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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

Two Children, One Spectrum: School Support

two children part 7

 

Welcome to Part 7 of our series, Two Children, One Spectrum. Jen, from Anybody Want a Peanut, and I continue to describe the similarities and differences between two children diagnosed on the autism spectrum. Today’s topic is about the kinds of support our boys receive in school.

 

Moe:

School was a disaster for Moe. I could write an entire blog about how the school failed us and our ongoing issues with our district. So for now, we home school Moe. We run an ABA-based program out of our house, with therapists coming to work with him throughout the day. It is a highly scaffolded curriculum that combines early academic skills (sorting, matching, letter recognition) with behavioral and communication goals. Because both I and my husband work, we also hire very well qualified caretakers to be with him. Our wonderful nanny continues the programs throughout the day but also takes him out—to lunch, to the store, the park, etc.

 

This program has its benefits and drawbacks, but right now it is the most flexible option we have and it is one hundred percent tailored toward Moe.

 

The flip side of this is that no one denies his need for services. They may not always be appropriate or effective services, but because of the severity of Moe’s disability, we rarely have to “prove” his need for most services like special education.

 

Connor:

Appropriate school supports are critical for our kids to succeed in school. Getting those supports is sometimes very difficult because the system is set up in a way that keeps parents in the dark. I can’t stress enough how important it is to be familiar with ADA, FAPE, IDEA, and your district regulations.

 

Connor is in a regular classroom throughout the day. He is pulled out several times each day for motor time in the resource room. This is critical for him because of the severity of his ADHD, and the fact that schools now provide only one recess break each day. Don’t get me started on how insane I think that is, or how we’re pushing our kids way too hard. I’ll save that for another post.

 

He also has an aide come into the regular classroom to assist during math time. He needs the personalized attention because he has trouble keeping up without it. He also has preferred seating near the teacher, extra time for tests, and homework accommodations.

 

Due to behavior challenges, his IEP also includes a BIP (behavior intervention plan) where behaviors are outlined along with the protocol for positive behavior support. The trick with the BIP is that the school will take a punitive approach to any behavior not specifically outlined in the BIP, which generally means taking away recess time. Yes, the idea of taking recess time away from an ADHD kiddo is insane. I’ve spent the last few years fighting at every IEP meeting to end this practice. The best I could do was to get them to include in the IEP that he would never lose ALL of his recess time, and would only lose up to 10 minutes, if needed. I am not happy with this at all, but I’m also aware that you have to pick your battles carefully.

 

He’s also received ESY (extended school year) the last couple of summers. I was told that he did not show the required measure of skill loss to qualify, so we tabled the meeting and agreed to reconvene. I brought in stacks of paperwork from the state and the district that outline all the criteria for determining ESY and, wouldn’t you know, they agreed to provide it. Academic performance isn’t the only factor for determining ESY eligibility. If behavior is anticipated to deteriorate because of the routine change during the summer then they must consider ESY.

 

One last thing I want to mention is that you have the right to request an independent educational evaluation (at the school’s cost) if you don’t agree with the school’s eval. We did this a couple of years ago and it was very helpful. We did not use someone from the school’s list, but chose our own. I’ve found that a third-party eval can be a very effective tool in planning goals and supports for the IEP.

 

We’ll be back next Tuesday and cover the topic of medication. Thursday will be Christmas, so we will reconvene the following week with the last two topics.

 

If you like the series, be sure to share!

My 4th Grader’s Letter to the Boy Scouts of America

When is the “right” time to discuss sexuality, specifically homosexuality, with your child? Until today, I didn’t have an answer for that question. But today when I picked up Connor from school, he asked me if I knew about the Boy Scouts of America (BSA).

 

(deep breath)

 

I explained to him that I was very familiar with them. And I decided to explain to him why we never pursued membership for him with their organization.

 

“What does ‘gay’ mean?”

 

So I told him that it’s when a man wants to date or marry another man, or a woman wants to date or marry another woman. And I told him that there’s nothing wrong with that, it’s just the way they were born. Some of us are born to love someone from the opposite sex, but not everyone.

 

“It’s not terribly different from being born autistic, it’s just the way you are.” I told him.

 

And we talked about their rule that members must believe in God. He asked me, “Did their God tell them not to like gay people?” And, of course, I told him the truth.

 

While we worked on homework, he looked at me and said “I don’t like the rules those Boy Scouts have.” I asked if he wanted to write them a letter and, to my surprise, he said he did. Writing has always been hard for Connor, so I helped with spelling, punctuation, and paragraph spacing. I prompted him to tell them who he is and where he goes to school. But the rest of the words are his alone. And he felt very strongly about adding the sad faces.

