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.

Whistler’s Mother

Whistling comes naturally to some people.  Not me, though.  I didn’t learn to whistle until I was 15.  I’m still horrible at it, and can barely emit a sound lasting more than a second. My husband isn’t very good at it either.  Yet, for some reason, Connor has decided he wants to learn to whistle.

Connor:  “Whirsh.  Was that a whistle?”

Me:  “No.”

Connor:  “Whiiiirsh.  What about now? Was that a whistle?”

Me:  “No.”

Connor:  “Whirsh.  Was that one? Was that a whistle?”

Me:  “No.”

Me:  “You know, whistling takes a lot of time and practice to learn.  Maybe you should take a break and practice learning something else.”

Connor:  “Okay.  Thwish…thwish.  Was that a snap?”

Me:  “No.”

Connor:  “Thwish.  How about that, was that one a snap?”

Me:  “No.”

Connor:  “Thwish-thwish-thwish.  Was that a snap?”

Me:  “No.  Oh hey, look, it’s bath time!”

Later than evening we snuggled on the couch while Connor read from his daily reader.

Connor:  “Some cats are *whirsh* small cats and *whirsh* are known as *whirsh* domesticated house *whirsh* cats.”

Me:

Spectatorship Requires a Lot of Gear

So out of the clear blue, Connor starts talking about wanting to play soccer.  This began somewhere between turkey day and Festivus.  This was surprising because we had offered many options for extracurricular activities in the past.  You know, in case there was something he wanted to try out.  But there never was until this came up.

I am not a sports person.  I could care less about about playoffs and finals and whatnot.  But I’m all about supporting my kid if he wants to try something.

But this soccer thing has really been an adjustment.  For me.

First, I had to go buy one of those camping-type chairs that fold up and can be stowed in the trunk of my car.  It will be in the trunk of my car until the day I get rid of this car, because I never have time to clean out my trunk.  So I will always be ready to do some serious sitting around, in my fancy, foldable chair.

By the end of the season this is a total possibility.

The next issue has been the weather.  We haven’t had snow like most other places (don’t hate), but we’ve alternated between 50-degree days and 80-degree days.  Every Saturday when we set up our spiffy chairs on the sidelines, it’s a toss-up as to whether I’ll need a blanket or sunscreen.  Two weeks ago I froze my ass off, and had the sniffles for a week.  Last weekend I forgot to sunscreen myself, and I went home and passed out for two-hours, with a sunburn and probably heat stroke.

Yeah, this is me. What?

Now let’s talk about bathrooms.  I’m a 40-something (cough) mom with a bad back and a tiny bladder.  This whole soccer game thing has really wreaked havoc with my bathroom schedule.  They have bathrooms at the park, but like most park bathrooms, they are beyond disgusting.  And usually they’re out of paper.  And don’t take a chance on actually touching that seat.  So I’ve got to bring my own paper and be some sort of contortionist to try and use the facilities.  And I’ve got to be drinking something during the game, to ward off that heat stroke.

And apparently there is snack duty involved in sports.  I guess each parent can’t just bring a snack for their kid.  That would be too easy, especially since we all know what our own kids like.  Nope.  Each week we trade off being in charge of bringing snacks.  So I’ve got to carry my folding chair, sunscreen, blanket, toilet paper, AND snacks.

All this, to watch some 2nd graders play soccer for an hour.

But you know what?  I may have battled frostbite, heat stroke, dehydration, and filthy bathrooms, but it wasn’t all for naught.

I get to watch my son play as part of a team.  And I got to see him score his first goal.

And he is having FUN.

But most importantly, he feels like he’s part of something.  And for a boy that’s always been different, always struggled to fit in, it’s a BIG DEAL to be part of something.

It’s been worth every single discomfort.

Shining a Light in Dark Places

Although there is generally no shortage of differing opinions between autism parents, or different approaches to intervention, one thing we all have in common is our love for our children.  We also share the universal drive for them to be accepted in school and the community, to be understood, to be valued.

After the horrific events that took place at Sandy Hook Elementary, news reports and articles were seen everywhere, and a great many, in their haste to report something, indicated that the shooter was autistic, specifically, a person with Asperger’s.  That reporting set off a nightmarish chain of events in which ill-informed people, believing that autism could be attributed to planned violence, made hateful comments and put up Facebook pages calling for extermination of autistics.

Our community has worked so hard for so long to educate others about autism, and to acquire acceptance and inclusion.

It felt like more than defeat.  It was alarming.  Frightening.  We cried, and held our children closer, and we feared the backlash.

But then we got back to work.  We made signs to share across Facebook.  I made this one:

Others started sharing pictures of their loved ones, with meaningful descriptions.  Someone had an idea to put all the pictures in one place.  Tim Tucker, from Both Hands and a Flashlight, had a FB page that was empty, waiting to be used.  He offered up the page, as well as worked to create a website, and Autism Shines was born.

