The Truth About Special Education in Texas, Y’all

We’ve all seen the lists of things that other parents or family members shouldn’t say to an autism parent.  In light of the fact that I’ve had four IEP meetings this year, I thought I’d put together a list of things that school personnel shouldn’t say to an autism parent, based on my experience this year.

I’ve culled these little pearls from prior IEP meetings.  The most recent meeting this week was when we finally reached agreement on all of the issues.  Although they emphatically will not put into writing that his recess time is protected (because the “district will no allow it”), we’ve managed to add a number of behaviors to the BIP to prevent any interruption to recess.

1.  “We use positive behavior support, unless we think it’s a ‘typical’ behavior, then we will punish.”

Listen up.  If you are autistic, then all of your behavior comes from being autistic.  You can’t separate the person from the autism.  Everything the child says or does is through the lens of autism.  EVERYTHING.  Making this kind of statement tells me that you do not have a firm grasp on what autism is, or what it means to have a disability.

2.  “We’re trying to help him to be more like the other children.”

You just told Connor and me that he is not good enough or valued as he is.  You’re saying that he needs to “blend” in order to be valued.  It’s extremely insulting, as well as being detrimental to his self-esteem. 

3.  “We want to discourage him from wearing the noise-reducing ear muffs during assemblies, because in the real world it would be odd to walk around wearing them.”  (this was said in kindergarten)

Bitch, please.  If my child needs those ear muffs during assemblies because the noise is too much for him, then he WILL wear them.  You will not dictate what accommodations he needs.  Nor will you burden him with your “real world” concerns, especially when he’s just in kindergarten.  His ear muffs are no different than a cane or wheelchair.  Shame on you, for making your own prejudice painfully obvious.

4.  “He isn’t eligible for ESY because he has not demonstrated a regression in skills that can’t be recovered in six weeks.”

No, that is not the only criteria for ESY.  Although each state has their own rules and legal criteria, the following excerpt is from IDEA regs:

S. 300.106 Extended school year services.

(a) general

(1) Each public agency must ensure that extended school year are available as necessary to provide FAPE, consistent with paragraph (a)(2) of this section.

(2) Extended school year services must be provided only if a child’s IEP team determines, on an individual basis, in accordance with S300.320 through 300.324, that the services are necessary for the provision of FAPE to the child.

(3) In implementing the requirements of this section, a public agency may not –

i. Limit extended school year services to particular categories of disability; or

ii. Unilaterally limit the type, amount or duration of those services.

Do your research, and consult an advocate, if necessary, if you feel your child needs ESY and you are being denied, like we were.  We will be getting ESY this summer.

5.  “He knows what the rules are, he just chooses not to follow them sometimes.”

Yes, it’s called ‘autism’!  See, knowing what the rules are if asked and not being able to control your impulses are things that work in opposition to each other.  It’s not a purposeful, willful choice, it’s a lack of impulse control.  It will take him much longer to develop that impulse control.  Why not set up something he can earn for following that particular rule?

Lest anyone think they can sully my good name by insinuating that I’m not being truthful, or may be exaggerating,  I’m attaching a picture of part of a page of the IEP – the declarations page, which summarizes the conversation that took place during the meeting.

And this, my friends, is what special education looks like in Texas.  At least, in the Pflugerville ISD.  Texas falls at the bottom of the country for special education funding.  More than that, it lags behind in terms of disability understanding and awareness.  While many states forge ahead with respecting autism and other disabilities, and teaching to the student’s strengths, Texas still lives in a world where it’s considered appropriate for staff to say that the student needs to fit in and be like the other students.  THE STUDENT WITH THE DISABILITY MUST FORCE THEMSELVES TO BE LIKE THE OTHER CHILDREN, THE CHILDREN THAT DON’T HAVE SPECIAL NEEDS AND CHALLENGES.

Fuck you, Texas.

Systems don’t change overnight, so we soldier on.  The thing that helped drive us toward agreement was the fact that I employed a very tough advocate.  Although it was costly, it was well worth it.

