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I just don’t get it – thoughts on the #ElmoMom controversy

7 Mar

It caught my eye on Twitter, a retweet of a headline with a link attached – “Bystanders were horrified. But my son has autism, and I was desperate.”

I clicked on the link.

I read the article.

I’m pretty sure my mouth gaped open as this woman described how she dragged herself and her kid across the floor in an attempt to break him of his phobia of indoor spaces to where Elmo was performing.

Read at your own discretion over on the Washington Post

I’ve been mulling over this for days, still flabbergasted by it all. I read it to my husband, who turned to me, horrified. “Sorry, but that’s just abuse. Why didn’t anyone call the police?”

Mind you, we had an incident with Maura last year that caused mall security to rush our way to assess the situation when she was having a meltdown. They had heard there was a “woman screaming on the sky bridge”. We’d been on the sky bridge for, oh, three minutes. We were still in the middle of the sky bridge that spanned the six lane city street below us and we had security guards running up to intervene.

This woman’s determination to drag her son in to see Elmo took “36 minutes and 45 seconds”. Thirty six minutes of her “heaving and dragging us both, inch by dreadful inch” across the floor of some arena as her five year old was ” shrieking at an alarmingly high pitch”.

That was the thing that still bothers me the most. Almost no one intervened as this woman literally dragged her child in a restraining hold across a floor. One manager tried, she threw out that her son had autism and had the right to be there.
The manager backed off.

Otherwise, no one stopped them. No one helped them either. No one did anything – except maybe to hurry past, shielding their own small children from this spectacle while trying to explain to their own children why this child was being dragged across the floor screaming.

And I just don’t get it. 

I can’t wrap my brain around it.

I can’t imagine having the strength and determination to fight a child on their phobia for 36 minutes while they screamed and flailed in fear.

 

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[Image description – an in-ground pool] Photo by Casey Clingan on Unsplash

When I was a kid, I had a fear of being underwater. I enjoyed being in the pool, just don’t ask me to put my head under, or make me take off my water wings.

Ironically, my grandparents had an in-ground pool – they had bought a house during the Blizzard of 1978 in Chicago, and the sellers didn’t disclose the pool. It appeared when the snow melted.

We kids thought the pool was amazing. I hung out in the 3ft section, but would put on my floatation devices to go in the 8ft section. I was given a hard time, being 8-9 years old, still unable to swim, clinging to my floaties. Not by my grandparents – they bought different floaties for me to use.

But one day, my dad got fed up and decided the best way for me to get over my fear of swimming and being underwater was to throw me, floatie-free, into the 8ft section. I was panicked, desperately trying to keep my head underwater. I heard my grandfather yell “What the hell is wrong with you?” as my grandmother dove in.

See, my dad couldn’t swim either.

But I was supposed to conquer my fear. 

I can still remember the panic I felt, being forced to face my fear that day. And while I didn’t stop going into the pool, I still had the fear of going underwater. I didn’t learn how to swim that afternoon. I didn’t learn how to swim that summer even. It took another year or two. And it happened on my terms. 

That was me, as a child with an above average IQ, and my fears. Fears that I could use reason to overcome. Fears I could explain, having a very large vocabulary for my age.

Maura has had a few fears, weird fears – for instance, play tunnels. She was terrified of them. We discovered this at a very busy IKEA store. The three older siblings ducked through the short tunnel with a curtain of plastic streamers at the entrance of the kid’s section. Josh thought that Maura would want to do what the others were doing – as that was her usual tendency. He gave her a nudge into the tunnel.

Her piercing shrieks made every head turn.

Josh quickly pulled her out of there and comforted her. And we avoided every play tunnel with her until once day, years later, when she decided she was ready to try it.

Going back even further than that, Maura had a fear of bathing. Placing her in a tub was like placing her in a vat of lava. She would shriek and try to climb back up me. I tried everything – tub seats, sitting in the tub with her, using the sink instead of the tub. None of it mattered – it all terrified her. We resorted to washcloth baths with the occasional shower where one parent held her while the other one scrubbed her quickly.

Her cleanliness wasn’t worth her being traumatized. 

 

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[Image description – black and white photo of a dark tiled wall, a white towel hanging on the right] Photo by David Cohen on Unsplash

One day, at about nine months, I sat her in the tub, giving the bath thing another try. Her face began to tremble. I made the water splash a little – splinky splinky.

Her eyes grew wide.

I splashed a little again.

She splashed a little.

She grinned.

