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Tag Archives: disability

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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Dear Netflix, thank you for the character of David on “Travelers”

9 Jan

Josh and I have been watching “Travelers”, a Netflix Original Series. He started watching it during season one because he ran out of “Continuum”, so this was suggested (as Netflix does), and I happened to be in the room when he started watching it.

We both got sucked in.

Be warned, there may be spoilers.

 

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[Image description – River Song from “Doctor Who”, smirking, and the word “Spoilers”]

“Travelers” is about people who come to the 21st century from a much more dire future time, trying to fix what went wrong. There’s protocols, and The Director, and other such things. Travelers arrive seconds before a human in the 21st century is about to die, and basically take over their body with their consciousness that’s been sent from the future (it’s a fine moral like, as they’re not taking a life, but they are assuming one, friends and relatives included.)

One traveler is sent into the body of Marcy, an intellectually disabled woman. Marcy has a case worker, David, who instantly notices Marcy goes from an almost illiterate woman who speaks slowly (can we say verbal apraxia?) to a well-spoken, literate, obviously above normal intelligence woman overnight.

Marcy – and therefore David – become a storyline in the show. David is the nicest of all the guys who, when everyone decides Marcy must have been defrauding people for those sweet sweet disability benefits, jumps to her defense. He doesn’t think she’s a cheat or was using the system. He just thinks that obviously some sort of miracle must have happened.

By the fourth episode, I worried more about David, a secondary character, more than most of the main characters. Because they wrote him to be exactly who I would want to be working with and caring for Maura someday. They showed how he paid for things for his clients out of pocket. How he knew what would help calm them, what their favorite foods were, where they were sleeping on the streets. During a pandemic during the second season, he went straight to the shelter to make sure his clients were okay, were cared for – because someone had to, and that someone was him. When he won the lottery, he gave it all to the people he worked for.

He is, for all intents and purposes, a perfect human being. He is who we all should try to be more like. He is the guy I’d want as Maura’s case worker. And that’s saying a lot.

But last night, as season two was winding up, there was a scene where the one character who’s been an asshole the whole first season, and is a recovering asshole in season two, reverts to his asshole ways when talking about Marcy to David.

He called Marcy “the retarded girl”.

I held my breath.

“That’s a hateful word.” David replied.

And I may have yelled “YES!”

David didn’t let me down.

Yes, they used the world I dislike. But then they addressed its ugliness. It was said to be ugly, by someone who’s behavior was ugly in the show.

And then, it’s ugliness was called out.

“That’s a hateful word.”

And the next time the recovering asshole mentions Marcy – two sentences later – he uses a more appropriate phrase – “mentally disabled”.

He was called out on his ugly behavior and it made a difference. David, once again, showed how to make a difference.

There was no big lecture, no big drama around the use of the word “retarded” – just a simple but pointed addressing of it – “That’s a hateful word.” – coming from a man who devoted his life to the people society overlooks or ignores.

For all I’ve seen people defend the use of the word “retarded” in shows and music and books because “that’s just how people speak”, I’ve never seen where then the use of the word is questioned by another character. It’s usually dropped by someone and then life carries on.

But not this time.

This time, some writer for Netflix deliberately chose it. And then deliberately chose to call it out for what it was – a hateful word. And then showed the one who use the word choose a different phrase.

Because while it is a word some people use still, there are those of us who are willing to call them out for that use.

And apparently, Netflix is now one of us.

So thank you Netflix. I know it was just two lines in one episode of a show, but dang if it didn’t mean the world to this mama.

Note – I was totally not paid in any way to endorse this show. No compensation was earned. I do totally recommend this show if you are sorta into sci-fi and like well-rounded characters. 

POST-FECKING-SCRIPT!

Okay, I am now writing from the Great Beyond.

Because when sharing this on Twitter, I did what good social media gurus are told to do – tag and hashtag.

And I got a response.

I got three responses.

First, from Eric McCormack, yeah, the lead actor in the show (and also producer for at least Season 1.) 

 

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[image description – tweet from Eric McCormack]  – “Great Letter, Phoebe, thank you. The writer was @ken_kabatoff, and @bradtravelers created David for @PatrickGilmore because there is no one better at being a great human being.”