We couldn’t believe how quickly it grew.  Although it was created just a couple of days before Christmas, the FB page acquired 2,000 fans in less than 48 hours, and amassed a few hundred photos.  The website is now operational, and is gaining in popularity as well.

Such a simple concept.  A place to say, “this is my amazing, beautiful child,” as well as a place for adult autistics to say, “look at me, I’m just like YOU!”

It began as a tiny candle flame and is growing into the brightest light of hope and truth on the web.  It’s a place to say “we will not allow the darkness of the Sandy Hook tragedy to cast a shadow on our light.”

I hope you will visit and share your light too.  I shared mine.

This little light of mine…

Please visit the Autism Shines Facebook page here.

And the Autism Shines web page is here.

And a special thank you to the team of individuals who have worked on this project:

• Tim Tucker – blogger at Both Hands and a Flashlight and author of I Am An Autism Parent
• Jessica Watson – blogger at Four Plus an Angel
• Lexi Magnusson – blogger at Mostly True Stuff
• Flannery Sullivan – blogger at Living on the Spectrum:  The Connor Chronicles
• Jill Smo – blogger at Yeah. Good Times.
• Danielle A. – blogger at ProfMomEsq

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Flu Shots – Making Lasting Memories

When I picked up Connor yesterday, he glanced at my purse and saw the bright orange wrapper.

 

“Is that candy?  Can I have it?”

 

The reason I didn’t tell him earlier that I was taking him to the pharmacy for a flu shot was because he has a tendency to obsess over things like that.  I didn’t want him worrying about it all day.  But now I had to tell him that we were headed to the pharmacy, and the candy was his as a reward after he gets his flu shot.

 

“Shot?  I don’t want a shooooooooot!”

 

We talked about what happens when someone gets sick with the flu, and how we can avoid that by getting a shot.  I assured him that I had already been given my shot earlier that day, at work.  Still, it wasn’t until I said, “We have to, there’s no other choice.  And we have to protect grandma from getting the flu, because she’s old and it would be very bad for her to get sick,” that he quieted down.

 

An hour, people.  AN HOUR.  That’s how long we waited at Walgreen’s.  Luckily there was a mother there with a little girl, about three-years-old, for about half that time.  Connor grabbed a balloon they had to hype up the flu shots, and played, gently, sweetly, nicely, with that little girl.

 

He also cleaned me out of every damn bit of change I had in my wallet, enthralled by the wonder of the hyperbolic funnel donation container.

 

It spiiiiiiiins!

 

Finally, they called his name.  We went to the chairs behind the little make-shift curtain.  The pharmacist was really nice, and explained the shot to him.  Still, he pulled away.  Then she said, “It’s like a force field for inside your body, so the germs can’t make you sick.”

 

What’s that you say?  Force field?  You mean, like in Star Wars?

 

Sold.

 

I wrapped my arms around him, pinning his left arm to his side, and began counting to three.  She got that shot in and out in record time.  I said, “Look, she’s done, you hardly even noticed.”

 

“Where’s the hole?”, he asked.

 

We explained that it’s too small to be seen.

 

“I’d like an x-ray, please.”

 

That even took me by surprise.  I know we’ve talked about x-rays a couple of times, but I wasn’t ready for that kind of logical quick-thinking.

 

The pharmacist and I laughed, and told him they don’t do x-rays at the pharmacy.

 

“Okay.  My turn now.  I’ll give you a flu shot now,” he said to the pharmacist.  Of course, this brought more laughter, and she assured him that she’d already had her shot.

 

As we prepared to leave, she said, “He is so sweet and funny, I really enjoyed him.”

 

Now that’s something I’ve rarely heard about my child, and have never heard it from school, so it just about brought me to my knees.

 

I thanked her and smiled.  As we explored the Halloween aisle, I wiped that lone tear from my eye and laughed.  A flu shot.  A fucking flu shot just made my day.

 

I’ll take it wherever I can get it.

 

 

It’s What They Leave Out of Evaluations That Matter Most

My son is different from other children.

He has a diagnosis.

He has evaluations to outline his level of functioning and highlight his deficits.

The other children don’t have that.  They fit neatly into the box labeled “typical”.

The other day, we were in a store, and passed a woman in a wheelchair.  Connor asked me, quietly, why the woman was in a wheelchair.

“Well, I’m not sure, but either she has a disease or injury that makes her legs not work, or maybe she was born without the use of her legs.”

Connor’s only response was, “Oh.”  He was quiet for a moment.

But then, the familiar surge of extreme energy coursed through his body, he began to wriggle and smile, and his eyes brightened with a thought.  He let go my hand and blurted out, “I’m gonna go hold the door for her and be a helper!”  And off he went.