Just like that, the fear of the bathtub was done. It got to the point where she’d hear the faucet and come speed crawling down the hall, grinning ear to ear. To this day, she adores the water.

So why the fear for the first 9 months of her life?

I figured it out months later. When she was nine months old, she had conquered sitting up. Before that, she had a hard time keeping her balance in a sitting position. She wasn’t born with that natural ability to self-right. Nor was she able to catch herself when she was unbalanced. These things had to be taught to her.

So any time the water started moving against her, she’d startle. She would feel unsecure, and have no sense of balance. She had no control over her own body. No wonder she felt terrified.

Thank God I didn’t force her to just deal with baths every night. I can only imagine the phobias and avoidances I would have created. 

This is why this article, this example of “saving” a child from their phobias in a do or die, forcing the issue in such a dramatic fashion…just doesn’t sit right with me. Not as a parent of a child who has had what seemed like unreasonable fears, and not as the child who was thrown into the deep end in an attempt to overcome an unreasonable fear.

As a mom, I’m supposed to be the safe place for my child. I should be the one they can always trust.  

Over the weekend, Maura and I were out and heading back to the parking garage where we’d left the car. Maura was insisting we had to go one direction to the car. I explained to her that it was not that way but the way I was pointing. It had begun to rain. I stood on that corner, in the cold rain,  holding all our stuff as Maura insisted we had to go the other way.

“Maura, the car is over there.” I pointed in the opposing direction. “Can you trust me on this?”

She paused.

“Okay Mom.”

And with that, she followed me. She trusted me. Because while I’ve been teaching her all sorts of things, I’ve also made sure I’ve retained her trust. I didn’t have to force her, drag her by the arm, etc.

This didn’t happen overnight. This didn’t happen within a calendar year. I took things at Maura’s pace within reason. (If she was trying to play in the street and a car was coming, then no, it’s a grab and run to safety motion, explain later – which you’d do with any child.) I slowed my steps down to match hers.

Some things just take a lot more time with Maura.  And as the parent, I didn’t/don’t get to determine the time line, because while I may have benefited from some things, ultimately, this was/is Maura’s life, and what we do should be for her benefit.

This example of this mother taking matters into her own hands, taking it upon herself to break him of a habit instantly, brings up another thought I have always had –

Parents, as a whole, make lousy therapists. This is why we take our kids to someone else to teach them certain things or correct certain problems.

I make a lousy speech therapist, despite having been a kid in speech therapy myself.

This mom? Would make a lousy behavioral therapist. I wouldn’t take my kid to be manhandled by her.

Yes, as parents, we are our kid’s first teachers.

Yes, as parents, we teach them so much.

But there’s something about having to be a therapist to your child that crosses a line. You can’t be that safe space, that soft landing, when you have to also play therapist and make them do things they don’t want to do.

Maura doesn’t want me to be her therapist. She wants me to be her mother.

She let me know this the first time I was asked to hang out in her preschool classroom. She looked at me and yelled. I didn’t belong there, and we both knew it. The teacher even laughed and said “She feels you don’t belong here.”

Maura may have a label of moderately intellectually disabled. Maura may not be as verbal as either of us would like. But she expresses herself and my job is to listen.

The boy in the article was melting down because of fear, and his mom refused to listen to him and put her own will and desires first.

And the worst part of the article, to me, is that everyone around her just let her do this.

They let her drag him across the floor screaming.

They walked by as he screamed in terror.

Mom yelled “He has autism!” and everyone went “Well, okay then.”

Since when does “He has autism!” allow for mistreatment to happen? Because it was mistreatment. As she stated, no doctor thought this was a good move. She wasn’t trained to do this.

And they let it go on.

For thirty-six minutes. 

For thirty-six minutes people walked by this mother on the floor, her screaming son clamped between her legs, dragging them both across the floor. And let it happen “because autism”.

How is that acceptable?

Newsflash – it isn’t. But it just sets up children like mine to be abused by people more. Because we’re legitimatizing this sort of treatment towards kids with special needs. We’re excusing ill-treatment of children because they’re not “normal”. Because the goal for kids like Maura isn’t to stand out, it’s to blend in. Even if it means bullying them into submission.

And we’re okay with that as a society. 

We are allowing it.

We allow it by walking past.

We allow it by saying nothing.

We allow it by letting this article be published.

We allow it by giving this woman a book deal.

We allow it by letting her speak to other parents whose child has been newly diagnosed with a cognitive disorder. And she’s telling them “Do what it takes to break them. It’s okay. You want them to blend in. The goal is to make them blend in.”

