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Dear Betsy DeVos

9 Feb

Hi Betsy!

Can I call you Betsy? I’m calling you Betsy – because we’re going to really get to know each other now that you’re Education Secretary.

Who am I? I’m Phoebe, I’m a mom of four living near Seattle. All four of my kids have gone to or are currently in public schools. Me? I went to both private and public schools. My husband went to both plus was homeschooled. My grandmother, mother, brother, best friends…all teachers.

Why am I writing to you? Well, because my youngest child, Maura, is in special education and you seem like you’re not that sure how special education runs in public schools in the U.S.

Me? I know a lot. And as I’m a friendly, open, and helpful kind of gal, I thought I’d help you out.

We’re all watching you, you see. All of us parents with kids in special education. You caught our eye when you were all “Oh, IDEA? Sorry, I was confused.” You may have heard a resounding thunk sound after those words came out of your mouth – that was the sound of thousands of parents heads hitting their desks. A collective head thunk.

 

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Me (left) Maura (right) and our surprised faces

 

Anyway, I digress.

My daughter Maura is a special ed student in a public school system. She always has been as long as we’ve lived in the states (we lived in Ireland for 2 1/2 years, and there she went to a national school that was partially funded by the government, partially funded by donations.)

Let me restate – Maura has always gone to a public school in the U.S.

“But why Phoebe?” you may ask yourself. “Why not find a private school to meet her needs?”

“Because Betsy,” I would say if we were meeting at a Starbuck’s, “there are no private schools designed for my daughter.”

Surprised? Well, buckle up Betsy, because having a child with special needs is FULL of surprises.

See, Maura has a moderate intellectual disability (aka ID). When tested, Maura falls behind in every category possible. At 13, she’s at the academic level of a 3 year old. She has issues with concepts of time, safety, pronouns, why her tablet needs to be plugged in for a while to charge. She has fine motor skill issues so has trouble writing, zipping, buttoning. She needs help with hygiene and needs constant supervision. She also loves Coldplay, Doctor Who, My Little Pony, and books (even though she doesn’t read.)

She’s just a bundle of personality and issues, and despite all the testing, we don’t have a diagnosis for whatever she has. (No, it’s not autism.) (Yes, we’ve tested for autism.) (Seriously, there’s more to special needs than autism.) (Yes, we’ve done genetic testing as well.)

Now, imagine a child like Maura in a regular 7th/8th grade classroom. Where everyone else is reading “Lord of the Flies” and Maura’s flipping through a My Little Pony book. Or when everyone else is learning the fundamentals of algebra, and she’s still learning how to count to 30 properly. Imagine her in a science class where she doesn’t realize that you shouldn’t drink the blue liquid.

Imagine how a private school would handle her. Or a charter school that’s design for students to excel in STEM.

You have to imagine it because those schools don’t take kids like Maura.

“Oh surely you can find…” you might start.

“No Betsy. I can’t.” I will state.

“But if you had school of choice-” you may say.

“Not even then Betsy.” I will reply.

See, we lived in Michigan for a while, near Ann Arbor. Our intermediate school district had school of choice. But there were factors that made schools not a choice. Like student body sizes. If the neighboring school was “full”, then it was taken off the school of choice list. Which makes sense. But also, with a child like my daughter Maura, to leave the school district required the special ed director signing off on it. And the SpEd director wouldn’t do that. Because then the district would lose all those sweet extra dollars that came with a student like my daughter. Those sweet extra dollars that didn’t necessarily have to be spent on my daughter.

“But you had school of choice! You could have moved her to a better school!” you may say.

“Oh Betsy…Betsy Betsy Betsy…it’s not that easy.” I reply.

Trust me, I watched as other parents tried to move. The thing is, your “choice” ends up being “the devil you know” vs. “the devil you don’t”. We had amazing teachers and a lousy SpEd director.

This is where IDEA helped us. IDEA and FAPE (Free Appropriate Public Education). Those federal laws and protections you found “confusing” were our safety net. They made things happen, stuff got done. See, it’s like you’re captured by pirates and you invoke the right to parlay, like Elizabeth Swan did in “Pirates of the Caribbean”. We shouted “IDEA! FAPE!” and invoked our right to get a lawyer and things happened.

IDEA and FAPE are kind of Special Ed 101, along with IEP (Individualized Education Plan). That you failed those questions? Well it did not inspire confidence in any of us.

But we’re no longer in Michigan. We’re in the Seattle area – which still doesn’t have any private/charter schools for the likes of my daughter. But the public school system we’re in? Oh, it’s amazing! Seriously. Ah-maz-ing. See, they have proper funding, and use those funds for – wait for it – giving my daughter and students like her the best education possible.

I know, right?

Maura’s in a special program within the public school, one geared specifically for kids with moderate ID. She’s in a class of her peers. She learns the things she needs so she can reach her full potential. But she is also included in the actual school she’s at, including going to camp with the entire 6th grade class. Overnight camp. For four days. Amazing.

Have you ever been in a classroom full of students with disabilities Betsy? It’s different than a regular classroom. There’s less students, but more adults. Maura’s classroom can easily have six kids and five adults in there at one time. It also has things like swings for sensory-filling needs and a place to hide out when a student needs to chill. There’s PECS cards everyone (PECS is Picture Exchange Communication System, look it up). And its full of kids you may have never interacted with.

