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Tag Archives: disabilities

Can we discuss being able-bodied?

27 Jun

My daughter Maura is able-bodied. Her legs work fine. Her muscles are pretty strong. Her organs are doing awesome. Even her epilepsy has cleared up, gone into remission or whatever epilepsy does when it stops occurring. Sure, there’s some low muscle tone and some far-sightedness, and she’s not amazingly coordinated. But all in all, Maura is quite healthy.

But she is also disabled.

But she would be considered able-bodied.

But she’s actual disabled.

But she’s healthy.

She is a conundrum. She doesn’t appear disabled. She has what’s known as “invisible disabilities” – hers can’t be seen at first glance. And that’s what’s getting me worried, what with health care back on the auction block.

Kellyanne Conway said (and I reluctantly share) –

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don’t bother clicking the play button, it’s just a screen shot

 

Does this mean she expects someone like Maura to see what her options are?

“Don’t be silly Phoebe, she doesn’t mean her, obviously.”

But obviously, Maura is able-bodied. And Maura’s been considered “not disabled enough” in the past, by the state of Michigan when we applied for a children with special needs Medicaid program.

You can be able-bodied and unable to work. Maura a prime example. But there’s also those who are working so hard to just stay alive mentally that they can’t actually hold a job. Should they seek “other options” because they have PTSD or depression? Should they be denied Medicaid because they are working to figure out how to live with schizophrenia right now? I mean, they might be as able-bodied as Maura. Are they just all slackers undeserving of health care?

Meanwhile, V.P. Pence said this –

 

First – why the rush? Why does it have to be by the end of summer? Why can’t we take our time and do it right?

Second – what’s this “personal responsibility” you speak of? Can you define it more?

Because, Mr. Pence, your platform is a pro-life one. And one would think that being pro-life means you’re willing to help all lives, not just congressional ones or political ones. But when you say “personal responsibility”, it seems that you are putting families who do choose life – whether it’s the couple whose unborn child has been diagnosed in utero with Down Syndrome or the woman taking care of her elderly parent – off to float alone.

That isn’t the American way. It may have become the Republican way, to smack a person on the ass as you shoo them out the door while yelling “Good luck! By the way, there’s holes full of bears and snakes!”, but as Americans, we pride ourselves on coming together and helping each other. That’s why there are so many people sharing Go Fund Me campaigns to pay for someone’s child’s new wheel chair (that isn’t covered by insurance) or wife’s cancer treatments (that have left them bankrupt).

You say “personal responsibility” like we all haven’t been personally responsible for our health care bills. Newflash – we already are. Too much so. But the way you say it has people worried. Do you expect my disabled daughter to be personally responsible for her health care bills when she can’t be left responsible for brushing her teeth daily without supervision?

“Of course not Phoebe.” you may say. But what you’re also saying is that we as her parents, who are being pro-life, are personally responsible. And not to expect help. Ever. Because that’s the Republican way.

So here I am, with my able-bodied daughter, wondering what the future holds. What the future is going to expect from her. And I don’t know.

What I do know is that something like health care shouldn’t be rushed. Something like health care should have lots of input from people whose lives it affects. Some things, like the phrases “able-bodied” and “personal responsibility” shouldn’t be thrown about carelessly. Health care shouldn’t be broken down into sound bytes and tweets.

And I definitely shouldn’t be told I’m overreacting or that it can’t possibly happen when there are congressmen who are willing to vote on a health care bill they haven’t read.

I have enough to worry about and plan for Maura’s future. I don’t need to worry about what kind of job will give her health benefits because she’s deemed “able-bodied” and able to work.

If you live in these states, please call the listed senators. If you don’t live in these states, pass on this list to people you know in those states. A call script is below the list. Copy and paste for widest circulation. Call EVEN IF they said they are voting against the bill. GOP Leaders are looking to offer $$ for votes right now.

Alaska – Lisa Murkowski (202) 224-6665
Alaska – Dan Sullivan (202) 224-3004
Arkansas – Tom Cotton (202) 224-2353
Arizona – Jeff Flake (202) 224-4521
Colorado – Cory Gardner (202) 224-5941
Florida – Marco Rubio (202) 224-3041
Louisiana – Bill Cassidy (202) 224-5824
Maine – Susan Collins (202) 224-2523
Nevada – Dean Heller (202) 224-6244
Ohio – Rob Portman (202) 224-3353
Pennsylvania – Patrick Toomey (202) 224-4254
Wisconsin – Ron Johnson (202) 224-5323
West Virginia – Joe Manchin (D) (202) 224-3954
West Virginia – Shelly Moore Caputo (R) (202) 224-6472

“Hi, my name is [NAME] and I’m a constituent from [CITY / STATE].