And THIS is why I blog.

On the Sandy Hook Tragedy and the Lanza Family

There’s not much left to say about what happened a week ago at the Sandy Hook Elementary School, in Newtown, CT.  I’ve purposely avoided watching the news or reading too much online about the tragedy.  What happened is so inconceivable to me, the murder of innocent children and their teachers, that I’ve tried to keep my focus on my own family.

I know that everyone is struggling to understand how and why something like this could happen.  It’s our natural inclination to want to glean a specific reason for something that defies reason.

Unfortunately, the early reports about the young man possibly having Asperger’s Syndrome ignited and spread like wildfire.  There are people that grasp onto this as the thing that caused the incident.  Many in the autism community are working tirelessly to help make people aware that autism, or specifically, Asperger’s, is not a condition that typically lends itself to planned violence.

The truth is we may never know what combination of mental and emotional issues drove him to commit this atrocity.  There have been some articles that have quoted acquaintances of the mother, Nancy Lanza, as saying that she was a devoted mother who had her hands full.  It makes me wonder if things were what they seemed.

There’s a poem, by Stevie Smith, that comes to mind, called Not Waving but Drowning.

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Nobody heard him, the dead man,

But still he lay moaning:

I was much further out than you thought

And not waving but drowning.

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Poor chap, he always loved larking

And now he’s dead

It must have been too cold for him his heart gave way,

They said.

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Oh, no no no, it was too cold always

(Still the dead one lay moaning)

I was much too far out all my life

And not waving but drowning.

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And I have to wonder if, despite appearances, perhaps Nancy Lanza and her son weren’t waving, but drowning.

While there is nothing that could ever justify what took place, it doesn’t mean we shouldn’t seek to understand how and why someone could be driven to this kind of act, without jumping to conclusions about autism.

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How do we go forward, and how do we learn to identify those who may be drowning, so we can throw them a life preserver?  Because if we continue to swim past those that are drowning, they will eventually go under.

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If we truly want to honor the victims of Sandy Hill Elementary, we must be more assertive and aware as friends and neighbors; we must ask more questions, offer more help, and be more engaged with those around us.

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If you’d like to donate to the families of the victims of Sandy Hook Elementary, please click here for a link to My Sandy Hook Family Fund.

Politics in the Produce Section

 

Usually going to the grocery store on a Sunday, after 11am is a huge mistake.  If I go early on Sunday it’s a breeze, because it’s just me and the other heathens.  But I was lazy this weekend, and got a late start. 

Let ye all go forth and descend upon the grocery store like locusts upon a field.

Note:  For this post, my “inner” dialog will be written in parentheses.

While perusing the first strawberries of the season, I heard someone call my name.  I looked over, and saw the district autism coordinator (oh geez, summon a big fake smile, quick).  I’ve had mixed feelings and experiences with her (god, she doesn’t have any makeup on and looks like hell), so I wasn’t sure how I felt about the random encounter (AND she’s wearing sweatpants.  I have makeup on and jeans.  Awesome, I have the upper hand in terms of presentability.)

We talked for a minute about the budget issues.  The school district is bracing to receive 20 million less in funding this year, and many positions are on the possible chopping block, including hers.  She said she’s stressed because she has a son in college (lucky for her she doesn’t have a kid with autism to worry about), but she’s thinking of starting a daycare if her position gets cut (I wouldn’t let her dog-sit for me).

Because I’m selfish and single-minded, I steered the conversation toward the behavior intervention plan they were working on creating for Connor, at my insistence (because they’re slackers and shouldn’t need me insisting to have the obvious).  She says they’re working on “data tracking.”  So I told her that my original question was can an aide or someone spend a week shadowing Connor at recess, and helping with social skills on the playground, because that’s when he has a difficult time.  How hard is it to understand that a kid on the spectrum needs help and coaching to learn how to play with the other kids? 

