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Tag Archives: special needs parents

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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To the person who doesn’t want to give up their subway seat for my kid…

9 Jul

This article popped up in my feed. I read it, and I’ll admit, part of me did agree with you. But then you sort of glossed over that disabilities may not be seen by the naked eye. And that’s where you lost me. And since I was willing to hear your side – and again, even agree with some points – I think you now need to hear my side of things.

When we lived in Dublin, we were blocks from a Luas station – the Luas being the light rail train that ran from the more suburban areas of Dublin to City Centre. As someone who grew up with commuter trains in Chicago, I was enamored of the Luas. Trains get people places, and for less than what parking would cost.

My daughter Maura loved the Luas. She had her own Luas card for commuting. Because for the first few weeks of school, we had to commute by train. The commute meant walking the five-ish blocks to the train station, and down two flights of stairs to the platform (or use the elevator), take the train to our stop, then walk another several blocks to her school. Since we were traveling during the morning commute time, the train was usually full when it hit our stop, and packed by the time we were ready to get off. I soon figured out a spot that worked for us – the last car, by the back door, against the wall where Maura could lean against it for support, and a quick and easy exit. I would stand in front of her, shielding her a bit, but also shielding herself from other passengers so if she lost her balance, she lost it onto me and not a stranger.

 

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Maura waiting for the train in Ireland – 2011

 

Usually mornings went smoothly. It was afternoons that got difficult. She’d be tired from the school day, and the walk to the train could mean a series of bribes and cajoling. There was a little convenience store right next to the train where I’d let her buy a bag of popcorn if that’s what got us to the train. I would hope that we’d get a seat so she could sit and rest before having to walk home. If it was full, I’d be the mom you described in your piece, telling her she could sit soon, and nabbing the first spot available for her.

The train in Dublin wasn’t nearly as cut throat as other systems I’ve ridden on (which, on top of Chicago, I can add Paris, Barcelona, London, and yes, even the NYC subway.) The Dublin train riders were more likely to give seats to kids. Once, a school group came on, and little girls in plaid skirts were taking seats – and I watched not one, but two young men get up from their seats and move in order to give the school girls their seats, so that the teacher was able to have them all in one place. They didn’t ask how able-bodied the girls were.

Listen, I have taught my own children to give up seats for those who need it, whether it be at church or on a train. They have never balked or complained, and now, as almost grown/grown people, they are still giving up their hard-earned seats for those who may need it.

But I’ve also been the mom who needed the seat for my kid.

My very normal looking kid.

My kid who may look like she’s enjoying standing there on her own two feet.

My kid who had epilepsy that affected her balance. Who has motor skill issues that affect her balance. My kid with low muscle tone, who tires out more easily. My kid who can’t always correct or catch herself when she starts to fall, or who can’t always move fast enough to block herself when she does fall. The kid who couldn’t understand why she couldn’t sit when tired. The kid who’d be safer seated on a bouncing cornering train. The kid who, in your eyes, at first glance looks totally normal and healthy. Because she is healthy for the most part.

The one you basically dismissed with your bland statement that disability isn’t always visible to the naked eye. Because while you’re willing to write – possibly in a CYA sort of way – that not all disabilities are visible to the naked eye, you’re also ready to write off that me promising my kid a seat equates to coddling. Because to the naked eye, my daughter looks like an average kid.

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Maura – 2017

 

Now more than ever, I need that seat for Maura. Yes, she’s older, taller, and better at balancing herself. But when she stumbles and falls or needs support, she leans on me. Me, her now-shorter-than-her mom. Me, the gal with the twitchy back and inflamed shoulder. Me, who got that twitchy back and inflamed shoulder from years of helping Maura physically. Me, who would and has happily not sit if it means my daughter gets a seat.

Maura getting a seat means she gets a rest break – one that may not seem needed but will pay off later. Maura getting a seat means that I don’t have to use my own body to help hers cope and adjust with swaying train cars, stops and starts. Maura getting a seat means she won’t bump into other passengers while trying to catch her balance.

Listen, our world is more difficult to navigate because of my daughter’s disabilities. That her disabilities are invisible doesn’t make things better. Because we get judged – whether it’s for using the disabled toilet, or using the disabled seating on the train, or being judged as a coddling parent by someone’s cursory glance.

There are a lot of disabilities that aren’t visible. I personally know several kids who could use a seat on a train even though they look able and happy because their disability isn’t apparent to the naked eye. Kids with autism, kids with mild cerebral palsy, kids who have had strokes as toddlers – and my own kid, who doesn’t have a diagnosis but definitely is disabled.

And you know what? As the mom of three other children, who are all able-bodied, sometimes even those kids need to sit. They’ve had long days, or have a long trek ahead of them once they get off the train, or are just clumsy and would be safer on a seat. Moms who have been dragging their kid about town and are tired of playing goalie and just want to put him in a seat for five minutes so she can take a breather because she knows passengers will give her the stink eye if her kid bumps into them.

Listen, we’ve all been a bit of an asshole when it comes to holding onto our own hard-earned seats on trains or busses. But I’m pretty certain that kids having seats on trains isn’t the downfall of civilization as we know it. And as the mom who used to ride the Luas constantly with her own kid who did need the seat, I am grateful for every kind person who offered a seat to my daughter.

 

 

the stuff of nightmares

29 Aug

I’m not talking about the presidential election this year. No, I’m talking about the things that, if they don’t keep us awake at night, our subconscious haunts us with in our dreams.

I’ve always been a vivid dreamer, even from childhood. I can remember being five years old and “remembering” that I – along with my dog and cat – could float down the basement stairs. But I couldn’t figure out if it was a real memory or a dream. It felt real. I wanted it to be real. I’d sit at the top of the basement stairs wondering if I could fly. Luckily, I was smart enough not to try it, and nice enough not to test out my flying theories on either pet.

But it felt real.

I’m used to having very strange dreams. It’s part of who I am. But last night, I had a dream that was too close to a real fear.

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The dream went like this…

I went back for a visit to our old town in Michigan. I got there in time to witness their latest special education procedure – which was to line up all the special ed students from each grade or class in a glass-fronted room and decide which ones were too difficult. Each child wore a locket of sorts, and when their group was called, parents were able to open the locket to see if their child passed testing.

If they passed testing, great. They went on for another year.

If they did not pass testing, they were culled. Deemed “too difficult” and euthanized.

My friend’s child was part of the group. She told me this was his second time being chosen for testing. I watched one little boy break free and take off running, an aide chasing him down, catching him, and carrying him back to his group, where the other kids were strapped into seats. Parents mulled about the big center area, waiting for their child’s group to be called, not knowing if their child would be considered too much of a burden on society and therefore must be culled. The parents had no say in the fate of their child. It was left up to the school district. Because budgets and all.

My friend’s child passed the test, and allowed to live another year.

We went and bought donuts to celebrate.

End dream.

I don’t need a dream interpreter to help me figure out the meanings behind my dream. It’s simple. It’s a fear we parental people have for our vulnerable offspring. That they’re deemed unworthy, a burden, useless, disposable. Many times, we as parents feel like we have no say in what happens to our child, especially in a school setting. We feel helpless all the time. Sometimes, we’re just happy to survive another day, month, year.

But I’d like to tell my subconscious that it’s all okay, I’m already aware of that. I don’t need to dream about such things, please and thank you.

 

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