 

unnamed

 

There is simply no way to describe the kind of pride you feel as a parent when your child shows you that they care more about what’s right than what everyone else thinks. This parenting gig is HARD, no doubt about it. But days like this are what keep us going during the more challenging of times. I think this one will keep me going for a good, long while.

 

I Don’t Want a Compliant Child

As far back as I can remember, I was non-compliant. There needed to be a good reason for me to do what someone was asking, or chances were high that I wouldn’t do it. In fact, one of the words I hate most in the world is “compliance”, as well as all its derivatives. Hearing the word makes me feel instant RAGE. It’s not just taken as a personal insult, but as an assault to my person when someone requests or demands my compliance.

It’s just the way I’m wired. My extreme visceral reaction is completely out of my control.

You see, words are alive for me. They’re like art and music, fine-food and instruments of war. The way they’re strung together can create the soaring crescendo of an aria or the somber notes of a dirge. I like the way words taste and feel, the way they engulf me with emotion. Words are powerful tools, capable of defining social and political realms. They give meaning and definition to that which was without meaning. They manipulate. They conspire. They transform hormones and neuron function into awe-inspiring proclamations of love and devotion.

And, of course, they can also elicit strong negative reactions. Merriam-Webster online defines the word compliant this way:

com·pli·ance

noun \kəm-ˈplī-ən(t)s\: the act or process of doing what you have been asked or ordered to do : the act or process of complying

Full Definition of COMPLIANCE
1a: the act or process of complying to a desire, demand, proposal, or regimen or to coercion

b: conformity in fulfilling official requirements

2: a disposition to yield to others
3: the ability of an object to yield elastically when a force is applied : flexibility

Further, they list the synonyms for compliance thusly:

Synonyms: acquiescence, biddability, compliancy, deference, docility, obedience, submissiveness

The moment someone uses the word compliant as a personal expectation, I feel like I’m wrestling to free myself of the yoke being thrown over me.

noncompliant

I’m a dynamic and capable human being, and I don’t want to be docile.

No matter who you are, what kind of job you have, how much money you’re worth, or how important you think you are, I am your equal. I will not be submissive to you.

This is my natural state of being, to value freedom and autonomy above all else, just as it’s the nature of others to follow, to crave routine and rule and structure, to comply. I need free will like I need air and water. While others fear the chaos and uncertainty that accompanies radical individualism, I fear the consumption of my soul by willfully relinquishing my ability to think and do for myself.

For me, compliance is a word on par with indentured servitude. It robs people of fire and passion and leaves in its wake a grinding monotony and grim acceptance of a life painted in hues of beige and gray.

Connor, my beautiful spark of life, burns so bright and white-hot that it hurts my eyes. He is so full of love and joy and spirit that you can almost see him coming apart at the seams. He has no more interest in the idea of compliance than a butterfly has interest in car insurance.

Ah, but public schools…this ugly word is dragged out at almost every IEP meeting. It’s written into goals, as in “Connor will demonstrate compliance with adult requests on at least three out of five trials.”

With all the richness we have to choose from in terms of our language, why do schools choose to apply words to our children that invoke such ugliness? Instead of compliant, can’t my son work on being proactive, cooperative, or accepting? What about amicable or harmonious, collaborative or affable?

We have another IEP tomorrow, and I suppose that what I’m getting at is the way in which the language we choose to apply to someone frames them in specific ways. Do we want our children to be blindly compliant, or do we want them to be thoughtfully cooperative? Do we prize conformity and indistinguishability above individualism? Do we want teachers to measure our children’s worth in terms of compliance, or some other measure?

If we want to see a change in how our children are treated in the public school setting, it may be advantageous to begin by changing the language that’s used in describing our children, and identifying what their goals should be.

Some may say it’s just a matter of semantics, but I would argue that our children will either rise to our expectations or fall under the weight of our our demands. I’d much rather see my son rise and learn the value of cooperation, than to fall beneath the burden of being rigidly compliant.

But again, I’m biased. As a non-compliant person, I tend to buck the system. And I’ll continue to do so, by refusing to never again sign an IEP that contains the word “compliant”.

Parenthetical Advice

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Hi. November was a crazy, hectic month between the holiday and trying to keep pace with NaNoWriMo. Prior to that, there were a couple of school meetings that I wanted to write about, because the result was getting some better support and extra accommodations for Connor.