“I’m sure we can find a way to make that happen.”  (standard bullshit answer)  So I reminded her that my initial question about a shadow was never answered in the onslaught of back-and-forth email between me, regular teacher, sped teacher, and her.  I was told about the social stories they read him (great, but forgotten by recess) and about his “motor time” (still useless at recess).  But no one could ever give me an answer about a shadow at recess to help with social skills. 

Oh yes, she assures me she will look into that (lying sack of shit).  And I remind her that it shouldn’t take me ten emails back and forth about something like this (and if they thought they would wear me down, they were sorely mistaken, because I will take it to the ends of the earth just to prove a point, because I’m that much of a bitch).  It should be common sense that a child with autism needs some help with social skills on the playground. 

I did not, however, tell her that I was completely aware that they were all using stall tactics to try and stretch this out to the end of the year (goddamn them to hell).  I also did not mention that I called the principal to request the behavior intervention plan to force them to include social skills training into his IEP (how can I make these people care half as much as I do about my kid’s success in school?). 

I’m not sure if our encounter will produce any results, but I thought it was fortuitous timing to run into her (why was her hair so freakishly dry??  She needs a deep conditioner…).    Maybe it was an unfair advantage to run into her and push my agenda, but autism isn’t fair, school districts aren’t fair, life isn’t fair.  And damn it, I have a job to do.

The Buttheads Make a Video

 

Today hubby and I were asked to be in a video that would be used to solicit possible donors to finance the Autism Project, through the University of Texas.  Like so many other states, the budget is being slashed, due to a deficit, and funding probably won’t be there next year.  Considering Texas is already at the bottom of the list for disabled services, it’s kind of a big deal.

But still, if you want people to fund your program, why would you pick the two of us?  Here’s a still shot of us:

Hey, huh huh huh, give us money!!

 

Me:  “Hey, uh, huh huh, there’s no money for autistic kids.”

Hubs:  “Yeah, no money.”

Me:  “Yeah, and if they don’t get some money, all they have left is  just the county provider teaching social skills to kids with autism with just a counselor and the kid.  Huh, huh, huh, no other kids.”

Hubs:  “Yeah, they’re gonna teach social skills to just one kid.  Huh, huh, huh, huh, no wonder those kids don’t know how to be social.

Me:  “Yeah, they’re dumbasses.  But next year they won’t have any money, so they’ll have to teach those kids with no counselor, so they’ll just use sticks and rocks.”

Hubs:  “Yeah, I love to rock out to Styx.  ROCK ON!!”

Me:  “You’re such a dumbass, cornholio!!”

Let’s hope they have some other parents with more thoughtful, constructive dialogue to raise the money they need.  The Autism Project really is the one bright spot in a system that is shamefully, embarrassingly nonexistent for people with disabilities.  The legislators of Texas have turned their back on the disabled population, especially for the low-income population.

Welcome to Texas.  Hope you’re not disabled, ya’ll.

Trophy Kid in the Making?

 

So have you heard of this term, “trophy kids?”  It refers to the recent generation of kids that get trophies just for participating (I did NOT get a trophy for driving to work on icy streets this morning, I’m just sayin’).  Apparently the point is that it builds self-esteem, so every kid feels important, whether they win or not.  There are those that agree with this and, obviously, those that don’t.  Those that oppose the mind-set claim it builds self-esteem, but turns children into self-indulgent young adults that feel like they “deserve” opportunities.  I can only imagine what the “Tiger Mom” thinks of this.

I’m not even sure I have an opinion about this (hard to believe, I know).  Building self-esteem is good, yadda, yadda.  Creating a generation of spoiled whiners is bad, blah, blah.  Anyway, so what was my point?

Oh yeah.  So, we have worked for months on shaping Connor’s positive behavior, while trying to eliminate the negative behavior which, for him, is all related to social skills deficits (hitting, pushing, etc.).  These behaviors always occur at school, not at home, so they work on it as well.  At home we have a prize box, and good school reports earns a prize from the box.  It was all fine and dandy, until recently, when he announced, “these prizes aren’t cool.”  What?!  Since when are matchbox cars and play-doh not cool?

