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Tag Archives: special needs parenting

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 Target

6 Jul

You know I love you. You and me, we’re bffs4evah.

However…

Nine days ago was our last day of school. NINE DAYS. We’re just now getting used to our summer vacation routine. Needless to say, I was highly unprepared to see ALL the “Back to School!” stuff out at our local Target.

I should’ve seen it coming. Land’s End has already sent me their “Back to School” catalog (which arrived a week before school was over). You started clearance-ing out summer stuff a couple weeks ago, which led to my hasty buying of lawn chairs and outdoor lighting. You’ve been slowing putting up those “dorm life” end caps.

Still, I didn’t expect to see the fully stocked school supply section today.

And I had Maura with me.

Thus began the Great Backpack Struggle 2017. We go through this every year. Maura sees that wall of backpacks and becomes a bit rabid. Backpacks are her thing. HER THING. She just got a new one two weeks ago, after I smuggled out several old busted ones from her room, and hanging up the four she had left. She’s been very happy with her new backpack.

Until two hours ago, when she desperately needed a NEW backpack.

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I said no.

She tried to put it in the cart.

I said no, put it back.

She threw the backpack at me.

I told her we were leaving.

There was a meltdown. We spread disability awareness in that particular store. Loudly. Along several aisles, as she was all “Fine! I’m leaving!” and stormed down a few aisles.

But she calmed down. It was very impressive how she pulled it back together. So we got the cart, left by the backpacks, and despite a few longing glances towards the backpacks, we got the heck out of that section.

Oh sure, we ended up with a Poppy from Trolls doll, which made the world better, and is cool because Maura didn’t have a Poppy doll and is obsessed with Trolls, but that’s not the point.

The point is – why is back to school stuff out NINE DAYS after school let out? Seriously? Why? We’re all broke here from end of school stuff and trying to buy all the summer stuff just as summer was finally starting here in the PNW. Now we have to nab up all the pencils and notebooks because they’ll be all gone come August 15th, even though school doesn’t even begin until after Labor Day in September, and some of us won’t even know what we need until the, but by then it’ll be too late to buy school supplies and the Christmas lights will be out…

I know that some of this is being location-specific. I know that some areas of the United States have been out of school since the latter part of May. And that you’re running a large corporation that has to suit the needs of all states. Whether or not that timeline suits everyone involved.

All I know is that for the next six weeks, I can’t take Maura to her favorite store because I don’t need to deal with a meltdown over backpacks every. single. time.

It’s not me, it’s you.

I’ll catch you on the flipside!

 

 

 

Be wary the jobs you suggest to me

12 Jun

“Hey, we have openings for people to work with adults with disabilities. Would you be interested in this job?”

A very nice, lovely someone asked me this, not knowing the completely honest yet probably unexpected response I’d have.

“Dear God why? Why would you ask me that?”

Not my best moment.

She wasn’t the first to ask me such a thing. I inspire that train of thought in people. “You should work in special ed!” or “Have you considered started a program for children with disabilities?” My reactions are always similar – I’m startled, and blurt out something that is probably considered rude.

I know it’s meant as a compliment. I am vocal about helping those with disabilities, advocating for my daughter, educating people on what our life is like. They see me with Maura, us getting along famously, us working together, Maura happy and me pretty chill.

I make this shit look easy.

So of course, I would be inspired to make it all my life’s work.

I just can’t.

I’m fantastic with Maura’s disability because it’s what I know. I don’t know other disabilities as well, or some at all. I can handle autism because I’ve been around it. But otherwise, I’m about 10% better than the average person when it comes to all sorts of other disabilities.

I would make a horrible special ed teacher because I’d make a horrible teacher. I’ve never been inclined to teach. Actually, anything requiring a leadership position makes me break out into a sweat. The idea of running a program? I’d probably break out in hives. The idea of being in charge of a program makes me nauseated.

I know my limits.

These suggestions are usually given by good people who don’t have a child with disabilities. So they miss a vital point. That point? That I’m already doing this 24/7, 365 days a year, until the end of my time. I am living the dream, caregiving with the best of them, always on call, always on duty. When I’m not directly dealing with Maura, I would like to use my time in other ways.

Wow, that sounds selfish and horrible, doesn’t it?

Yet, no one suggests a regular mom do more regular mom things while her kids are at school. “Oh, you have kids? You should totally work at a daycare! You’re so good at changing diapers!” No, in those cases, people are all “You should totally pursue other interests, be a fitness instructor because you love running.” No one suggested I become a special ed teacher before I had Maura – and I have friends who *are* special ed teachers.

It’s okay though – I feel guilty about not wanting to work more with people with disabilities as well.

But also, I know  my limits.

The thing is, I have my own pile o’ issues to work on when I’m not keeping Maura alive. I’ve got 44 years of matching baggage to sort out while my anxiety hovers over my shoulder breathing heavily onto my neck. I’ve got weight to lose, and a healthy living train to get on because I have to live forever. I have a book to finish revising. I have laundry to catch up on, and groceries to buy. I have that day, once in a great while, where I recharge by hiding in my room binge-watching Netflix, because I don’t always handle stress well.

I also need to learn how to answer these questions with a bit more tact. That may take awhile, as I have a history of blurting out responses that require more tact.

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Meanwhile, jobs I would trample over my own offspring for are as follows, so please, offer them to me –

  • working in a bookstore, because mama needs a discount on books
  • cocktail taster
  • hammock tester
  • permanent fixture at coffee shop
  • paid writer
  • museum wanderer
  • Lush bathbomb reviewer
  • foot model for all those “feet on beach” shots
  • paid shopper for Target
  • professional napper

Serious inquiries only.

 

 

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