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Sunday, April 7, 2013

AUTISM ETIQUETTE FOR TEACHERS

It's midnight. The last seconds of Spring Break have just slipped away. As usual, I completed my school newsletter the evening before distribution, and my eyes are glazed over. But before I slip into a coma, I thought I'd share a piece I included in my newsletter (which is distributed to all parents, teachers/assistants, the boss man, and the BIG boss man). Perhaps it's a little too cynical for a school newsletter, but...that's how I roll...especially at midnight.
  • Do not refer to students as “autistic”. Autism is not an adjective. Always put a person before his/her disability. I do not have an autistic son; I have an awesome son with autism.
  • Definitely do not refer to Mrs. Condrey’s class as “The Autistic Classroom”. We deserve the same respect as other classrooms. Would you like to be referred to as the “ADHD room?” or “Miss OCD”?
  • Avoid assumptions. Don't assume our students would not enjoy the same field trips as your classroom. Don't assume because a student is non-verbal, he/she has nothing to say. Sometimes life with autism is trial-and-error, but the most wonderful things are discovered when you take the "can't" out of the equation!
  • As you may already know, my favorite autism quote is “If you’ve met one person with autism…you’ve met ONE person with autism.” Have you ever heard someone say (or said yourself) “He can’t be autistic. I had a kid with autism last year and he acts nothing like him.” Think of the stereotypes we constantly encounter as Southerners…or women…or minorities…annoying, right? Imagine someone judging you based on ONE other person. “Your name is Delores? I had a Delores in my class last year – a real whipper-snapper. Sorry, I’m gonna have to ask you to leave. NOW.”

Friday, March 15, 2013

THE BRICK (...the brick...)

So, I thought I would just take a quick moment to share Tanner's new addition to the OCD family. We like to call it "The Brick". What is the brick, you might ask? If you've never seen the ABC hit TV show "The Middle", perhaps this montage of the awesome character Brick Heck will put in perspective for you: 
(Note: It won't take the full 4 minutes to get the picture)


 

OCD can not only involve repetitive movements or behaviors, but repetitive speech as well. For Tanner, what once began as a whisper to "practice" what he was going to say, has now also become a "Brick" whisper, following key parts of a conversation....to see if it sounded right? because he likes the feel of the words rolling off his tongue? because it sounds familiar (security)? Not yet sure. 

Quite a mystery indeed....(quite a myssssstery)


KINDRED SPIRITS



Yesterday, my friend’s 23-year-old son came to visit. Tanner is pretty social for a child on the autism spectrum, but he became absolutely ecstatic when he met Adam for the first time. Tanner talked for a solid 20 minutes without taking a breath, wanting to share everything about his life and learn all he could about Adam’s. 

My friend and I were amazed at the “kindred spirits” sitting side-by-side drawing and discussing comic books and video games. In fact, my friend kept commenting how, in all six (almost seven) years of Tanner’s life, she had never known him to be so talkative or so animated with anyone.

I was half-heartedly listening to the chatter in the background, but my ears perked up when I heard this:

Tanner: “I’m an autism kid.”

Adam: “Oh yeah? Is that what your mom told you?”

Tanner: “Yeah. Are you an autism grown up?”

Adam: “Yeah, a little bit!”

Tanner: “Well, I have my own blog…”

Adam is an adult with Asperger’s. I had mentioned this to Tanner a long time ago. Apparently, he had held onto this information and sprang to life when he finally met him. Tanner ran over at one point and said, “Mommy, I really like this guy! He’s so cool!”

…Another argument for knowledge being a powerful tool for a child with Asperger’s. Tanner was able to connect to someone with the same “label” as him – someone super-cool, handsome, and totally normal. He was excited, comfortable, and in great company. 

Ya know, Kindred Spirits.

"Kindred Spirits" by Brian Andreas

Saturday, February 23, 2013

THE TRUTH WILL SET YOU FREE...THE DAY I TOLD MY SON HE HAS ASPERGERS



I have always had open discussions with my children about the differences in our world. We’ve always discussed things we struggle with, as well as things that make us awesome. I make mistakes publicly and process anger verbally so my children understand these things are OKAY. 

