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Category Archives: special education

10 Things Autism Families Want Teachers to Know

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Parents of autistic children want the same things other parents want for their typically developing children. We want our kids to learn, grow, and be nurtured in a quality school with good teachers. We also want our children to have the supports necessary to give them equal footing (to the extent possible) in the classroom.

 

Although there are federal and state laws in place to guarantee the rights of our children to receive free appropriate education in the least restrictive environment, most people would be surprised to know how much support varies from one school district to another.

 

While we hammer out the details of the IEP for our kids each year, we know the truth is that success often hinges on how capable and willing the teacher is to teaching our children in a way that respects their differences.

 

Special needs parents talk to each other a LOT, and there are some universal truths that we want teachers to know.

 

1. We don’t punish our child when we he gets a math problem wrong. Please don’t punish him for making mistakes with social skills and behavior. Help him learn those skills in a positive way, not a punitive way.

 

2. Just because you’ve heard of Temple Grandin or John Elder Robison doesn’t mean you know everything you need to know about autism. Parents can offer a wealth of knowledge and resources, so try and be receptive.

 

3. I know you’re very busy managing the needs of all the children in your class. I realize that my child’s needs are sometimes greater than those of other children. If you communicate with me frequently, I can help you make things more manageable.

 

4. Behavior is communication. Instead of reacting, take a moment and figure out what is being communicated by the behavior.

 

5. If you feel the need to tell me that my child argues with you or speaks to you like you’re equals, then you don’t know enough about autism yet. Ditto if you tell me my child was playing in the bathroom sink.

 

6. Read the IEP and behavior plan and follow them. Parents agonize over getting the supports right for our children and we don’t appreciate IEP violations. Neither do your administrators.

 

7. Try and remember that we are utterly exhausted and often feel like a giant, exposed nerve. We know we shouldn’t have to fight to get our kids the supports they need in school, yet we end up doing it year after year.

 

8. We know the value of a good teacher more than anyone, and we will bring you gifts throughout the year to keep you happy.

 

9. We also know pretty quickly if we’re dealing with a teacher that isn’t inclined to do more than absolutely necessary to help our child learn. It will be a long, unpleasant year for you.

 

10. Our children are much more sensitive and aware than you may think they are. We would really appreciate it if you can help them feel accepted and part of the group, instead of different.

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There are so many talented, caring teachers out there, but there are just as many who aren’t as knowledgeable about autism and special needs as they could be. Parents want to work with you to make it a successful year. A big part of that is respecting our child’s differences and understanding that they don’t have to be like everyone else to be valued.

 

Make no mistake, there is a lot of effort and learning involved in supporting our kids. But most parents will make it worth your while by plying you with coffee, cookies, and Target gift cards.

 

My kid was arguing with another student in class and instead of doling out punishment you distracted him and redirected him to something else? I really hope you like brownies.

 

If parents and teachers engage in a partnership of learning, we can help make every year successful for our kids. Remember that they’re working hard just to get through the day and they need to trust that you will help support them. We need to trust that, too.

 

All Children Can Learn

The Truth About Special Education in Texas, Y’all

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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.

IEP

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.

Opening Old Wounds

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There comes a point when you’ve made peace with your child’s diagnosis.  You’ve got supports and therapy in place that work for you and your child.  You’ve had the IEP meetings, and assured that your child is getting the help they need academically.  The routine is in place, and things are moving along fairly well, and you’re feeling…in control.

And then…

Report cards or test results come home from school, as they did here, yesterday.

Last month they administered Cognitive Ability testing to the 2nd graders.  Reading the results, it was like being kicked in the gut.  My throat closed up and I fought back tears.  My mind moved toward an imaginary future, with scenarios of what my son’s life might be like, based on my own fear.  Horrible thoughts of what might become of my son someday, when I’m gone, assaulted me.  It felt like all the hard work we’d done just wasn’t enough.

Luckily, I’ve got a very supportive online group that I can go to when I hit a bump in the road.  They reminded me of some very important things, and I want to be sure to pass on this wisdom to you, should you find yourself in a similar dark place.

photo courtesy of PBS kids

photo courtesy of PBS kids

1.  Your child-MY child, is exactly the same person as they were before you received feedback about their level of functioning.  They have not changed in those few moments.

2.  Our children don’t always test well.  Reading comprehension is often a challenge for our kiddos on the spectrum.  The stress that accompanies taking a test can also inhibit their performance.

3.  Whatever the test or assessment, is does not DEFINE your child.  Our children define themselves, and we are there to support them.

4.  Academic tests are not created for children that learn differently.  They’re created for the “typical” child.  Think of giving an english-speaking child a test written in Spanish.  They’ve been set up to fail because the test isn’t in their language, just like most academic tests are not in our autistic children’s “language.”