NOT cool.

 

One day he announces,”I want a trophy.”  How does a five-year-old even know what a trophy is?  But okay, he’s telling me what he’ll work for, so I tell him he needs three straight days of good behavior at school. I’ll be damned, it worked.  So I had to scramble to find a trophy.  They’re not as easy to find as you would think.  BUT, they are surprisingly inexpensive at actual trophy shops!  Who knew?

I’m hoping that, in the near future, I won’t be building a massive trophy case to house his collection of “Good Job” and “Superstar” trophies.  I’m not TRYING to create a trophy kid, just a kid with functional social skills.

Look at that smile, that's just PURE happy! All that for the bargain price of $6.42.

My Happy Place is a Gas Station Car Wash

Saturday was the first day that sick boy felt better, and started acting like himself, meaning he was rambunctious, lippy, and super-active.  He was up most of Saturday night too, and probably only slept 4-5 hours.

So it was a surprise that, on Sunday, he was calm, focused, and well-behaved.  It’s a good thing too, because now hubby is sick and was in bed all weekend.  Late in the afternoon I announced that I was going to the gas station to fill up, and get a car wash.

“Can I come with you, Mommy?”  Little man had decided it was a dandy day to wear his superman costume, but I decided it wasn’t any worse than the occasional Texas attire that I see, which consists of John Deere shirt, cowboy hat, cowboy boots, and way-too-tight Wranglers.  He straightened his cape, grabbed Cowboy Woody (of course he did, it’s fucking Texas isn’t it?) and off we went.

Once the car was filled up, we went inside the store so I could get 44-ounces of liquid crack, and I let Superman pick out one candy item.  As always, he chose the mini M&Ms in the little tube, that sound like candy-coated maracas when you shake it. 

Back in the car, and driving into the car wash.  “Mommy, would you like a candy?”  I had to look back over my shoulder to make sure I had the right boy in the backseat, and complimented him on his sharing skills.  He actually gave me 6 M&Ms, which was pretty generous.

And then we sat in the car wash in complete silence, eating our M&Ms….me and Superman, and Cowboy Woody.  Maybe I have a smidgen of Asperger’s too, because I’ve always found the car wash to be an oddly soothing place.  Or maybe the boy picked up that trait from me.  Either way, it was the most peaceful, tranquil, relaxing 3 minutes of the last week. 

Maybe I’ve stumbled upon a new kind of therapy….

Not my car, but even just looking at the picture makes me feel all warm and fuzzy.

Creative Baby Proofing for Kids on the Spectrum

Now that Connor is nearing the ripe old age of six, I can finally look back and laugh (okay, I can at least chuckle) at some of the extreme measures we went too for his safety, and our sanity.

Securing the Fireplace

 We had a fireplace in the living room of our old house.  Connor was a year old, and had just hit his peak for mobility.  Although the base of the fireplace was well padded, the opening was, well, open.  Connor became obsessed about that fireplace, and made a beeline for it a hundred times a day (no joke, I stopped counting at 53 one day).

Now according to the plethora of baby books on my shelf, babies and toddlers can “be easily distracted by moving them away from an object, and giving them toys to occupy their attention.”  After trying this about 30 times one morning, I showed the book to Connor, explaining that he wasn’t following standard operating procedure.  He just toddled back to the fireplace like a drunken monkey.

Much research ensues.  Will I spend over $100 for a fireplace baby gate??  No, no I will not blow a hundie on a gate.  Much brainstorming ensues.  *lightbulb*

A few minutes later, and I’ve duct taped a large, flat piece of cardboard to completely cover the opening of the fireplace.  It’s not like we could ever use it anyway, with Mr. Determined around.  And just like magic, it was like the fireplace didn’t exist anymore.  He completely lost interest.  AND, I did it for the bargain price of $4.99, adding to my peace of mind and lovely home décor.