 

And then Patrick Gilmore, the actor who plays David, chimed in –

 

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[image description – tweet from Patrick Gilmore] “Thank you for your letter, @herdingcatsblog. That scene was all @ken_kabatoff & @bradtravelers. I was blessed to have an Aunt with Down Syndrome. I got into fights in grade school with anyone who used the “R” word. I hugged Ken when I read that line 🙂 @TRVLRSseries @netflix”

And THEN, this appeared from the WRITER HIMSELF, Ken Kabatoff –

 

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[image description – tweet from Ken Kabatoff] “I’m not crying, YOU’RE crying.

 

So now I’m dead, but in a good way.

Now everyone, go watch this show. Because it obviously is made up of a bunch of really decent human beings – and because I already need Season 3.

 

 

 

 

 

Mixed messages

10 Dec

There’s this phenomenon that happens when your child is being evaluated for any sort of difference.

You are inundated with mixed messages.

Pelted by. Poked with. Swimming in. Slapped repeated by.

Mixed messages.

On the one hand, you’re told “Accept your child for everything they are!”

On the other hand you’re told “What’s the cure for your child’s issue?”

On the one hand, “Relax! God doesn’t make mistakes?”

On the other hand, lists of questionnaires from doctors asking you how you might have caused this during pregnancy.

One hand, “Your child is perfect the way they are.”

Other hand, “I could never handle a child with issues.”

And so on, and so forth, world without end, amen.

This is what I got for…oh…probably three years of Maura’s life. I still get it at times, but for three straight years or so, it was constantly there.

I was told to accept my daughter but cure her, because I shouldn’t really accept her as disabled. I was told to calm down, but that I wasn’t taking this as seriously as I could be, as I should be. I was told it was great that I was laid back, but good moms are Warrior Moms. I was told not to be dramatic about things. I was told how having a child like mine was too hard. I was told having a child like mine was easy. I was told she would catch up. I watched her fall further behind. I was told that everything had to happen by age five or else she’d be behind forever. I was told how that wasn’t true, that development could happen well into her twenties. I was asked “Was there anything that happened during your pregnancy that could have caused this?” in a dozen different ways. I was told not to give up hope. Evaluations hade her sound more disabled than anyone gave her credit for. I was told that I was the expert on my child. I was told that they knew what was best for her. I was told to trust my instincts while everyone around me told me how those instincts were wrong. I was told I wasn’t doing enough. I was told I wasn’t investing enough time in my child. I was told to take time for me. I was told they couldn’t help us.

I was told a lot of things. 

So many things. 

It’s amazing, the moment you say “I think there’s something wrong with my child.” how everyone comes out of the woodwork with an opinion on what you should be doing. Most of those people aren’t their to actually help though. They’re just there to plant a seed of doubt in your brain, which is already an acre of doubt and doesn’t need more seeding.

I don’t know when it stopped with Maura. Maybe when she developed epilepsy? People take seizures pretty damn seriously, and it’s something they know, and is real to them.

Maybe it’s when I was able to stop taking all the “advice” thrown at me. Like when one preschool mom told me the key to potty training was consistency, and I just needed to be consistent with Maura. I told her she could come over to my house any time to help out.

She never did.

But I knew she wouldn’t show.

It was all around the time Maura was four. A year into therapy for myself, three years, multiple tests, and MRI and EEG for Maura.

Three years of mixed messages being thrown at me, I was finally able to send a message to the world.

“I got this. I’m the expert on her. I don’t care what your opinion is. No, I’m not going to rub her down in essential oils because that won’t fix her brain. What’s on paper doesn’t matter, and doesn’t tell the whole story. She is who she is, and if you don’t like that, there’s the door.”

So to you moms and dads who are starting a journey of your own, be warned – there are many many many opinions out there. People will tell you what to do, how to do it, and what to feel. They will be everywhere, and they love to give their opinions unsolicited.

Here’s the thing – 

You don’t have to listen to them.

Just nod, smile, say “That’s nice, but we’re going to keep doing our thing, thanks.”

You do you.

Your path is your own, and you can hike it however you want.

 

 

 

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[image description – My two daughters, both about the same height, walking through the woods, on a dirt path, the sun shining down on them]

 

 

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