5.  If you don’t have a support system, find one.  There are many online communities for special needs parents.  But it’s imperative that you have people you can talk to that understand the situation, and can offer words of support and encouragement.

6.  Remember that you don’t control the future, you can only control what you do right now.  Letting your imagination take you down dark alleys will only lead to anxiety and depression.  And it won’t help your child.

7.  Use assessments and test results to your child’s advantage.  I plan to have the results at our upcoming IEP meeting, so I can specifically ask how they will address his learning style to tackle areas where he struggles.  And we will talk about whether he needs to be in a smaller classroom setting, getting more individualized attention.  Turn test results into tools for gaining more support for your child.

8.  Allow yourself some time to feel down.  It’s normal and it’s okay to have those feelings.  But don’t allow yourself to wallow there, because you’ve got to be ready to pick up and move on, to secure whatever support your child needs.

9.  Accept.  Accept that your child may lag behind, or not excel in certain areas.  Get the support your child needs, but remember not to push too hard, or have unreasonable expectations.

10.  Love them.  No matter what the future holds, no matter how well they’re doing in school, or how poorly, they are still your child.  Don’t be robbed of the precious moments you have right now, by worrying about a future you can’t control.

courage

It’s so easy to let things like this open up old worries, old hurts.  The important thing is that we keep moving past that, and remember that our children are learning and growing every day, no matter what a test or assessment says.  We will be there with them as they continue to grow, and we will hold their hand and meet the future with courage and bravery.

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>

Symbolism Lost

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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.

Turning Lemons Into Vodka, Because I Don’t Like Lemonade

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Part of the angst that fueled my ranty post a week or so ago was what came home in Connor’s backpack the last week of school.

First, let me back up.  During our IEP meeting this year, I asked about ESY (extended school year).  The principal said that ESY was ONLY for children that displayed significant regression of skills that could not be recouped in 10 weeks.  Now, I’m not sure how they measure “significant regression”, but they assured me that Connor does not have that issue.  And while I agree that he doesn’t have “significant” regression, I do think that a long summer break will impact his skills.  But we were at an impasse, and it wasn’t an issue I was prepared to take to mediation.

Fast forward to the last week of school, and take a look at all this stuff that came home.

They must be joking, right?

Now I don’t know this for a fact, but I’m pretty sure that the other students didn’t bring home this many workbooks and extra assignments to work on over the summer.  It’s obvious to me that they are expecting us to set up summer school at our kitchen table, and drill this stuff into Connor all summer long to maintain his readiness for 2nd grade.  And really, I get it.  I get that the district has a very tight budget, and they have to cut corners everyplace they can, which means it’s probably almost impossible to “qualify” for ESY services.  And yes, that sucks.  And yes, it’s irritating.  But I just can’t waste the energy being mad about something that I can’t change at this stage, nor am I convinced I want to change it because I’m not sure I really want Connor to be stuck in a classroom during the summer, when other kids are out having fun, because that would almost be like he was being punished for having a disability.

But, um, yeah….all those workbooks?  Yeah, that’s not going to happen.  We already have full-time jobs.  But, BUT, there will be some effort.  Like on a scale between 1 and 10, I’m shooting for a solid 3 in effort.  I’m good with a 3.

About the time that the landslide of workbooks came home, I was reading a post over at A Mom’s View of ADHD, and it was a review for a task chart from The Victoria Chart Company.  I thought the charts were really cute and well-done.  We’ve done homemade charts before, with varying degrees of success.  But I liked the looks of this chart, and how it came with customizable stickers, so I ordered one.  [Note:  I am not being compensated in any way for mentioning this company or their product.  When I run across a product I like, that works for us, I like to mention it so others can check it out.  But that doesn’t mean I wouldn’t do an honest product review if a company asked me to, just sayin’.]

Connor and I talked about things he’d like to work towards, and he came up with roller skates, a trip to Chuck E. Cheese (yeah, I’m screwed), a Twister board game, and a new game for his DS.  The goal that we work on consistently is “keeping hands to self”.  We continued that goal for summer camp and assigned the Twister game to it.  By earning 5 stickers (1 for each day he has kept hands to self at summer camp), he earns the game.

As for the skates, they are the big Kahuna and worth 10 points.  And what must he do to earn those points???  Read a book.  Not like War and Peace or anything, just one of those early reader books.

And guess what?  He earned those skates in 2 weeks.  And the Twister game has been earned too.  It’s all about the incentives, baby.

Perilously close to mouse hell.

So now we will replace the skates with a new DS game as an incentive for reading, and see what we’ve added at the bottom?  A trip to McDonald’s (he likes the skeezy playscape, shudder) for completing 5 worksheets.  We didn’t really need that other goal of eating all his food, because he does that, and then some.

