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Tag Archives: autism

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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Confession – I’m not that good with people first language

17 Nov

Yeah, I know, that makes me not a good spokesperson.

Seeing as I’m not getting paid to be a spokesperson…I can live with that.

Maura has special needs – that’s our quick and easy way to explain her issues to strangers. Strangers who don’t need the whole saga of being undiagnosed, her speech issues, her strabismus that’s also pseudo-strabismus, etc, etc, etc.

I have a special needs teen – because sometimes, I just don’t have time to type out “I have a daughter who is a teenager living with disabilities…”.

“Special needs” and “disability” IS part of Maura’s definition. There is NO shame in that. It’s just part of who she is. Just like I can embrace my role as Anxiety Mom (which totally comes with a cape, btw, which I worry about getting caught in things.)

I could say I have a daughter with disabilities – but society still sees “disabilities” as that wheelchair symbol. You know the one –

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The fact is, Maura isn’t really physically disabled. Explaining her cognitive disabilities would require a different kind of symbol, one that has yet to be discovered.

 

I also use the phrase “special needs” in regards to things like Maura (“she has some special needs”) or as a self-descriptor on the internet (“I’m a special needs mom”) because people get it. People don’t question it. And it’s the shorter, easier to say version of “She has moderate cognitive disabilities with some minor motor skill issues”.  Because that <—? That is what we have in the “label” department.

Now, pause and think about all this yourself. When you hear “disabled”, what comes to mind? The wheelchair symbol? The elderly person with a cane or scooter?  A Paralympian?

Do you see someone who doesn’t have anything physically wrong with them?

My daughter doesn’t look disabled even though she’s pretty darn disabled according to paperwork. According to my daughter, she’s pretty darn abled, and I completely agree with it.

However, I could get criticized by the disability community for using the phrase “special needs” and “special needs mom”. Apparently it’s a no-no. And in the autism community, there’s the big “people with autism” vs “suffering from autism” vs “I’m autistic, I will call myself autistic, stop correcting me in how I call myself!” (no, seriously, it happens. People get so gung-ho on people first language that they correct actual autistic people for calling themselves autistic.)

Here’s the thing – at the end of the day, the order in which you put these words don’t matter as much to me as how you treat my daughter. Do you treat her as a cognitively disabled person…or as a person? That’s the “people first” part that concerns me the most.

 

 

 

 

This is where I publicly shame Facebook

14 Nov

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Do me a favor-

Go to your Facebook page. Go to the search box. Type in “retard”. Now, see how many results come up? Take out the ones in foreign languages. Still leaves a large number of groups out there.

Feel free to report them to Facebook. But let me tell you one thing – they will keep that page up and tell you that it doesn’t violate community guidelines.

What brought this rant about?

A Fabeook page called Trump Acceptance Resistance Disorder – or TARD for short.

TARD.

Let me repeat – TARD.

Now, I’m not linking the site because nope. But one of their photos is a “calm down kit” with PECS pages. PECS – also known as Picture Exchange Communication System – something my daughter uses. Something many students with disabilities use. Because TARD.

Elsewhere, I learned that they listed the symptoms of TARD and one of its co-morbities is autism.

Because TARDS have autism. TARDS need the PECS system.

 

But Facebook finds this okay. This is an acceptable community group. As is all the other “retard” inspired group names like

And He was a Ra-Tard

atheists and evo-TARDS think they can trick me

Smokin’ Tards

Fuck Tards (that one is “just for fun!”)

Retard Town

Retarded Things NFL Fans Say

Retard Incorporated

Retarded Space Monkey

 

There’s more…but I’m tired. And Facebook is okay with this. I reported it and got the generic “This doesn’t violate community guidelines” reply. As my friend said, “It’s a shame there wasn’t a picture of a nursing mother there. My friends are reporting it as I type. I fully expect Facebook to send them the same generic response. Facebook doesn’t care that my daughter with intellectual disabilities or my friends sons with autism are used as bad political humor fodder.

 

ETA – Hey! You know what? Maybe if everyone who reads this post  also reports that one Facebook page I talked more about, maybe Facebook will get the hint that we as a society do not find this acceptable.

Wanna take the report challenge? LOL!

 

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