From several feet away, I heard him say, “I like your wheelchair.  I’ll hold the door for you!”

My son is different from other children.

He accepts people who are different from him.

It’s too bad the evaluations don’t highlight that.

How to Fuck Up Your Day in Three Easy Steps

Step 1:

Pick out a button-down shirt for your child to wear.  Yes, as a matter-of-fact you DO realize he hasn’t worn a button-down shirt for months.  Maybe a year.  And no, don’t let the fact that he has trouble with buttons deter you from choosing the button-down shirt.  When mini-meltdown ensues, stubbornly refuse to let him choose a different shirt because THERE ARE BUTTONS IN THE WORLD, and we must learn how to coexist peacefully with them, so PUT THE DAMN SHIRT ON.

Step 2:

Stare blankly at your child when he tells you the Chuck Taylor’s are too tight and hurt his feet.  Yes, the very same shoes he wore last week, with no discernible difficulty.  Try to change topics and distract him from focusing on his angst over your footwear choice.  Insist that the shoes match the shirt and THAT IS THAT.

Step 3:

Be sure to follow the two steps above on a day when you have this note:

No pressure here.

And really, that’s all there is to it.  Grit your teeth, wrap your fingers around the steering wheel in a death grip, and try not to leave tire marks when you peel out of the school parking lot because you were just berated for buying Kashi cereal bars, instead of the ONLY CEREAL BAR choice, Nutrigrain.

And try really, really hard to stop thinking of your child as a fire-breathing dragon.

Dear School District, My Son Is Not Just Another Brick in the Wall

There is a lot of great information to read out there about preparing for and participating in your child’s IEP.  So far, I have been fairly easy-going about the process, only putting my foot down during kindergarten to demand a functional behavior analysis (FBA), which is required to develop the behavior intervention plan (BIP).  This is something they do when you have a child with challenging behaviors, such as aggression or social skills challenges.

Connor’s goals have mainly focused on academics.  The teachers and SPED staff have done a fabulous job of pushing him to keep up with his peers, and I give them all the credit in the world for that.

But this year’s IEP has my hackles up and claws out.  They did it with one word, compliance.

This year’s IEP has only three goals, and two of them are about doing so many math problems in so many minutes (I could write a whole other post about those goals, as well as the lack of a social skills goal).  But the first goal on the list is:

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Goal:  The student will maintain compliant behaviors.

Mastery Criteria:  Given a directive from an adult, Connor complies by mastering the following objectives at the levels indicated below:

Objective 1:  Connor voices no refusal and follows through with the request made by an adult with 3 or 4 prompts and/or begins within 5 minutes for 24 out 30 consecutive days.

Objective 2:  Connor voices no refusal and follows through with the request made by an adult with 2 prompts and/or begins within 3 minutes for 24 out 30 consecutive days.

Objective 3: Connor follows through with the request made by an adult with 1 prompt and/or begins within 2 minutes for 24 out 30 consecutive days.

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Does Connor have problems following directions and doing what he’s told?  You betcha.  But let me go ahead and throw the flag and call BULLSHIT on this.  Here’s why:  the goal only focuses on the outcome the school wants, not the tools he will be given to be able to do this.

Let’s examine it more closely:

1.  Where’s the baseline data that tells us how often he is currently non-compliant?  I don’t see it.  How do I know he’s not already half-way mastered this goal?

2.  What tells us the reason he is non-compliant, since we all know that behavior is communication?  Well we would find that on the functional behavior analysis, which tells us that motivation is either for tangibles, escape, attention seeking, or sensory.  But that still doesn’t tell us why he doesn’t comply with an adult’s request.  It also doesn’t tell us when.  Or where.  Is he always non-compliant when asked to read?  When doing math?  This information is critical in understanding the motivation for the non-compliance.

3.  The goal is negative.  It tells us what Connor will do, which is to be compliant.  That’s it, just compliant.  It doesn’t tell us that Connor will learn how to manage anxiety.  It doesn’t tell us that he will learn any other skill, only compliance.  And compliance is not a skill.  The goal is written to make things easier for the school, not easier for Connor.

4.  The word “compliance” is better suited for the military.  I’m sorry, but the word itself just ignites a fire in me that wants to run out and start a rebellion.  These kids are not brainless robots, they are human beings.  And while arguing over doing a math worksheet isn’t quite the same as the sentiment to “question authority”, the overall goal is focused on restricting expression, rather than shaping it, honing it into a means of critical thinking.

Appropriate, no?

We spent an hour-and-a-half debating this goal.  The reality was that I stated all of the above as objections and it did not sway “the team.” That galls me to no end, to think I’ve been stroked and placated with statements of “you’re part of this team,” when the reality is that they will not budge on a goal that I have valid reasons to disagree with.

