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Tag Archives: special needs children

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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Enter Technology

26 May

This is the twelfth installment of the story of our journey with Maura…

We’re a very technologically orientated family.  We got the laptops and the tablets and the smart phones and the Xboxes and all sorts of containers of wires and parts and motherboards.  Josh likes gadgets and new technology.  It’s kinda his thing.

So looking back, it’s even more surprising that Maura wasn’t hooked up sooner with some sort of modern technology.

Part of it was that her fine motor skills were so crappy, she couldn’t manipulate lots of things.  When she presses a button with her forefinger, her finger bends somewhat unnaturally backwards thanks to being hyperflexible.  There was more than one time she threw one of the older kids Nintendo DS’s across the room because she couldn’t make it work for her.  Too many tiny buttons to press.

At one point, we got a Wii – yet even then, it proved a bit too much for her.  Her siblings would hand her a controller without batteries so she could feel included.  (We do have a Kinect, and she was just able to start figuring it out how to play it when we moved here…and now, our living room is too narrow for us to use the Kinect.  I’m eager to see what she’ll be able to do with it when we get a bigger living room.)

So Maura, in this sea of things that went beep, was still living like it was 1990.

At school, she didn’t “qualify” for assistive technology.  I’m not sure why, no one ever discussed it with me.  The only assistive technology I saw was the one other student’s device, which looked like a toy out of the 1970’s and could hold about 20 pictures.  He’d press the photo of what he wanted to ask.  Maura didn’t need that, and even if she did need that, I’m not sure she could have pressed the buttons.

When Maura was in kindergarten, we started doing extra speech therapy outside of school.  My friend hooked me up with her son’s awesome speech therapist, and every Friday, we’d drive over to her house where she’d have Maura work on ending sounds and S’s and F’s.  Her routine was to have Maura work for X amount of time, then take a very short break with something fun – all while I took mental notes on how to work with Maura at home, and flashbacks to my own days in speech therapy.

One spring day, she announced that she had a new fun bribe for her kids – and unveiled a shiny new iPad.

It took Maura about twenty seconds to figure it out.

A couple therapy sessions later, the therapist was working with Maura with the iPad, an app that would show four pictures, one word, and say “Find the…” and have you find what the word was.  Bee, cow, cat, dog…

The therapist eyed Maura and said “Let’s try something.”  She went into the settings, turned off the verbal prompting, then went back to the page with the cow, cat, dog, bee and pointed to the word.

“Can you find that word Maura?”

Maura looked at the word – and pressed the right picture.

The two adults in the room kind of went “Naaaaah…fluke…”

So she tried it with another one.  Maura got it right.  Maura got the next four out of five words right.

My reaction was something like “Holy shit! She can read!”

That was the day I went home and told my husband – who works for Microsoft – that we had to buy an iPad.

This was just when people like me were beginning to discover that kids like Maura, who couldn’t use anything else, were excellent at touch screen devices.  We kind of balked at the idea of buying our 7 year old special needs child this fragile, very expensive device.  But the more she worked with the speech therapist’s iPad, the more we knew we had to get one.

And so we did, finally. Along with an Otterbox case to protect it.

A week later, we learned that when the guy at the Apple store said “Oh no, you don’t need a screen protector, it’s virtually impossible to scratch it.”, he really didn’t know what he was talking about.  Three big long scratches thanks to Maura’s metal medical id bracelet, a frustrating visit with a non-helpful “Genius”, one phone call to the Apple hotline (thanks to my brother who said “Call them”) and another trip to the Apple store later, we got a new non-scratched one.  And then we went to Target for an Invisible Shield.  And then, the new one’s wifi keep failing, so we had that one replaced – third time was the charm though.

I went to the school and asked about assistive technology.  Specifically, an iPad for Maura to use at school.  The girl who didn’t speak much or clearly, and couldn’t write, and proven to me that her brain wasn’t just full of rainbows and daisies.  I also knew that there were iPads in the district to be used.

I was told no.

I pushed the issue.

I was told sorry, the only one we could use in our particular district was being used with a preschooler.

I kept pushing the issue because dammit, we found something that worked with this child.  When you have a child who scores depressingly on the IQ scale, and then she proves that there is a little more going on in her head than you imagined, you want to do everything you can to harness this new ability.  Even if it means being a pain in the arse to some woman from the county who was the assistive technology expert, who spent maybe an hour assessing your child.  (Really, I don’t know if she spent any time with Maura.) (You may also wonder why we didn’t just send in our iPad – the reason was, no one could guarantee that if it was broken during school hours, they would pay for a replacement, and I didn’t want to risk that.)

Eventually they compromised with “We can bring the iPad over from the preschool for her to use in the afternoons.”

Great!

And then the assistive technology woman said “But, she may ONLY use it as a communication device.”

Crap.

Yep, Maura hated it as a communication device only.  The stubborn little girl decided to have nothing to do with communication programs.  And really, I wasn’t looking at it as a communication device, but as a learning tool.  Maura is not a typical girl, she doesn’t learn like a typical child.

But no, no learning tool for us.

In an ironic twist of fate, the year after we left that school, they took the very large donation that was to be used for technology only, and bought every kids in the district…iPads.

To be used as learning tools.

<headthunk>

I can be honest – when I saw someone post a newspaper article about how our old district was being all cutting edge with their iPads in the classroom, helping kids to read and do math and learn, I went a little cross-eyed remembering how not that long ago, they gave us a hard time for even asking about this same device for Maura.   My request for at least an adaptive keyboard was never heard.  I was lucky to get a special pencil grip for the girl.  But now every kid has an iPad.

sigh.

Such is the life.

I can also admit – the iPad has become less of a learning device as an entertainment system for Maura.  And that’s okay.  She has her games and her videos and music, and it has come in quite handy when traveling.  She adores it to the point that we refer to it as the crackPad.  We now also have a little old iPhone – or crackPad Junior.  Because she started throwing fits that everyone had their own phone and she didn’t.

Because at the end of the day, there is this part of her that wants to keep up with everyone else.  Especially in the cool toys department.  She wants to play her games and watch her shows and listen to her music too.

And in its own way, that’s learning too.  Maybe not academic learning, but it’s learning about life.

In a way, that silly crackPad has given her a sense of independence, and of fitting in.

Every so often, we’ll have a new kid in the house, and they’ll go “She has an iPad?!?!?!?!”  So I’ll explain how she can’t play the Xbox or other game devices, or can use the computer.  So, she got an iPad.  The kids will go “Oh!  Okay.”

What’s funny is that my own kids weren’t that jealous when Maura got the iPad.  We made a strict “This is Maura’s only” rule, and they were all “Great, now she’ll finally leave my DS alone!”    Now, they use it a lot when they babysit her, so she’s is occupied and not pouring nail polish on the carpet or flooding the kitchen.

And I use it to lure her onto the potty and get her to poop.

Yes, it’s a versatile device, that silly little iPad.

Maura and the iPad - 2011

Maura and the iPad – 2011

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