Mini blinds

 Mini blinds became a source of extreme fascination immediately after the great fireplace war of 2006.  Again, a gazillion times a day I was moving him away from the blinds.  The cords were secured up high, but he would grab at the actual blind and try to mangle it.  We were left with the only choice of having to always have the blinds pulled up if Connor was in the room.

Or were we?

Have you ever seen those annoying dancing hamsters?  They used to have them at Wal-mart, and the hamster would shake back and forth and sing some awful tune like “Kung Fu Fighting.”  Connor did not appreciate the beauty of the dancing hamster.  See where I’m going with this??

I started buying up those awful toys like they were bottled water after an 8.0 earthquake.  One hamster adorned every window sill in the living room which, again, only added to the charming décor.  The hamster’s didn’t induce fear, they just seemed to repel him.  I guess I can see why.

The oven

 Another source of mystery and intrigue in our house was the oven.  Again, many, many redirections, and many, many explanations of serious danger.

The answer to this problem came from the Target dollar bins (yet another reason why Target is the best store ever).  I found a set of 6 tiny, orange traffic cones, and promptly bought two sets.  OHMYF’INGGOD, how much better can you get when it comes to a visual cue???? 

Every night before I started cooking, I carefully set out the traffic cones, marking a perimeter around the oven.  It worked like a charm and kept the boy away from the oven/stove when I was cooking.

Sooner or later, all the above items lost their mojo, but by the time that happened, Connor was no longer very interested in any of those things.

Now we have a new challenge…keeping the boy OUT of our bedroom.  Maybe a combined effort of duct tape and cardboard, dancing rodents, AND traffic cones will do the trick.

Eggbert and the Cave Boy

A long time ago, I realized the futility of comparing my child to other children.  During the “dark period” of diagnostic uncertainty, I  did a lot of that.  It is not beneficial or helpful in any way.  But despite that, sometimes we find ourselves in situations where the comparison is right in your face, and you can’t avoid it.

That happened today, at the natural history museum.  It was a really pleasant day, and I was thinking about how smooth it was going, compared to outings of the past.  And then, we encountered the boy.  I named him Eggbert.

Here’s a picture of Eggbert:

Ok, it's not really Eggbert, but I swear he looked just like this.

We were at the exhibit with all the dinosaur skeletons.  Eggbert couldn’t have been older than 6.  His dad, Mr. Eggbert, was wearing a shirt that said “Dinosaur Pete.”  He didn’t work at the museum, so apparently he was just really into dinosaurs. 

And then Eggbert spoke.  “That dinosaur has a long neck, but the one with the longest neck is the mamenchisaurus, which is from China.”

Seriously??!

And then my little angel is in front of me, saying “Mommy, can we ride the elevator now?”

“And that one is a chasmosaurus…”

“MOMMY!!  I REALLY want to ride the elevator!  Can we ride the elevator NOW!”

“The pleurocoelus is from the early cretaceous.”  Show off.

“MOMMY, THE ELEVATOR!”  Yes, okay, that is, after all, why we trekked to the natural history museum…to ride the elevator.

Yes, Eggbert was one of those freakishly smart, super-genious kids.  I’m happy for him, seriously.  But riddle me this, Eggbert.  While the little super-genious might be brilliant enough to engineer an actual Jurassic Park, what’s he going to do when the velociraptors have his ass surrounded?  Pee his pants, that’s what.  That’s when my little Tasmanian devil child will come in handy, because he will open up a can of whoop ass on those fuckers.

So even when comparison is unavoidable, I can still see all the positive attributes of my little cave-boy.

Everything is Bigger in Texas, Except Inclusion

 

Here is an article from Disability Scoop, which ran yesterday.  This is the kind of thing that makes me sick to my stomach.

People With Disabilities Confined Involuntarily For Decades, Suit Alleges

By Michelle DiamentJanuary 27, 2011 

A class action lawsuit filed Wednesday claims three Texas residents with intellectual disabilities have been institutionalized for a combined 130-plus years without any review of their placements and they may not be alone.