Five people at the table, all representing the school district.  One person at the table representing Connor…me.  Even though it was an unequal balance of power, I somehow stood my ground and managed not to cry.  Still, they did not budge.

Until I said, “we’ll just have to agree to disagree.”

See, the team does not want a parent signing off as “disagree” on the IEP acknowledgement page.  This is a bad thing.  So now we are keeping the current IEP in place so that the school social worker can finish up her 3-year re-evaluation, and then myself, the SPED teacher, and the district autism specialist will meet and try to hammer out some goals.

If a student has a BIP in place, then the school is required to have a behavior goal in the plan.  Since I’ve got a whole folder filled with samples of appropriate behavior goals, this should be no problem, right?

RIGHT??

This is not an indictment of all schools everywhere, or even of our own district.  My hope is that this will serve as a guide for other parents that are navigating the school system and IEP regulations, and will show you how to advocate for your child, and how to become an active player in the drafting of the IEP.

Follow ups to come in the next month, after our planning and follow-up IEP meetings.

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photo credit: <a href=”http://www.flickr.com/photos/7815007@N07/7249830848/”>Ken Whytock</a> via <a href=”http://photopin.com”>photo pin</a> <a href=”http://creativecommons.org/licenses/by-nc/2.0/”>cc</a>

Sh*t My Kid Says

Sometimes my kid is really damn funny.  True, he’s also a pain in the butt, but the funny sort of makes up for it, so it all evens out.

If I told you he was like a frenetic combination of Robin Williams and Jim Carrey, you might not believe it.  But the crazy energy never stops, nor does the comedy.

   

Here is my most recent top 3 funny stories:

1.  The other night, at bedtime, we were reading an Ironman book.  At one point, it mentions “throwing a party”, and my literal thinker wanted to know what that meant.  So I explained how it doesn’t really mean to literally “throw” something, like a ball.

The next night, after dinner, he took his plate to the sink.  He places it in the sink and announces, “I just THREW my plate in the sink.  You know, like a party.”

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2.  Last week, while reading at bedtime, Connor announces “I want to sleep without pajama pants tonight.”

“Uh, okay,” I respond.

He removes his pajama pants and asks, “Is it daddy’s night for back rub?”

“Yes,” I say.

“Will he give me a back rub with no pants on?”

Now I’m creeped out.  “No, daddy will have his pants on.”

“No” he says, “Will he rub my back if I don’t have pants on?”

“Uh, yes, he will still rub your back.  Goodnight, weirdo.”

“YOU’RE the weirdo!”

Yeah, we like to let the freak flag fly up in our crib.

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3.  Have you seen the Geico commercial with Eddie Money singing “Two Tickets to Paradise” to a family sitting in a travel agent’s office?  No?  Well Connor has.  He has spent the last three days singing “Two Tickets to Paradise” on an almost continuous loop.  He even holds his hand up like he’s holding tickets in it.

Won’t you pack your bags, we’ll leave tonight?

I tried to sing along with him, but he insisted that I stop immediately because my singing “is annoying”.

Rude.

I hope everyone finds something funny in their lives this week!

Symbolism Lost

Friday evening, as I was getting dinner ready, the doorbell rang.  I was instantly annoyed because I thought it was another Jehovah’s  Witness, trying to foist their good news on me which, inexplicably, does not involve cash or tangible prizes.  I say tangible because, well, the promise of a vacation may be more appealing to me right now than the promise of eternal life.

Anywho.

Imagine my surprise to find Connor’s SPED teacher at the door.  She was all smiles and handed me a white paper bag for Connor (who was in the shower), and said she’d see us (tonight) at “Meet the Teacher.”

Connor and I sat at the table together and read the note:

How cool is that?

We poured the contents onto the table, and I started picking up objects and asking, “What does this mean?”

Me:  “What does the rubber band mean?”

Connor:  “Uh, to shoot at things or put around something.”

Me:  “No, remember the note, it says the rubber band symbolizes a hug.”

Connor:  “Oh.  What does symbolize mean?” That’s a hard one to explain, by the way.  Have you tried explaining that one yet?

Moving on…

Me:  “How about the tissue, remember what that one means?”

Connor:  “Yeah, it’s for when you have really gross boogers.”

Me:  “What about the button?”

Connor:  “That’s for pants.  Or a shirt.”

Me:  “And the candy kiss?”

Connor:  “That’s to eat!!  Can I have it now?”

Oh well, it was a lovely and creative thought.  But the symbolism was lost on my super literal thinker.  I wish all teachers put that kind of effort into welcoming our anxious kids back to school.  It was a great way to ease the tension.

It was a great lesson for me, too.  I will be sending Connor to the door the next time the JW’s come around.  He will not rest until he extracts some actual good news out of them, and not just far-off stories.