And they shall know us by how we treat our most vulnerable

6 Dec

Texas, sadly, at the rate you’re going, you’re headed into the toilet.

In case you’re not a special needs parent in the state of Texas, or know one, you may not have caught up to the news. It’s okay, there’s been a LOT of news lately. Let me catch you up on what’s going on in Texas.

The legislature in Texas has decided to trim a budget. Well, more importantly, the budget for Medicaid reimbursements for therapies for kids with special needs. And it starts next month.

“But schools provide therapies!” you may cry out.

Well, apparently Texas is also capping the percentage of kids who qualify for special ed services. To the point that the Houston Chronicle has a several-part series on how the state is failing kids with disabilities and mental health issues.

I could go on about how experts state that early therapies are critical in the treatment of so many issues kids with developmental issues have – speech, behaviors, fine motor skills. Things that are needed to succeed in education. But we all sort of know that, because that’s the first thing people jump on. I mean, if you’re hungry, do you think “Eh, I’ll wait another week before I eat, it’s okay.”? No. But the state of Texas apparently thinks it is okay to deny kids with developmental disabilities and mental health issues what is basically nutrition for their brains – therapies and education.

And this is something we should all be concerned about.

“Why? I don’t live in Texas.” you may say.

You may not, but if Texas is allowed to get away with this, then other states will go for it. Because nothing says “Caring for the Community” like denying services to a 4 yr old with low muscle tone who can’t talk. Yes, that’s sarcasm.

Also, keep in mind the different new appointees to the Trump Administration.

Betsy DeVos – a product of private schools, and a champion of charter schools. Donald Trump’s plan for education has been to shake up public education, to give more monies to states who promote charter schools and private schools. Betsy DeVos is actually the perfect choice for heading up the Dept. of Education with that in mind. Sure, she has never been a teacher, or a principal, nor does she hold a degree of any sort in education. But she likes charter schools and thinks they’re cool. So does Trump. What could go wrong?

Well,  DeVos’s state of Michigan, it has proven time and again in Detroit that charter schools and school of choice doesn’t work. Charter schools go unregulated. Schools of choice are only good if you can get to them. If you’re a billionaire, the transporting of your child to school is a no-brainer. If you’re a single working mom with two jobs, three kids, and no car, then it gets a bit more difficult.

“Oh, but that’s Detroit. I would love to have a school of choice or charter school option!” you reply.

Then you probably don’t have a child with special educational needs. Because, as those of us with children with special educational needs know, it’s hard to find a non-public school willing to take on your child. And if you do find one, it will cost you. It will cost you more than your yearly mortgage payments perhaps. It will be like sending your kid to college, but for 12 years instead of 4, and no Pell Grants involved. I tried to see if there was any sort of special school for a child with moderate cognitive disabilities in the greater Seattle area. There were none I could find.

“But it’s okay. Maura’s in school and doing well.” you state.

Yes, she is. We love her school, which is a public one. But that doesn’t mean I can’t be concerned for others who aren’t in as good of a space as we are – which are lots of kids and parents. It doesn’t mean that I can’t be concerned that the man up for Attorney General feels that laws like the IDEA were “designed to help disabled children were to blame for a “decline in civility and discipline” in classrooms.”

I also get to worry because in Donald Trump’s plan for education, he has said more than once about the possibility of getting rid of the Dept. of Education and hand over the running of schools to the state and locals. And we can see what Texas is already doing with that even though they’re breaking federal laws designed by the Dept. of Education to protect our vulnerable students.

I get to worry because Paul Ryan has his eye on Medicaid, and Maura may need that in a few years. And Texas is already cutting those benefits for children who need therapy as of next month.

I am allowed to worry that there is a case up in front of the Supreme Court next month to decide just how much educational benefits a student with special educational needs must be provided with.

 

Listen – I get it. Kids like mine don’t come cheaply. But things like therapy, education, early intervention – these are sound investments. Because investing in them now, while they are young and growing, means that we give them a better start at life, that those who teeter between independent or not, could become independent adults. Every new bit of independence Maura gains means a little more time she can live at home with Mom and Dad, which, in the future, will be cheaper for the state than her being moved into a nursing home environment because we are unable to care for her.

But more importantly – my daughter and those like her, should be considered worthy human beings by the governments, both state and federal. They should be seen as human beings worthy of getting the help they need just as much as their able-bodied peers – because they are just as worthy as their able-bodied peers.

The state legislators of Texas is treating children like my daughter as an unwanted burden, and for that they should feel shame. They think they can get away with it because no one is watching, that it’s such a small percentage of the population, not enough to make enough noise to be heard.