As a veteran EC teacher, my children have had the opportunity to interact with my students of varying abilities - from nonverbal & wheelchair-assisted to having mild learning disabilities. However, most of my classes have been self-contained settings for students with autism. The advantage for my son Tanner is that he is aware of autism and recognizes my students as having autism. The DISadvantage for Tanner is that he is aware of autism and recognizes my students as having autism

You see, Tanner has associated autism with children that are non-verbal, flap wildly, make strange noises, and/or do inappropriate things (despite my best efforts to point out otherwise). In fact, at a recent “Autism Fundraiser”, he asked why we were raising money for “kids who can’t talk”. Again, I explained the giant spectrum of autism and all the cool things about it.

Obviously, Tanner is not yet aware of his diagnosis. It worries me that he doesn't have a broader understanding of what autism is, because he will one day learn he is on the spectrum. Having said that, we have not found the right time to discuss it with him, nor have we felt it necessary at this age. He knows he is different, but aren’t we all?
3993 Cute Photos
Unfortunately, there comes a time in every EC parent’s life when they are faced with the inevitable, dreaded “talk”. I now find myself editing a former draft for my blog from how I would tell my son about his autism to how I DID tell him. Luckily, our story of how we told Tanner was not much of a “talk” at all, but the answer to a 6-yr-old’s burning question. 

It went down TODAY like this:

Tanner has recently begun to discuss, in great detail, the differences he has and the difficulties he’s experienced. He can describe in glaring clarity his movements, obsessions, and uncontrollable urges which make him him. Tanner’s main issues at school involve high levels of stimulation (he has always violently stomped his feet in rapid patterns on the floor, rocked forward/backward, and stuck his hands between his legs to avoid flapping his hands too much). Luckily, he has an understanding teacher who allows him to be himself in these scenarios. 

Tanner also HAS to say whatever pops into his mind, regardless of the appropriateness of the setting or topic. In fact, when asked to be quiet, he will continue to see his conversation through to completion, despite the consequences.  This is a common autistic social faux pas, but one that cannot be ignored, as it has begun to impede his learning and that of his classmates. And, while Tanner’s teacher has the patience of Job, there has to be some consequence and understanding of the rules, especially when it involves interrupting teachers or blurting out during tests. 

Tanner has been feeling down on himself lately for “getting in trouble for flopping and being wiggly”. He has recently made comments like, “I wish I would die” or “I just want to be a normal kid”...

www.markramseymedia.com
We will fast-forward through the requested classroom observations and OT screeners and move on to the part where I felt an obvious tug in my heart to not only tell Tanner he wasn’t weird or bad, but to offer an explanation. 

The past few years, I’ve sought “professional advice” to prepare for this moment. The burning question for all EC parents is “When?” "When do I tell my child he/she is different?" I know, I know, we are all different...but there will be a time when a child with special needs realizes it's something more... They are different different.

I asked several friends, teachers, and therapists their opinion, and while hesitant to answer, most felt he may be too young to truly understand.

At a conference, I personally asked Debbie Meringolo and Nancy Tarshis, of “Social Thinking” notoriety, the same question. They went into a detailed discussion about how Tanner never needs to know a “label”; he only needs to understand and accept that all people are different (grrr, there's that word again).

A school psychologist, while explaining it is a “parental judgment call”, suspected that a “talk” at this age might increase his chances of depression...

Ironically, whenever I turned to the autism community (the real experts, after all), the consensus seemed to be that discussion should occur as soon as your child is ready...

I recently read an article in “The Spectrum” by Jennifer Cook O’Toole, an adult with Asperger’s (who also has an Aspie husband and three Aspie kids) who urges parents to tell their children as soon as possible, because “your kiddo already knows she is different than many other people. Give the difference a name that is free of shame, and you’ve given a young person answers, relief, tools, and hope.”  This made me feel sooo much better about the prospect of having to reveal to Tanner at an early age that he has a diagnosis.  


Yesterday afternoon, as we exited my classroom after school and started down the hall, Tanner made a profound comment out of nowhere. “Mommy, when I grow up, I want to find out why I am so hyper and wiggly. I want to become a scientist and find a way to check everybody to make sure they don’t have what I have.” WOW. Perhaps the time is drawing near, I thought to myself. 

