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Tag Archives: special ed

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

 

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I’m not THAT parent…I’m thaaaaaaat parent

8 Sep

The good news is, Maura has the same teacher as last year. So she is wise to my ways, no warning is needed.

However, I can admit, I am thaaaaaaat parent.

Which is different from THAT parent.

Let me explain…

THAT parent is a term in the special ed world for those parental units who come in with their heads slightly spinning, flames shooting out their ears, quoting educational laws while working very hard to refrain leaping over a table or saying “Are you fucking kidding me?”

I’ll admit, at one point in Maura’s educational career, I morphed into THAT parent. But I earned that title when the special ed director told me she didn’t need my signature on the IEP, I didn’t have to sign it…after a long year of this woman treating me like I was demanding unicorns and limousines for my daughter when I asked for seizure training for staff (who were like “Um, yes, please”) and a proper emergency health plan.

I know. I’m so unreasonable.

So yeah, I turned into THAT parent. It’s a bit like Bruce Banner going Hulk. It’s ugly and not fun for anyone involved, but sometimes, it’s necessary.

However, I’m really more thaaaaaaat parent.

Let me explain…

Thaaaaaaat parent is the one who has been in the world of IEPs and interrupted sleep and has watched the same episode of The Muppet Show, with very special guest star, Sandy Duncan, about 389 times that week.

You’re tired and maybe a bit socially awkward, and definitely hopped up on the caffeine of your choice. You’re not quite fit for human consumption, and you toy between realizing you’re in desperate need of getting out into more normal company and knowing you probably shouldn’t be allowed in polite company because you might talk about poop or your theory about Dora the Explorer.

After years of jumping through flaming hoops and having nonsensical arguments with your offspring over underwear, thaaaaaaat parent has definitely cracked up a bit. Add some natural sarcasm and lack of organization, and I’m sure I’m a joy to work with for some school staff. I mean, I’m the gal who at the last IEP meeting spilled an almost full grande latte across the table. I did manage to only get myself, and restrained myself from sucking the coffee out of my jeans.

And when presented with 193 school forms to fill out every year, I get ridiculous. I may also want to see who’s paying attention, or give them a laugh. Because if we can’t laugh at the sometimes ridiculousness of our lives, well, what’s the point.

That’s why, in filling out an information form for Maura, I did this –

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See? thaaaaaaat parent.

Meanwhile, as I was trying to organize my kitchen/dining room yesterday, I found a crumpled up sheet of paper with words on it. I smoothed it out and saw it was the “student technology equipment user agreement”. You know, the form I sign to allow the school to give my kid a laptop for the year, promising we won’t swim with it or eat the keys, and if we do eat the keys, we have to pay for the cost of new keys? The form I totally signed for one child?

I looked at it and thought “Hmm…I bet this is Maura’s.”

I checked my email later on that day and find a note from Maura’s teacher about how she sent home a new form, can I please sign it and return it so Maura can get her laptop?

I replied with “Hey, found a crumpled up one just today myself! Haha! I’ll send the form back in tomorrow.” Took the form out of Maura’s backpack, along with her student planner they give every student and we use for communication.

This morning, I go to sign the form…and can’t find it. I check around, and still can’t find it. I do find the crumpled copy though, and went “Well, it’ll do.”, signed it, stuck it in Maura’s folder, which I then put in Maura’s backpack…and wondered “Hmm…planner’s missing…”

But since we’re playing “guess how early the bus will be today?” this week (13 minutes from time we were told, four minutes earlier than yesterday) I threw the backpack at Maura and she ran to the bus. Emailed the teacher from my phone that she was getting the crumpled version back because I lost the new form.

Then sat down at my desk. Checked Facebook. Sipped on coffee. Moved my keyboard a little. And found the form and planner just there. Under my keyboard. Where I’d surely notice it.

So yeah. I’m thaaaaaaat parent. I warn the school I’m thaaaaaaat parent. Not that they couldn’t guess after I showed up at the IEP with green hair, spilling coffee everywhere.

It’s okay. Better to be thaaaaaaat parent than have to be THAT parent.

 

Post script – I love Maura’s school and the people who work with her. They are not only great with her, but great with me, lol! We’re very lucky to be in such a fantastic situation. 

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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