down, when, by some mistaken circumstance it does get used… It’s in the contract….

  2. This is tough for me. As a person who doesn’t have kids, I try to keep my mouth shut unless I’m directly asked my thoughts.

    But as a person with some experience working as a massage therapist, working with kids with autism and their families, I can tell you this: Sometimes I have ideas that can be worth your time.

    Sometimes I can teach you 5 different ways to rub a back to help your kid get to sleep. Or how to adapt a seemingly impossible meditation technique into something your kid will actually do.

    Of course I support the idea that people IN THE TRENCHES get to call the shots.
    And of course I know the feeling of condescending asshats telling you what to do when you KNOW they have no idea what it’s like to be in the middle of a restaurant when a meltdown occurs.

    But please remember that objectivity is a really useful tool. Sometimes an outsider can help you, and have your back, in a way no one else can. So maybe consider just avoiding the ego-driven obnoxious non-parents. And know that the rest of us are here to back you up whenever you need us.

    xoxox

    • Can you pretty please email me your tips for massage to help a child sleep?

      I see what you are saying as different then what she means. I love it when my sons therapists offer advice on problems my son has. Now when someone comes in and tells you if you do xyz then d will happen, they just don’t know, they think they do but they don’t. Plus while most of these professionals mean well they GET TO GO HOME AT THE END IF THE DAY. When you live, eat, and breathe autism hell some days wear it, it is different. And quite honestly your view will change if you do.

  3. Ha ha, made me laugh too! Although I will say, common sense should always prevail, and whilst we should listen to what has or hasn’t worked for autistic adults, or for any other parents, we should also always bear in mind that that is what did or didn’t work FOR THEM… that is to say, it doesn’t mean it will work for every other child with autism. Parenting is not easy, but the vast majority of us do it to the best of our ability and in situations which are unique to us. It’s OK to ask for help and advice, but it’s not OK to be talked down to as if we’re doing it all wrong. Each situation needs to be looked at individually (boy, that doesn’t help anyone much, does it?! Sorry…). Thanks for another great post, and for the fact that you always take the time to try and explain your words. Your daughters are beautiful btw 🙂

  4. This is so interesting….. I have worked in pediatrics for the past 15 years. Before I had kids, I counseled thousands of parents (according to straightforward pediatric protocols) about how to handle their sick children, how to handle those new babies, what to do with certain behaviors. I was fairly confident that I knew how to handle any situation with a child….. until I had my own. And yes, he is autistic, and had massive sensory issues from birth. Suddenly I was the one asking the questions, being counseled by my coworkers, being placated by the MD’s, and none of it was working. I pulled out every trick in the book that first year, trying to figure out how to make this baby happy. Everyone was sure they had the answer for me, but they didn’t… nothing seemed to work. I even had one of the MD’s (who swore he knew a lot about autism) basically tell me that I was a moron… he would be fine by the time he turned 2. I felt like my own profession was failing me. That’s the problem though…. as professionals, we all were VERY confident that what we counseled our parents to do would work. We were never there with them in their homes to see the trial and error… we doled out advice, and then got to hear about the end result. It kind of takes the importance out of the “process” that parents went through to get that end result. As a professional, I saw the end result, and as a parent, I lived the “process”.

    Not to say that I continued to be failed by my profession. It took instinct on my part as a parent to go outside of their comfort zone and get evaluations, seek therapies. Most of his therapists in the early days were young and childless, but oh, they did the most good for my boy. To this day, the OT who had the biggest effect on him is childless, but she has this amazing ability to see what these kiddos are going through, and how to help, and she gives wisdom that is somehow always pertinent, and that gives results.

    And me? I have learned to be extraordinarily patient with those people who don’t get the “process.” My instinct turned out to be far more useful than anyone’s advice.

  5. So this was a hard post to read. I have several degrees, autism related, and years later my child was diagnosed on the spectrum. For me (just speaking for me) seeing things as a parent versus educator was very different. Possibly, this is why doctors do not treat their own children. (And, by the way, a neurologist friend of mine had a daughter who developed a seizure disorder. She totally lost perspective, too. I do believe that you can get to the point were it is not a good thing to know too much about a subject.) I fully admit I lost all perspective. It was impossible not to lose that perspective and I had to learn to forgive myself and move on. I needed other people to help me and my child. I admit that and don’t feel shame in that. I would like to think that I was always respectful of my students and families before my child was diagnosed, but certainly after the diagnosis, my interactions had a more vivid color. I officially knew what it was like to sit on both sides of the table, so to speak.

    There are professionals that my child works with that do not have a child with ASD, but seem to be creative in figuring out solutions and there are professionals that lack that creativity, regardless of their background. For me, and in my experience, it seems that professionals who don’t give up or keep looking, keep asking seem to be those who have had someone give up on them and did not appreciate it — for a variety of reasons — health, learning disability, life circumstance. Whatever. Those survivors who have true grit and keep trying and thinking outside the box have made the most difference not only to me personally, but to my child.

    That being said, I totally understand the desire to not want advice from someone who hasn’t lived it. I’ve heard some pretty insensitive things said at IEP meetings (you know — “All kids do that!”) but I thought they were pretty lame things to say even before I had my child.

  6. The explanation/ clarification of the original post is what I took from the post to begin with. :).
    We try to listen to all advice, really. But sometimes you run across that person (friend,family or professional) who puffs out their chest with the attitude of knowing it all and, yes, you want tell them to “say that again with their mouth closed”. And, no, I wouldn’t add the “please” lol.
    Maybe it’s not the advice but the way it’s presented. It could be the best idea or perfect solution but it’s not going to get heard if it’s said with arrogance and pressumption.

  7. My oldest son is 6’9″. He passed by his momma (a pretty tall 5’9″ lady) BEFORE he turned 8. We have spent our lives accommodating the environment for him: Beds, furniture placement, light fixtures and getting used to things we couldn’t change: shower heads, ceiling heights, cars/airplanes……
    My third son has ADHD and autism. He is a delightful, joyful being who keeps me on my toes for EVERY verbal utterance (accuracy and “but you said…..”). I love to watch him absorb the world like he is Neo in the Matrix.
    I can speak fluently on what worked for us with either son. : ) Please ask!! It has been a delightful journey.

  8. Right now the Wilson’s, thank God, are riding a great wave. May it always be so.

    So I understood this post from that context – that when things are going well, we tend to pat ourselves on the back. When you have more than one child (as many do) it really becomes obvious that everything “good” about them is not thanks to we parents and everything “difficult” about them is not thanks to us, either:) It’s freeing.

    Parenting, to me, is all about helping the child become the best version of themselves. Parenting, to me, is NOT competition. We moms of differently abled children do best when we support each other and support each other’s children. I have long felt that my children are equipped with exactly what they need, to become exactly who they are designed to be. They are designed in God’s image, perfect as such, and whoever they are is more than enough for me.

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