Someone please explain to me why this is alright. Because I don’t get it.

 

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[Image description – Maura, sitting in front of our really messy bookshelves, wearing black headphones and a blue tee shirt, looking down]

 

 

 

 

 

 

 

 

 

 

 

 

As Maura’s mom, I’ve had to make her participate in certain things she wasn’t thrilled about. Like blood draws, or wearing seatbelts. There are certain things, for health or safety reasons, you just have to enforce as a parent. Not playing with fire – that’s a hill I will die on.

Parenting, in general, is about picking your battles. Knowing which to fight, which to concede, which to compromise and meet in the middle over.

I was a parent before I became a special needs parent. There were three others who came before Maura, who shaped me as a mother before she entered the scene. In many ways, my parenting didn’t change with Maura.

Thank goodness.

Stepping into the world of special needs parenting after having gotten three kids through toddlerhood was overwhelming. Suddenly, I was supposed to do everything, try everything, be everything. All my focus was supposed to be put on Maura, in fixing her.

Except I knew Maura before I knew of her disabilities. And I liked who this tiny smiling girl was. She didn’t seem to need fixing, just aide and assistance.

Not to mention, I still had three other children who needed my attention. Three other children who taught me how to pick battles, how to take a step back and realize it wasn’t about me and my wants.

I had three other children who reminded me that maybe none of them would be brain surgeons.  That part of their life wasn’t about me.

Those three siblings of Maura, who were her biggest cheerleaders and best examples back then, were also a good litmus test when it came to parenting Maura.

“Would I do this with Collin?”

“Would I do this to Miriam?”

Yes?

No?

Why or why not?

 

 

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“Is this the hill you want to die on?”

9 Aug

Earlier in this year, I got into an argument with a friend of a friend on Facebook. As you do.

Mind you, I try not to do such things. I’ve even gone as far as to take the subject at hand, and post about it on my own page so not to start a fight on a friend’s page.

But this day, I didn’t.

Why?

The friend of my friend started making up a new “tard” word. As in “this person’s so retarded that we have to come up with a new “tard” word to show just how stupid they are.” (please note – all conversation is paraphrased from memory)

I was all “Yeah, “tard” words aren’t cool, stop it.”

Friend of friend. “I can say anything I want.”

Me – “Well, as someone who has a daughter who is, to use the more outdated medical terminology, mentally retarded, I am telling you that “tard” words aren’t cool.”

Friend of friend – “OMG, I can’t believe you used the phrase “mentally retarded”, I am a teacher and we don’t use such language. I have never used the phrase “mentally retarded” in all my years of teaching!”

Me – “Da fuq?”

Yes, dudebro called me out for using “mentally retarded” after defending his use of his made up “tard” word, trying to paint me as the insensitive one. So I said something snippy and brilliant and kinda mean that I don’t recall because it’s been months. But I’ll own that I was being snippy and rude at that point.

Our friend steps in…my friend who has proclaimed their love of my daughter, who has always been super supportive, who has always shared what I written…and my friend told us to cut it out, and me basically to shut up.

My friend told me to shut up.

I may have seen a wall of white hot fire. I don’t take well to being told to shut up like that.

I was all “You have got to be kidding me.”

My friend was all “It’s my wall, people can say what they want, I won’t censor them.”

I was all “Seriously, are you kidding me?”

My friend said “Is this the hill you want our friendship to die on?”

Hmmm…let’s contemplate that hill. That hill that’s built on a slur for people with my daughter’s disability? The slur that I have been vocal about not using? That’s sort of been my platform? That I’ve written blog posts about and you have shared? Is this the hill I want to die on? Want to sacrifice our friendship on?

My first thought was “Do you not know me?”

My second thought was “No. Honestly, I will not unfriend you over this. You are my friend.” And I said this.

One or both of us may be having a bad day. I was definitely now viewing the post through a red haze of anger. The friend of a friend was at that point, offering to not use “tard” words on our friend’s page.

But as it turns out, the damage was done.

I steered clear of commenting on my friend’s social media, partially because I was angry and obviously posting in anger wasn’t working out. Then it looked like my friend took a break from social media. Summer came along and I got busy with things.

But last week, my friend posted something on Instagram. And I commented with a long-standing running joke between us.

Today, I realized that my friend has blocked me on Instagram. We are also no longer friends on Facebook.