The beginning of the school year was quite rough, and I called a meeting in September to talk about supports. One thing that came up was that after I dropped off Connor in the morning, he wasn’t showing up in class until 10 minutes after the bell. I asked the principal if she thought we should address the issue (The reason I called the meeting was mainly to discuss this very issue. But there’s a game of charades that goes along with parenting a special needs child. You can’t make demands and voice your disapproval and really gain anything. That’s because it’s all a game of ego-stroking. Much like real life. So one must smile like a half-witted court jester, and ask seemingly stupid questions, like “Do you think we should address the issue of my autistic child going missing for 20 minutes each morning?” When the answer is, OF COURSE WE SHOULD. But the staff at the table know full well that they are in a precarious position and the district could face a lawsuit, so you sit there and politely ask, “What should we do?”). The principal was very willing to work with me and decided to appoint a teacher to be on hallway duty and be responsible for being the point person for Connor, and ushering him to class.

With that issue resolved, we moved on to homework. The pressure of a 7-hour-day spent holding himself together as best he can builds up and releases when we get home. Having him sit and do homework that goes on for more than 20 minutes just causes more frustration and meltdowns. So I decided to ask the staff about homework accommodations (Hey. Kids with IEPs are supposed to be provided with accommodations. It’s like, the law. So basically I sat there and asked for something which I knew we were already entitled to, but in doing so I transferred the illusion of power across the table to the people that could make this the best year ever, or worst year ever, for my son.) We were able to negotiate limiting math homework to 15 minutes. In addition, since writing is such a challenge for Connor (And it will likely always be a challenge. I’ve had the school conduct two OT assessments in which he barely scored in the passing range and has not “needed” OT provided by the school. So that is an important point to absent mindedly bring up at convenient times like this. “Well you know he struggles to write, even though he hasn’t needed OT, according to the school eval, but maybe we can find a way to accommodate him so that I don’t go requesting an expensive independent eval?”) I asked if his nightly Reader’s Response question could be answered via my recording it, instead of him having to write it out. I stressed that the point of the Reader’s Response was to get them thinking critically about what they read, so removing the pressure of writing would make it easier to focus on that. The teacher agreed and now he reads nightly and I use the record feature on my phone to ask the question and get his answer. Then I just email it off to the teacher. So much less pressure and unnecessary time spent trying to reduce his answer to the fewest amount of words because he detests writing so much.

 

But then I got careless, and I asked about ESY. The principal felt it was far too early in the school year to consider it, and she mentioned the “regression” tool that they use to decide if a child needs ESY. I casually mentioned that my understanding was that it wasn’t the only criteria for ESY (I admit it, I was pretty assertive. A couple of summers ago Connor was kicked out of two summer camps, due to behavior. Last summer, having ESY half day and camp the other half, he did beautifully. If you comb through all the legal junk, you will find that if there is a serious disruption that causes hardship, that is also a qualifying factor. In short, I’d already done the homework, but I had to back pedal and stroke egos, like a girl in a massage parlor specializing in happy endings.) Since we were due to have the official IEP the following month, I acquiesced and told the principal that I was fine with revisiting it then, because I wasn’t sure if I was correct anyway, and wanted to read through the department of education policies to make sure I wasn’t speaking out of turn, (In other words, I let her know I was coming with a huge stack of paper, with all the legal parameters highlighted for her convenience.) and that I appreciated her willingness to table it until then.

 

At our official IEP meeting in October, the very first agenda item was the principal informing me that he did, indeed, qualify for ESY! I thanked her profusely, and encouraged her to have another cookie. (Yes, I brought cookies. I actually really like his teachers, very much. And I want them to know I appreciate their hard work. Also, it’s a strategy to give every impression that you are kind, thoughtful, and reasonable. Reasonable is the important adjective, because if you ever have to push things to mediation, you don’t ever want someone to offer an impression of you as being overly emotional or controlling. And you want them to know that you will scratch their back, if they scratch yours.)

 

So far, the school year is proceeding well. We have a nice routine going, and both the gen ed and special ed teachers are fabulous. His gen ed teacher even went the extra mile. Connor had been having an ongoing feud with another boy, that Connor would fixate on every day. The teacher pulled the other boy in and talked to both of them, asking them what things they like. She found some common ground, and got them to shake hands and call a truce. In the past, issues like this have been ignored, or just considered “normal kid squabbles.” But it was more than that to my kid, and she really got that. As a result of her taking the extra time to do that, we have avoided further issues.