Yes, I’m aware that those are pretty big prizes, but the key to making a chart work is knowing what currency works for your child.  There’s no way he’ll work for little, junky dollar-bin toys.  And it’s summertime, so there needs to be fun activities on the hook to keep him interested.

It’s totally worth it.

Especially since I ran into his sped teacher this weekend at Walmart.  When she asked how Connor was doing, I replied, “he’s doing great, he’s already read 10 books this summer and earned himself some roller skates, and we’re only 2 weeks in!!”

He might never LOVE reading, but he will always love doing fun things.  This way it’s a win-win for everybody.

Except me, when I end up spending an afternoon at Chuck E. Cheese, with a million screaming kids and no open bar.

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Autism, Standardized Testing, and Hey, Why Don’t We All Just Move to Finland?

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There’s a new thing I’m doing that forces the teachers to remember that I’m part of Connor’s “team” at school, and it keeps me informed about any issues that are going on. What I do is I meet with his resource teacher every month now, and it seems to be working.

Last week was our monthly meeting, and we discussed progress and challenges. Towards the end, we somehow got on the subject of testing, and the standardized testing that starts in third grade. I casually mentioned that Connor didn’t need the extra pressure, and that I would be opting him out of testing when the time came.

“But you can’t opt-out of state testing”, she said.

“Yes I can. People do it. There is a way to opt-out.”

And the kicker was when she said, “I’ve never heard of anyone in this district opting out of testing.”

Now granted, she teaches K-2nd, and is not directly involved with testing, so she probably isn’t up-to-speed on things. And she did agree with me about how standardized testing has had a negative impact on teaching.

But damn. A teacher wasn’t even aware that you could not be forced to take the standardized tests.

Not that opting-out is right for everyone. But I happen to believe that standardized testing has narrowed the scope of teaching so that teachers are focusing more on test-specific material, and losing out on other teaching opportunities. It forces them to keep a pretty rigid pace in class, which means that they can’t afford to spend an extra day of class time exploring Mark Twain’s other literary contributions if a class has shown particular interest in him after reading The Adventures of Tom Sawyer.

In addition, many school districts instruct their teachers to identify their “bubble kids”, children on the cusp of meeting proficiency but needing extra help, and putting in extra time and focus on those children. This leaves children that are further behind and desperately in need of extra help left behind.

You know what else is interesting about standardized testing? There’s about four companies that produce the bulk of the testing materials, and they are making an ass-ton of money. Which means, lots. Lots of money being made to produce the testing materials mandated by the government under No Child Left Behind. Money coming out of our school districts. Money that isn’t being used to provide services for special needs kids, or extra support for typical children that need additional help.

In addition, these tests aren’t necessarily making our kids any smarter. Finland continues to score top marks in education, year after year. They do not have standardized testing, but instead assign less homework and promote more creative play. They also have no private schools, even on the college level. So people attend school equally from elementary to college. The most interesting quote I read was that “education has been seen first and foremost not as a way to produce star performers, but as an instrument to even out social inequality.” But see, that’s not what we’re about here in America. We’re about individual achievement and standing out.

But I can put all that to the side when I consider standardized testing for Connor. The thing is, he’s already stressed from the pressures to keep up with his peers. He’s always just a bit behind the others, and works hard to keep it together at school all day, only to come home and do more homework at night, in an effort to “catch up”. He has learned so much this year, and has come so far, but it has not been easy. When I think about adding the intense pressure of testing to that load, I can’t even fathom how he would manage.

And why should he? He is learning, he is working as hard as he is able to work. That is enough for me.

In a year-and-a-half, I might be the first and only parent in our school district to opt their child out of testing. Am I worried?? Nah, I’ve been raising a child with autism for almost 7 years now, they don’t scare me. But it is Texas, so if you don’t hear from me….

Here are some official references and stuff, because I’m a sophisticated writer like that.

Bubble Kids:

http://www.washingtonpost.com/wp-dyn/content/article/2009/04/19/AR2009041902096.html

http://eduratireview.com/2009/04/excessive-focus-on-bubble-students-html/

Test Materials Publishers:

http://www.rethinkingschools.org/special_reports/bushplan/test192.shtml

http://www.pbs.org/wgbh/pages/frontline/shows/schools/testing/companies.html

No Child Left Behind:

http://www.npr.org/2011/04/28/135142895/ravitch-standardized-testing-undermines-teaching

Standardized Testing Outcomes:

http://www.saturdayeveningpost.com/2011/08/16/in-the-magazine/trends-and-opinions/american-schools-crisis.html

Education in Finland:

http://www.theatlantic.com/national/archive/2011/12/what-americans-keep-ignoring-about-finlands-school-success/250564/

Opting Out:

http://optoutofstandardizedtests.wikispaces.com/

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