What they don’t understand is how we in the disability world feel – you take on one, you take on all of us.

And we have friends.

If you love one of us, spread this message. Let the people running Texas, let the Supreme Court, let Paul Ryan, our president-elect and his appointees know – we’re paying attention. And we will fight the good fight every step of the way.

 

Want to tell people how you feel? Oh look! Handy links!

You can contact the Texas Legislator office at http://www.capitol.state.tx.us/

Links to Texas’s House Committee on Public Education committee members can be found here

Links to Texas’s House Committee on Public Health committee members can be found here

Paul Ryan has a website with lots of ways to contact him about how you feel about Medicaid cuts

If you want to drop a note to the Supreme Court, contact info can be found here

Joe Straus – State Representative and Speaker of the Texas House – has a website and a Twitter account

Betsy DeVos has a contact page on her website if you want to chat with her, and can be found on Twitter

And Donald Trump…well…you know he likes his Twitter

 

Babyface

5 Dec

The other day, Maura and I went out. Originally, the plan was to just hit the drive-thru Starbuck’s (of which there are 327 in a five mile radius of my house, because Seattle.) But then she spotted “the mall” – aka our local shopping center.

I thought “Well, maybe I can herd the girl to Hallmark’s, where she can pick out something Christmasy.” You know, because the girl loves all things Christmas.

What I love is I think I have control of these situations.

We got three whole minutes into the store before she was like “I’m out.”

We walked through the shopping center. She ooo’ed at the decorations (which were quite nice) and I dissuaded her from a trip to Old Navy (I have enough laundry). We wandered past the food court and to what Maura refers to as the book store.

It’s actually a comic book store. But it sells My Little Pony and Powerpuff Girls graphic novels. Hence, it’s a bookstore.

I love that there are graphic novels like these. Maura doesn’t quite read – not in a phonetic way. She’s learned up to 60 sight words, and can recognize things, but traditional reading is not something she’s getting yet. Graphic novels though tell the story through pictures, and she understands that. So yes, I’m happily plopping down a $20 bill so she can read the way she can read, and enjoy books.

Because she is my kid. She enjoys a good book.

We paid for the book of her choice – a classic Powerpuff Girls version – and headed back to the car with bribes of Starbuck’s. Once in the car, Maura was suddenly bent over the book, nose almost to page, studying it intensely.

 

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Suddenly, I had this moment to study her. My girl who, in her leggings and furry/suede boots and pink coat, was looking quite teenagerish before we left the house. But now, once again, I noted the softness to her face.

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It’s part of whatever it is she has, her Sherlock Syndrome. Her face is softer. It’s probably more of the low muscle tone that she has. Or it could be just regular genetics – when I was 13, people thought I was maybe 10, tops. When I was 18, people thought I was 13.  Maybe it’s a combination of low muscle tone and the family blessing of youthful looks. But she’s still such a kid. The baby of the family who has a babyface.

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Maybe it’s also partially my own filtering of things – in so many ways, Maura is still quite “young”. Other 13 year old girls are trying make up and considering dating and wanting to watch “Supernatural” or “The Walking Dead” or whatever parents have been deeming them too young to view but now they think they’re old enough. Maura isn’t like that. She’s still loving the same cartoon she watched four, five years ago, or more. Heaven forbid she finds The Wonder Pets on Amazon. Those little rodents still make her giggle.

Her progress is slow. Sloth-like at times. And other times, she will surprise you with her little newfound teen will and angst. She has discovered Supergirl, despite my trying to lure her to the Wonder Woman side of things. She likes Coldplay despite her aunt trying to influence her to the techno side of things. She has definite taste in clothes – I don’t even fight her anymore on styles, just sizes.

But then, there’s that moment, sitting in the car, her nose pressed into a Powerpuff Girls book and I am reminded yet again how she will live with us forever. Not in a bad way, or a burden-like way. Just in a “This is how things are” way. Because honestly? She and I get along so well, like things like going to bookstores and coffee shops and being sloths on the sofa together while eating pizza – what’s to complain about?

It’s just that sometimes, I look at her face and the softness to it, and am once again reminded that my baby is always going to be my baby in many ways.

 

 

 

The Theme Song of the Mom of Teens cannot be played

2 Dec

Well, not over headphones

Because teenagers steal headphones.

So now, I’m listening to music on the $5 ear buds my husband bought four dozen of because headphones disappear faster than socks in a dryer in this household. I’m just going to assume that they get hungry and actually eat the headphones. Because teenagers.

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