 

These are the people that support our kids every day, and it’s important to try and have a good relationship with them. Teachers work hard, and the more we can support and encourage them, the more likely they will be to listen when we feel our child needs some extra help. It’s the administrators that are more complicated and require more sophistication to gain their support. (Let’s face it, they have a budget to follow, and they’re going to play hard ball to meet that bottom line. You’ve got to be prepared and have a solid case to get what your child needs. And if you can make them feel like it was their idea, all the better.)

 

Hope you find some of this helpful when you’re tackling challenges with your child. Make no mistake, this is HARD. But quitting is not an option. Failure is not an option. You need to read up on your state laws regarding special education, as well as knowing IDEA. And remember, even if you need to actually pull in an advocate or lawyer, a batch of chocolate chip cookies couldn’t hurt either.

 

 

So Anyway, School and Stuff

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Remember when I used to write funny things? I did, really. You can look here and here to see.

Between lots of different challenges at school, and all the other things I balance, there just hasn’t been much time left for writing posts. Sorry about that. I hope to be back to our regularly scheduled program soon. And since I don’t have time to go into all the tiresome details, I thought I would draw you a picture to summarize things.

20131028-210255.jpg

That’s the gist of it. Most of our kids just don’t fit inside the public school “box”. Try as we might, they are always going to be different and unique. No amount of cramming, folding, or accommodating is going to make them squeeze their beautiful complexity into that boring, ordinary, and thoroughly routine box.

There are some pretty amazing people out there that didn’t fit in that box either.

Now besides all the shenanigans going on at school, I’ve also committed to do something that will consume every shred of free time I have left (translation: time that I should be using to do laundry or clean the house). This year’s NaNoWriMo starts Friday!

If you don’t know about NaNoWriMo, it is an international project where people commit to writing a novel during the month of November. It’s completely free, and they have an awesome website set up so you can register and get ideas and support. Most local areas also have groups that get together at various locations to work with others. If you’ve ever thought about writing a book, you should check it out. There is nothing to lose by doing it, that’s the genius of it. You can look back in 30 days and say, “I actually wrote a novel!.” Or, you can look back in 30 days, or 30 years, and say “I always wanted to write a book.”

If I have time I will pop in and drop a post here, otherwise, I hope to be back in December with a little sumpin-sumpin.

Stay well, friends.

nanowrimo

If They Only Knew What I Was Thinking

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As parents to children with special needs, we’re graced with many, many opportunities to kindly and compassionately educate others about our children. We endeavor to dispel myths, preach inclusion, and promote equality and acceptance.  It’s not always easy to be so kind, especially when we read extremely ugly comments to posts online, or hear others speaking crassly about autism or other special needs.

Sometimes we just want to let the snark fly.

So I did. Here. Following are some of the things I only wish I could say sometimes. I’ve chosen to write responses to some of the most common questions we hear or read. Just to be clear, these are things I think in my head, not things I actually say. (I feel like I have to make that abundantly clear, so no one gets their panties in a bunch.)

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“Why should our kids have to go to school with all these ‘challenged’ kids?  Why shouldn’t kids with special needs go to their own school?”

It’s important that your children are prepared for the real world by being exposed to different kinds of people.  When they are adults, no one will be there to shelter them from all the “different” people they will come in contact with, and we don’t want it to be a shock to their system when that happens.

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“Why should our tax dollars be used to support kids with special needs?  They use up money that schools could be using for materials, teacher salaries, and extracurriculars.”

Everyone knows that teachers are in it for the love of teaching*, not the money.  It would almost be insulting to offer them MORE money, just for doing what they love.  Besides, most of those special needs kids get denied for services they really need, so we’re not spending THAT much extra on them.  I’ve also got enough cookie dough in my freezer from the PTA fundraiser to fund a sports team for an entire season.

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“What if our children pick up bad habits from the special needs kids, who have unusual or severe behavior problems?”

Many behaviors occur because of teasing, bullying, or not being included by their peers.  Your children should be safe as long as they continue to ignore the special needs children, as though they’re not really there.  If one of them does have a behavior in front of your children, they should move as far away as possible and stare at the special needs child, whispering to their friends about him or her, and basking in the warm glow of satisfaction, knowing they aren’t as weird as that kid.  Because being a friend to a child with specials needs is just unimaginable, right?

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“These kids take up more of the teacher’s time in the classroom, so the rest of the kids suffer because they’re being held back.”

It’s true that children with special needs often need more one-on-one time, keeping the typical kids from mastering the content in record time, forging through the grade-level work by mid-year, and resulting in them not being the next Doogie Howser.  That’s the reason we don’t ever see 14-year-old doctors in clinics and hospitals, and it’s a damn dirty shame.  On the plus side, it saves parents from having to pick up their doctor-child at the end of their midnight shift.