It’s okay, most people don’t get the chance to meet children with various disabilities. I hadn’t, not until we moved to Ireland and I walked into a school for students with moderate disabilities.

You know what? You should come visit Maura’s school. Meet Maura, her classmates, her teachers, the extra staff, all the staff. Maura’s school isn’t just great about special education. It’s a school with a larger immigrant population as well, and the most dedicated staff you’ll ever find. And diverse! Like, true diversity.

Yes, you should just come visit. You could probably cover the flight and hotel since, you know, you’re kinda a billionaire. But I’ll treat you to a Starbuck’s.

Meanwhile, I’ll keep in touch on Twitter. Because this is just the start of our working relationship Betsy.

P.S. – My sister called. She told me to tell you she’s keeping an eye on you as well, and not to screw things up for her niece.

 

 

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Why I fight, why I protest, why I keep opening my big mouth

21 Jan

 

For this crazy lot.

I fight for them.

I protest so they don’t have to.

I open my big mouth when they can’t.

It’s not just about Maura and her disabilities – even if there’s more to fight for her than the other three kids. But when I fight to ensure Maura had a better life, I’m also fighting so that her siblings have a better life.

Someday, they will be her caregivers. I know that. They know that. They’ve known that for years.

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photo by Elisha Clarke

Collin, my oldest, has always watched over his littlest sister. He was aware of her lack of progress before most adults were. He keeps her safe. He looks out for her. He always has.

So I make sure that someday, when care giving is left to him, it’s as easy as possible. Which means I fight to ensure that Maura has the best education she can get, learns all the life skills she can. The more independence Maura gains, the more independence Collin will have someday.

I fight to give them both that.

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Sean and Maura 2011

Sean has always been the brother to play with Maura. He he’s been hefting her up since she was tiny. He still helps maneuver her when she can’t. He spent so much time following her on playgrounds, up climbing structures, letting her have freedom I couldn’t give her because of my anxiety. He was always willing to spot her on things, and let her expand her boundaries. He’s always ready to catch her when she falls.

I fight for Maura’s independence so Sean doesn’t always have to spot for her. Even though he always will.

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Mim and Maura after Mass – 2015

Miriam has always been the spectacular big sister. Even when I was worrying that Maura’s disabilities would keep them from having a close relationship, Miriam excelled in her role as big sister. She makes sure Maura gets to have all the fun she wants – and is by her side doing so. If Maura wants a tea party, Miriam will bake the cake for it. If Maura insists Miriam should put on a pink dress, Miriam puts on the pink dress. She is the best friend Maura has.

Someday, Miriam might be Maura’s primary caregiver. For now, I fight to ensure that Miriam gets to be just the sister.

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Maura and Mom – 2014

I open my big mouth for Maura, because she can’t always advocate for herself. She doesn’t have the words, so I speak as her representative. I fight for her rights. I fight for her future. So that she can have what she needs, what she deserves.

Maura deserves as much as her older three siblings. She deserves to have a fantastic life where she reaches her full potential, and is happy.

All my children deserve that.

So I fight for Maura. I fight so we all can win.

When things go south

16 Jan

Yesterday, Maura had a meltdown in public.

This is not new to us. When you have all the feelings and not always a way to communicate them, meltdowns happen. Usually, if we can quickly remove her from the situation, she can calm down almost instantly.

The trick, yesterday, was that removing her from the situation required get her out of the public building with great acoustics, which also meant down two flights of stairs since the escalator was broken, and over a sky bridge.

It was on the sky bridge that things got…interesting…

I was hoping fresh air would help her calm. She loves the sky bridge as it gives a great view of everything. Instead, she stopped to sob some more. At this point, Josh put his arm around her waist and got her moving forward again, even while she kept wailing.

And then two security guards stopped up.

“We heard a woman was screaming on the sky bridge…” they said.

We went into a round of “our daughter has special needs, she’s having a meltdown, we’re just trying to get her to the car, I swear she’s not being kidnapped…”

The security guards instantly backed down, apologized a little as we told them we completely understood, and offered to assist us in any way. Two minutes later, we were in our car and Maura was calmer. Two minutes out of the parking garage and Maura was back to her usual self.

But it was a moment that really struck me – they said they heard a woman. They thought my daughter was an adult. Granted, she’s five foot three, making her slightly taller than me. But still. She was seen as a woman at first.

Folks, we’ve entered new territory.

Society is more accepting of children with disabilities, especially if they’re nicely dressed, smiling, and inspirational in any way.

Society is less accepting of adults with disabilities.

My daughter is morphing into an adult with a disability.

She doesn’t look disabled. Even watching her come back from refilling a drink the other night at Five Guys, I looked at her and realized that at most, she just appears a bit awkward – but not disabled.

When I posted what happened on Facebook, my friends tried to help. “Can you get her an ID, or an ID bracelet?” I could – but that doesn’t really help make her visibly disabled to the general public.

I could probably shout out “Don’t mind us! She has cognitive disabilities and sometimes she doesn’t transition well!” but, you know, I’m kinda busy at the time to be shouting.

Maybe I could get some bat signal, or a flare gun that shoots off so people know that this is not ordinary but not scary.

There’s not a good answer for this. The only one I can think of is talking about it so that more people become aware, so that more people understand what’s going on if my daughter is having a hard time in public.

Because becoming hermits isn’t an option.

 

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