Today, we were obsessing over a “Plants vs. Zombies” plush toy he had been saving for. After checking our chore charts and adding our money, Tanner insisted I immediately order the toy. After an additional 30 minutes of making sure we had the exact plush he was saving for, I urged him to “take a break” so I could place the order (I was clearly the one who needed a break!). 

He voluntarily explained that “I know other kids wouldn’t care about watching you pay for it. But, I think the whole thing is interesting…Ya know how I’m so hyper and wiggly? I also have this thing where I have to see someone do something they promised. Like, when you promised to order that zombie, I have to see you do the whole thing. My brain has to watch you do it even though you promised you would (long pause)…I wish I knew why I was so different.

Uh-oh. There it was. 

I always envisioned an evening sit-down involving my husband, out of earshot from my youngest son - sort of like the Parenthood episode where the Bravermans sit Max down to a teary-eyed explanation of his recent Aspergers diagnosis. 
 
  (While I could not find the actual clip of the sit-down with Max {without paying for it}, 
I did find the Bravermans' follow-up with the child psychologist:)
...Scary stuff.
   
Luckily, it did not go down like that. No plan. No script. My son was looking for answers. And so it began: 


“Tanner, do you remember yesterday when you said you wish you could find out why you were hyper and wiggly? Why did you say that?” 
 
“Because I want to know what I have so I can stop it and just be a normal kid.”

“You are a normal kid, Tanner. You are a smart, normal kid. You just do some things differently...If Mommy knew why you do some things different, would you want to know?...(head shakes yes)...I don’t want you to be sad. It’s just a name. Just like brother has SPD or daddy has OCD or mommy has ADD?" 
(Be it right or wrong, I have tried to “label” things to prepare Tanner for any "labels" he might have, and to make him realize that a label is not a “sentence”…God, I hope that wasn’t a mistake.) 

 “I get it, mommy. It’s just a name. It doesn’t mean I’m bad or anything.” 

“Right.  It’s just a way to help other people understand why we do certain things, and for doctors and OTs to know how to help us when we need it.”

 “Do you know what I have Mommy?” (wide-eyed and excited)

“Yes…Do you remember this book about the kid Danny that has Asperger’s?” 
(picking up the book “What it is to be Me!” off the shelf)

“Yeeeah…so I am an Asperger kid?”

“Mmm Hmm. Here is a website we can visit to learn more about Danny.” 
(we visited www.aspergerkid.com)


I want a website so I can tell people all about me and they can understand!!!”


“Actually, Tanner, you kinda do. Do you want to see it?” (head shakes yes)
(I take him to my “Octagons and Chicken Fries” blog, a place I usually only access during his sleeping hours)


“Why is that picture of me on here?” 


“Because I love you and I want people to see you’re the reason I like to write about this stuff. And the reason there is an autism ribbon beside your picture, is because Aspergers is a kind of autism.”


“So, if I’m Asperger, I’m autism?”


“Yes. There are many kinds of autism, and you are a very, very smart kind.”


“Let’s write something on your blog right now!”


“Do you want to talk about how you feel being an Asperger kid?”


“Nah…let’s just start with the basics.”
 ________________________________________________________________________________

Here is what Tanner wrote by himself, and the pictures he chose to go along with them:

Tanner’s site. Helped with mommy.

Tanner is a really cool kid. Here are some things about him:
  • he Loves  video games
www.fatpebble.com

  • he Hates chapstick
www.burtsbees.com
  •   he  Loves the show Annoying Orange
photo from Game Spray
  •     he  Likes to read
www.amazon.com
  • he likes to use his imagination
www.kidzartblog.com
  • he loves stuffed animals
www.amazon.com
  • he loves to draw




Monday, February 11, 2013

WHAT THE PRINCESS BRIDE TAUGHT ME ABOUT AUTISM PARENTING

WOW - It's been a while since my last blog entry. (Turns out my 4-yr-old's sensory issues are more time-consuming than my 6-yr-old's autism...GO FIGURE!)