Sorry folks, urban myth. Your little precious isn't the child prodigy you think they are.

Sorry folks, urban myth. Your little precious isn’t the child prodigy you think they are.

I don’t know about you, but that felt good. Now that I’ve let the snark poison out of my system, I can go back to kindly and patiently educating these stupid fuckers misinformed parents. I try to equate educating the masses with the formation of the Grand Canyon. Time and pressure. If time and pressure can carve out something so massive and breathtaking, then there’s hope for autism awareness and education.

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*Teachers TOTALLY deserve more money, they work hard.

His Birthday, My Gift

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Connor had his 8th birthday last week. He didn’t really know it, but there was so much more to celebrate than just being a year older.

Second grade is almost complete. He is reading on grade level. Although he still struggles with math, he has worked really hard at it this year (thanks to some IEP goals I fought hard for). So hard, in fact, that he participated in something the school calls “Math Marvels.”

Math Marvels is something the school does each week, where students can come to the cafeteria and test their math skills by doing so many problems within two minutes. There are different levels, from addition of numbers 1-9, and so on. Connor showed a lot of interest in testing, especially since passing means you earn a medal. He passed the first level of Math Marvels on his second try, and came home with his medal around his neck.  There are no accommodations for Math Marvels, because it’s not part of the regular curriculum. That’s what I was told by the teacher. So this was accomplished without any extra support.

Math Marvels AND a soccer medal, woo hoo!

Math Marvels AND a soccer medal, woo hoo!

This spring Connor played on a recreational soccer team. There were 10 weeks of practices and games. He enthusiastically looked forward to it each week. He participated and never complained when it was his turn on the bench. He scored one goal this season, and somehow that one goal was more special to me than if he’d scored a hundred.

The Titans were a mighty force to reckon with.

The Titans were a mighty force to reckon with.

When the season ended, the coach had a special pizza party at Gattiland, the Texas version of Chuck E. Cheese. Each player got a medal. One mom and her son arrived a little late. Her son was arguing with her, whining, and she was exasperated. She warned him that they would leave. I could see she was at the end of her rope. I approached her and put my hand on her shoulder, and told her that Connor has Asperger’s and ADHD, and I’ve seen my share of meltdowns, and pulled him out of many places. I told her I knew how she felt, and it was okay.

Her eyes got big as she said, “I had NO idea.” She’d never suspected that he was any different. And although that shouldn’t be a source of comfort to me, it was. Yes, I feel some shame at that, but it’s true. To hear someone say that he just blended in, and they weren’t aware that he was any different, well that made me happy. I was happy for him, that he could have that experience without being branded as different, odd, or special. He was just Connor.

Yes, this birthday was special. So special that I dropped the ball on planning it, compared to past years. I didn’t call ahead and order a special cake, decorated with super heroes or movie characters. I didn’t go overboard with gifts. I didn’t even plan a party.

We got him the Skylanders game for the Xbox and a Spiderman web shooter. We, our little family, took him back to Gattiland for pizza and games. We came home and had the cake I picked up at the last minute at Wal-Mart, where I hastily had them add his name (and a shoddy job they did).

And he was happy with all of it. Not one complaint.

In fact, he insisted on cutting the cake, and said he’d cut it into equal parts of four, since there was four of us (don’t worry, I talked him into smaller pieces).

Only 8,000 calories per slice.

Only 8,000 calories per slice.

And at school, they have cupcakes and make a birthday book. Each child writes something on a page to wish him a happy birthday. Most of the pages were pretty ordinary, like this:

IMG_1587

But there were a couple that didn’t disappoint in the humor department. Like this, from a girl that knows what she likes:

It's all about the Crocs.

It’s all about the Crocs.

And this kid, who’s all about the cake (a boy after my own heart):

Well are there cupcakes? Oh, and happy birthday. But are there cupcakes?

Well are there cupcakes? Oh, and happy birthday. But are there cupcakes?

This past year was truly a gift. It may have been his birthday, but it was really a gift for me. Thank you, Connor, for the amazing gift of being your mother. You humble me. You bring me to my knees with your spirit and humor. You remind me to never stop believing in your ability. You’ve made me stronger and fiercer, while shattering my heart into a million pieces. It’s the most fulfilling, rewarding, and frightening experience I’ve ever had.

I couldn’t have asked for a better gift, even though it was his birthday.

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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.

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