So here I am, alone on this hill that one of us was apparently willing to let our friendship die on. I stood my ground. They walked away.

If I could go back to that day with that post, would I choose to stay silent?

No.

Who would I be, as a mother, to allow people to use slurs based on my daughter’s disability? How is using a disability slur any different than using a racial slur or slurs against LGBTQ+? In my world there is no difference.

So yes, I guess in the long run, it’s a hill I’d die on.

 

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Photo – me with my kids. on a hill. in Ireland. 2011

 

 

 

Life Interrupted

7 Aug

“No excuses!” life shouts at me.

“But…you see-”

“NO EXCUSES!” society shouts, cutting me off.

And there is my excuse.

“You keep saying you’re cleaning your house but…” they say as they wave their hand to note the piles of crap everywhere, waiting for the final sorting and putting away phase.

“You keep saying you’re going to lose weight but…” they say as they eye my not-decreasing waistline and the cake in my hand.

“You keep saying you’re a writer but…” they say as they imply that I’ve yet to be published.

“Well…you see-”

They interrupt me. “NO! NO EXCUSES! JUST DO IT!”

And therein lies the problem.

My life is a series of being interrupted. Not only that, but Maura’s latest thing is to start a show, watch five minutes of it, and then switch to another show, watch three minutes of that, switch to another show, watch 27 minutes of that and flip shows five times in five minutes. I already have a list of things to do that’s a mile long and now I have to figure out how to break Maura of her tv addiction. And yet I have curtains that I need to hem that have been sitting there for six weeks but I can’t do those yet because we rearranged Maura’s room and in doing so, she got into all the stored winter clothes, so someone moved them all into the laundry room and started washing the already clean clothes, so now I have to finish that, but I also need to wash my clothes because it’s been so hot here that I haven’t been doing laundry because I’ve been avoiding turning on the dryer. But I also need to get Maura out of the house, but I also need to go grocery shopping, but Maura and grocery shopping don’t always mix. I could have groceries delivered, but that costs extra money and I’m trying to be thrifty. But then we have no food and so I end up ordering pizza, which is not a healthy diet food, and at that point, I just don’t care.

And then, because of all this, I have to get down on myself for having the messy house, the disorganized life, the lack of writing, the lack of weight loss. Then I start feeling I can’t do the “fun” things like writing or sewing because I need to do the cleaning or the laundry, but I really don’t want to those, but I feel like I should, and then I end up not doing either thing and just surfing the internet feeling overwhelmed, or reading and ignoring the mess around me. Which is a step up from laying in bed binge watching shows.

I’m overtired, overwhelmed, and overweight. I am, apparently, also my own worst critic. My new therapist has named her Mean Phoebe, and Mean Phoebe is actually quite mean. She is comprised of all the people who have been over-critical and not accepting enough of me throughout my life. I need to work on that as well.

I keep forgetting to though because people keep interrupting me to shout “NO EXCUSES!” Or to fix the batteries in the remote. Or put Maura’s hair in a pony tail yet again, even though I put it in a pony tail ten minutes ago, and she keeps pulling it out just for me to redo it. On top of normal daily interruptions.

And to be honest – being super busy just isn’t my style. I need down time. Probably because with Maura, I always have to be on.

My life is chaotic in ways others don’t understand. It’s normal chaotic family life topped with the unpredictability of life with Maura. I crave organization these days. If everything is organized, then maybe I can stop having to choose between cleaning and writing. Maybe if everything was organized and hidden away, Maura would stop pulling everything out and depositing it all over the house. If everything is organized, maybe the visual of neatness will bring order to my brain. I walked through Ikea the other day and all those little show rooms, where everything was laid out just right and shelves were full of little boxes of things organized….it was so tantalizingly delicious.

Reality is, I could be all Kon Mari organized and Maura will still create a mess. I will still be interrupted. Laundry would still be backed up. But at least I’d look like I had my shit together, and that’s something, right?

But I have to start. And starting is hard. Especially when Mean Phoebe is muttering about how we’re just a slob, we’ve been a slob our whole life.

And society yells “NO EXCUSES!”

And I flip off both society and Mean Phoebe, and start a list. Not a bullet journal. Not a 40 bags in 40 days challenge. Just a list. A little list. Do my laundry. Do Maura’s laundry. Change the sheets on our bed. Baby steps to the laundry room. Baby steps to the kitchen. Forget meal planning for two weeks, just figure out what we’re eating tonight.

Because some of us have excuses. Some of us have lives interrupted.

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