Anyhooo...I just happened upon this AWESOME blog today, and thought I'd share. It's called Snagglebox, "a place for honest, practical and encouraging help from someone who knows there's a light at the end of the tunnel but still remembers how fricken' hard it can be to find it". LOVE IT!!! They have a webpage (www.snagglebox.com) and appear on Facebook (under "Snagglebox - Autism Parenting Support"). 

Their most recent post is entitled, "17 Things The Princess Bride Taught Me About Autism Parenting". Being the Princess Bride cult follower I am, I just had to check it out.



As blogger etiquette would have it, you must visit this link to read the whole list, but I took it upon myself to highlight a few of my favorite quotes and add some anecdotes of my own: 
 
"You rush a miracle man, you get rotten miracles
If there's one thing I've learned as a mother and teacher of kids with special needs, it's patience! I've never considered myself a patient person. Just ask my family or coworkers - I'm known for getting overly-excited about something (DIY projects, new lesson plan ideas, new exercise program), only to be "over it" two weeks later. However, when it comes to my kiddos (biological or otherwise), I have to be patient. There is no choice in the matter if our special little guys are going to succeed.

“Patience is waiting. Not passively waiting. That is laziness. 
But to keep going when the going is hard and slow - that is patience.”  
- author unknown (from thinkexist.com)
 
 
"Don’t believe the hype"
OK, this one can get me in a lot of trouble, but here it goes... Whether you're on the gluten-free train, the heavy-metal detox wagon, or drinking the Jenny McCarthy Kool-Aid, stay informed. Don't rely on one organization or public figure to persuade you into what is right for your child. You know what they say, "if you've met one child with autism...you've met one child with autism"! Each case is unique. Parents can become desperate when looking for a way to communicate with a nonverbal child or stop an aggressive child from hurting himself. Unfortunately, there are people who will prey upon that desperation. Be Smart.

"There’s not a lot of money in revenge"
There will always be that teacher that doesn't agree with the diagnosis, that family member that thinks your kid is just weird, or that stranger that thinks your kid just needs a "good old-fashioned butt whoopin'". Forget the haters.
 
And finally...
"Optimism can get you through the fire swamp." 
Sometimes all you can do is laugh. If your glass is not half-full, you're gonna be one thirsty bitch.

Thursday, January 31, 2013

"CONDREY-ISH"

I love to read. Perhaps this is why my boys read at such an early age, why there are not enough bookshelves in my house to contain our library, and why Tanner's favorite place is Barnes & Noble. I don't often read fiction, but read to learn - which may explain how I came to be a teacher or why I can't seem to stop accruing student loans!

One of my favorite self-improvement books is "Wild Things: The Art of Nurturing Boys", by Stephen James & David Thomas. It is, according to its own cover, "a practical guide to understanding the way, the mind, and the heart of a boy". It covers a wide range of topics, from the stages of a boy's life to the way a boy's brain functions. It describes how a father's upbringing impacts his relationship with his sons and their mother, and it is eerily accurate.

In one of the chapters, James and Thomas discuss the importance of the family name. They explain the pride a father has in his surname, and how he should present it to his children as such. I took this advice to heart, often telling my boys how "Condreys never quit" or "Condreys work hard to be smart". 

This evening, after having a heart-to-heart with Tanner, he looked at me and said, "Maybe your last name should be 'Condrey---ISH'." I asked why, fearing the usual candid answer. He replied, "Well, your brain doesn't have big ideas like mine. I'm a Condrey, and you're just Condrey-ish." Touche' my little wild thing, touche'.
 

Sunday, January 27, 2013

"IMPAIRED PERCEPTIONS" PHOTO PROJECT


Yesterday, CNN.com highlighted a phenomenal photographer named Brian Steele, who has not only created a powerful collection of photographs combating "ableism", but has overcome his own physical disabilities and discrimination.

Ableism, according to Steele, is "a type of discrimination against people with disabilities". His project includes black and white photos of people of varying abilities; it's purpose is to show the beauty they portray inside and out.