I’m calling to urge Senator [NAME] to vote against the Better Care Reconciliation Act. As the CBO analysis of the bill makes clear, this legislation will cause millions of people to lose their insurance and will raise premiums for millions of others, yet does nothing to resolve the Affordable Care Act’s shortcomings. I hope the Senator will do the right thing and reject this bill, even if there are modest changes. Reforming the ACA should be done in an open, deliberate way with public hearings and input – not rushed through the Senate with only days to consider the ramifications.”

 

 

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Even among the extraordinary, we’re still a bit ordinary

7 Jun

“Medical science is just not interesting in kids like your daughter.” a neurologist once told us.

What I’ve come to learn is something I’ve always sort of known. We’ve never been interesting enough.

Sounds silly, because if you’ve met us, you know, we like to keep things different. But when it comes to disabilities and special needs, we’re kind of bland.

Oh, don’t get my wrong, I’ve always been thankful for the blandness of Maura’s issues. Having bland disabilities means she’s healthy and happy and able to do so much. Ironically, that’s what makes us a bit uninteresting.

Maura’s needs have never been sexy or trendy enough to get interest from the medical community. Maura’s disabilities are too generic for strangers to really care. We have no big diagnosis story to bring out. I can’t tell you what it’s like to have a doctor reveal The Something Maura Has – because we’ve never figured that out.

Reality is, for the first five years or so of Maura’s life, everyone downplayed Maura’s disabilities. Told me I was overreacting, that Maura would be fine. By the time we all realized she wasn’t going to be fine, we were all used to things the way they were, and there was no crisis moment to deal with.

And yet, I can also look back and realize that part of our perceived ordinariness is my own fault. I was raised in a “suck it up kiddo” atmosphere. If you skinned your knee, you grabbed the Bactine and a band-aid and dealt with it. When the choice is either laugh or cry, I choose to laugh. I was trained not to show my darker feelings. I still don’t show my sadness. I will joke at a funeral before I’ll cry at one.

So there I was, being calm through it all, finding the humor in situations, carrying on with life, and embracing each new thing thrown at us. While other people would mourn the introduction of ankle braces, I was giddy about them. Maura needed the support and when we got them, I was happy for the difference they made. When she developed epilepsy, I remained calm, and within a few weeks, noticed so many developmental gains that I all but hugged the bottle of seizure medication for allowing Maura to do more.

And Maura was such a happy little kid, smiling with her whole face, always willing to try something new, working hard to keep up with her siblings.

We were a pair – a smiling happy pair. Obviously we weren’t in crisis, obviously life was okay. There were others who needed more attention than us, others with more problems, more issues, real issues.

When I did crack, I would crack spectacularly. One can’t hold it all in and not eventually crack in a normal way. No, I would crack, spectacularly, garnering interest and concern for a moment. But since my life motto seems to be “Never let them see you cry”, I’d dry the tears, take a breath, and keep moving forward.

Outwardly, we were pretty normal. Yes, eventually, everyone got on the same page that Maura, indeed, was disabled. But getting to that point took years. Not a day, not months, years.

And so, even in our extraordinary life, it all became ordinary.

Because we treated it all as ordinary, people followed our lead and treated it as such. Because we didn’t make a tragedy out of things, no one else did. Because we included Maura in everything, people accepted her presence where ever we went.

And those are all good things.

But, in doing all that, we’ve sort of been seated in the back of the room when it comes to families with special needs. It seems like I’m complaining, and I know, I shouldn’t. But dang if at any point, I could have used a meal train or someone coming to clean my house or just watch my kid.

Instead, I ordered a lot of pizza, had a messy house, and dragged four kids about town. Because stuff still had to be done. Life still moved on, and no one was going to help us out. I wasn’t one to ask for help – I’m still not – so again, some of the blame for not having any help falls straight onto my lap.

I guess I make the extraordinary look ordinary, and Maura has inherited that skill from me.

The fact is, more people find the fact that we lived in Ireland more interesting than Maura’s disabilities. I don’t know if that’s a good thing or not. Or maybe it’s because she doesn’t have a diagnosis that we aren’t as interesting as something like autism, which gets all the press time, or Down Syndrome, which has a lot of warm fuzzy media coverage. No diagnosis that affects one lone girl isn’t as interesting as a syndrome that affects 1 out of 100 kids. No one noticed when Maura’s seizure meds tripled in price, but raise the price of an EpiPen and people lost their damn minds (for good reason.)

Maura’s disabilities affect her, and her family. They don’t really spread to the wider world, not in a way anyone can test for. Not in a way medical science is willing to study and decipher. Not in a way the public can do an awareness walk for, or have a cause to donate to.

And I am grateful for that. Maura has health and happiness and the ability to go where ever she pleases.

But while we go about our ordinary lives here, please, don’t forget, it’s also extraordinary.

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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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