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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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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]

 

 

Life is our therapy

5 Mar

So when you have a child with “something”, all you hear about at first is how VITAL early intervention is. The earlier the better. If you could start it in the womb that would still not be soon enough. Because there’s this idea that if they don’t hit certain things by age five, all ability to learn anything new is gone.

Of course, because I was a good mom, as soon as the doctor said “Low muscle tone” and “possible delays”, I contacted our local Early Intervention people. Because The Internet said it was crucial that my daughter got all the therapy possible right away.

Or, you know, 3o minutes of physical therapy and 30 minutes of occupational therapy each week. Eventually we added 30 minutes of speech therapy to that.

Seriously, that’s all we qualified for. Ninety minutes. And because Maura needed all three therapies, we got the fabulously sucky time slot of 8:30 am Monday morning, Which meant I had to rush the other three kids about, get Maura and I respectable, the older three off to school (which started at 8:25) and then over to therapy. Which, luckily, was a couple blocks away from the older kid’s school.

We had awesome therapists though, who taught me what to do with Maura the other six days and 22.5 hours of the week. And it turned out, a lot of what we were doing was helpful. Because your normal everyday playing? That was therapy. Those were the skills she needed to learn.

“So, what other therapies did you do?”

For a while…none. Insurance doesn’t cover speech therapy for kids unless they’ve had a stroke or something. It doesn’t cover PT or OT unless they’ve had a stroke or accident. We were already paying $700 a month in health insurance, plus everything it didn’t cover (like blood tests and therapy and specialists and regular office visits…basically, it only covered us if we needed a kidney or had a stroke.) We had to be very choosy about the therapies we invested in. We also had to be accepted, as many of them in our area were for autism only – and we actually had Maura tested for autism. We paid $250 to hear that she didn’t have autism. Out of pocket.  We tried applying for the state’s special needs children insurance, only to be told Maura didn’t qualify. Yes, our child wasn’t disabled enough. “But if you can get her a qualifying diagnosis…”

“Ma’am, the one blood test we ran cost us $1200 out of pocket. We can’t afford testing.”

“Oh.”

Oh yes, good times.

Eventually, we switched insurance, that covered a handful of therapy sessions a year (like 10 or 12 – because you know these things magically cure themselves after a few sessions.) We found a hippotherapy place that billed as OT (as an OT ran each session and did OT things with her….just from on horseback.) I don’t know how hippotherapy worked, just that we did see improvement. Seriously, it’s the one therapy I recommend. It’s magical, strengthens the trunk, helps gait and fine motor skills and even speech somehow.

Of course, it was during one of these therapy sessions that Maura had her first visible seizure. Which spooked the horse (luckily, the OT’s husband – a professional horse wrangler – was in charge of the horse that day so the spooking wasn’t visible to me.) And luckily, the OT was familiar with seizures and knew what had happened. so when I went to the doctor with Maura and said “The OT said it was a seizure” – he took the OT’s word. Which was better than mine. I’d never seen a seizure in real life before Maura.

Also, the doctors took the horse’s spooking as confirmation as well. So thanks Horse!

About this time, my husband switched jobs and we got this magical unicorn of insurance that covered everything. EVERYTHING! No co-pays. No fiery hoops to jump through. It covered everything I could ask for. It covered ABA therapy if you had an autism diagnosis.

So I went to town. I looked up places and programs…only to still be turned away because Maura wasn’t autistic. I did find a couple programs, and we stuck her in them. They did help. She also took ballet, and that helped too. I fought for her to have all the freaking therapy possible at school. I was a bit obnoxious about it perhaps, but she was now 6 years old, with the fine motor skills of a 3 year old, and no progress in a couple years.

Even then, we got 30-45 minutes of OT per week.

*sigh*

I had gone down the path of the crazy-making, trying to find something to help my daughter. I drove her to this special, intensive, speech therapy that was a three month program, 2 1/2 hours each day, five days a week, with a commute of at least an hour each way. It did help a bit. But it wasn’t miracle working. It just helped Maura to talk a little more. Of course, we were happy with any progress Maura made. We had stopped looking for miracle cures years ago.

And then, we moved to Ireland.

Suddenly, I had to start over. I had to find her a school, find out what our insurance covered, find out about all the outside therapies to be done. I found out the special school Maura would go to, one for kids with moderate disabilities, didn’t have a full time speech therapist on staff. I wondered if we’d made a good choice with her, in moving to Ireland.

I learned we made a great choice.

See, the program she was in was all about language. It was all about working at her level, and working to build on her skills at a pace she could manage. It was just part of her school day, where they spent part of class time identifying which piece of furniture goes in which room, learning how to say the words as they went. They worked on life skills like toileting, dressing, opening packets of crisps – things Maura was interesting in doing, and needing to learn if she wanted to be independent. They planted a garden at the school, and did cooking on Wednesdays – from make your own pizzas to letting the birthday girl pick what kind of cake to make for her class party (she went with chocolate.)

And we didn’t do any other therapies.

And yet, Maura was making great progress. She learned new words, learned how to use the toilet, learned how to dump stuff in the big pot on the stove (which was not the most thrilling thing for me.) And she did this at her pace, so she was no longer exhausted.

So when we moved back to the states, I looked for that kind of program. And found it. They’re actually quite impressed with Maura’s independence. Our time in Ireland reminded me that life is its own therapy session, and skills can be learned anywhere. She still gets OT and PT and speech at school, but it’s also built into the program she’s in. She doing PE twice this semester because she loves it so much – and you know what? It’s great PT!  Meanwhile, when she gets home, she can have down time, time to play with dolls and broaden that imagination, time to dig in the garden (poor garden), time to make her own toast, time to give me more grey hairs will her growing independence.

It’s funny. We could now afford all the therapies. But like many parents whose kiddos turn into tweens and teens, we’ve sort of embraced regular old life as our therapy, instead of paying someone $120 for 50 minutes of something. It’s not giving up, it’s just a different mindset. We now are more aware of what works and doesn’t work with her. We know what her pace is.

And today’s therapy? Learning to wait for the internet to connect to her iPhone. LOL! “Wait for it…”

"art therapy" at home, with "music therapy" lol!

“art therapy” at home, with “music therapy” lol!

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