The lawsuit filed on behalf of 4,200 residents of Texas institutions identifies three plaintiffs by their initials who were placed at state facilities during their childhood or teenage years and never left.

Today the three have spent between 32 and 60 years each in state care, according to Advocacy, Inc., a nonprofit disability rights group that brought the case.

None of the three have ever had an impartial judicial review to determine if they continue to need an institutional level of care, according to the lawsuit. Yet, professionals hired by the state have indicated that each of the three could be cared for in less restrictive environments.

“An entire class of citizens is being confined by the state of Texas, with no opportunity to challenge the need for continued institutionalization, despite changes in ability, commitment criteria and increased community services,” said Beth Mitchell, senior managing attorney at Advocacy Inc.

The lawsuit names Texas Gov. Rick Perry and a handful of other state officials as defendants.

 

So then I went to the Advocacy, Inc. site, and read some of their success stories.  There I found the following:

Opal

In 1934, 16-year-old Opal had a brief psychotic episode and was committed to the Austin State Hospital. The shame and stigma of Opal’s mental illness and staff’s discouragement of visitation caused her family to drift away from her. Opal did not hear from her family again until 1985, when her nephew — whom she had never met — learned of her at a family reunion and decided to find her. He began a long battle to remove Opal from institutions, where she had been living for more than 50 years. With help from Advocacy Inc., Opal got out of state institutions and won a $505,000 verdict against the Texas Department of Mental Health and Mental Retardation for negligently subjecting her to “institutionalization syndrome.” Opal died on March 15, 2005, after spending several happy years in the community, reconnecting with old friends and family members.

 

So if you’re ever considering moving to Texas….

Morons with Grapes

Come on, just try them!

2011 brings us good news that makes me super excited.  We are one of six families that the UT (University of Texas, Austin) Autism Project will be working with.   It’s a great opportunity, and I’m optimistic that we will see some positive results at the end of this six-month endeavor.

One of the grad students will be spending several hours a week in our home, working with Connor using ABA therapy.  While this really impacts our weekly schedule, it is so worth it to make the accommodations for this to happen.  In fact, we’ve already seen positive results.

Drew has been to our home twice to begin working with Connor.  Connor thinks he comes over just to play with him, which is just fine with me.  This past weekend, after playing for a while, Connor came to ask for a snack.

“It’s almost dinnertime, if you want a snack, you can have either applesauce or yogurt,” I tell him.

“How about cottage cheese?”

“No, applesauce or yogurt.”

“Ok, yogurt.  Do you want some yogurt too, Drew?  Wait, we have grapes.”  I was surprised he even thought to offer his “friend” a snack, let alone mention the grapes, since he has always refused to eat them.

Drew said he’d prefer grapes, so Connor brought a yogurt for himself, and the bowl of grapes.  Drew started throwing grapes in the air, and catching them in his mouth.

“Ohhhh, that’s cool,” says Connor.  “I want to try that.”  So Connor starts throwing grapes up, and trying to catch them.  It didn’t go well, but in the process he managed to gobble down about twenty grapes.

I buy grapes all the time.

I eat grapes a lot, too.  But every time I’ve offered some to Connor, he says, “No, I don’t like those.”

“But you’ve never had one,” I tell him.

“Well I could have one, but I won’t like it, so I don’t want one.” 

Alrighty then.

Somehow, it never occurred to me to throw them in the air to eat them.

And just like that, we added a new food to Connor’s very limited menu.  Food has been a challenge since the very beginning, since we began the transition to solids from baby food.  We’ve never been able to figure out if it was a texture issue, or what, exactly.  We just know that expanding his menu has been a pain-staking process, and the hard-ass approach doesn’t work.

As parents, we have been creative in ways I never imagined.  But I just can’t believe that it never occurred to me to throw grapes in the air. 

So now I’m wondering, what kind of fun thing can I do with salad to entice him?