Click here to go to Brain Steel's personal photography website
   "We filter everything that we see through the lens of our perceptions, so it is not until we are able to step outside of our perceptions that we are able to determine what is real and what is not...
The portraits are traditional, empowering and show each person's humanity." 
- Brian Steele (taken from CNN interview)  

**************
Tanner just came in the room as I typed this blog and looked at the photos with me. His comments included, "She looks so young" and "He looks strong." It is my sincere wish that my children will maintain that innocence to appreciate the true beauty in all people, especially ones that are "atypical". I also hope that others will return the same courtesy to them.

Monday, January 21, 2013

"HOLY CRAP"-ETERIA (LUNCHTIME OVERLOAD)

Children with autism usually have problems processing sensory stimuli. As a result, they are often hyper-sensitive to certain lights, sounds, tastes/textures, smells, and/or touch. They can become overstimulated and overwhelmed, which can make for a bad day. 

That being said, what more craptacular place to have a meltdown at school,  then in the cafeteria? It's loud and noisy, uncomfortably packed, and a smorgasbord of smells. 

In my many years of elementary school dining, I have had students who: 
* tried to dive into the "shiny place" where lunch trays and silverware go
* tackled the lunch ladies for a plate of hot dogs (the only thing this child ate)
* make loud noises to drown out the unfamiliar noise around them
* lie their heads down on the table and/or shut their eyes to shut out sensory input
* hide under the table with their fingers in their ears
* made a b-line for the door in a screaming panic

My own son flips and flops relentlessly in the cafeteria, gags on "stinky soup" days, and cannot be the "table wiper" due to it's direct correlation to puking in the trash can...

My new found Aspie-mom friend, Christina Allred, just posted a poem on her blog that sums up the whole experience quite well...

Here is an excerpt from "'Holy Crap' -eteria, An Aspie Poem":
 
"...THIS PLACE IS TOO MUCH!
ITS SMELLS AND NOISE AND SUCH!
I JUST CAN'T TAKE ANYMORE!"

And then like a flash,
With a bang and a crash,
I am racing out the cafeteria door.

After half an hour in such a stimulating place
Is it really such a surprise,
That when walking back to class, away from that hell
I am angry and have tears in my eyes?!!..."


As Christina mentioned, please try to be understanding of students in the cafeteria. 
And if you are eating out and a child has a public meltdown, don't assume he/she is having a tantrum for a cookie....it may be an autistic friend who is a little overwhelmed.

Monday, January 14, 2013

NOT AUTISTIC ENOUGH

One of the most common traits of people with autism is social awkwardness. My son is not particularly shy when meeting a stranger, but the conversation he tends to engage in usually has all or most of the following characteristics:

* pertains only to topics HE is passionate about (#1 topic these days = "Plants vs. Zombies" video game)

* contains detailed and lengthy descriptions, despite social cues that others are disinterested  (i.e. the "Plants vs. Zombies" video game and all of the characters and all of the levels and all of the achievements you can earn and all of the secrets of the tree of wisdom and all of the updates and all of the plush toys he's collected and all of the ones he's saving up for and.....well, you get the picture)

* involves some type of physical "stimming" (self-stimulation - in Tanner's case, a flipping of the arms/hands between the legs, body bending/rocking forward, feet/legs vibrating on the floor or chair...and if making up a story, pacing or circling the room while stimming)
 
* does not leave room for reciprocation (in other words, no one gets a word in edgewise!)

* lacks voice modulation (tends to be loud, and gets louder with excitement)
 
However, because Tanner's vocabulary is mature, his speech articulate, and his imagination vivid, some people don't view him as having a "disability". He is super smart and freakishly artistic for a six-year old, but because he doesn't yet require an IEP, attend special classes, or have major meltdowns during school hours, he must be pretty "normal".

Because Tanner falls on a much higher-functioning end of the spectrum than my students or friends' kids with autism, my own husband used to feel "guilty" saying that his son was autistic. He felt like it was a "slap in the face of those really struggling with autism," he'd say.

Tanner himself views autism as "kids who can't talk well" or "make noises" despite my best efforts to explain the large gamut of children on the spectrum (he is obviously not yet aware of his "label" and spends a great deal of time in my classroom, where I teach children with moderate-to-severe autism)...

Research shows that almost half of children with autism are bullied, most likely the higher-functioning students.

From what I've read on the subject, even children are selective on who is "disabled enough" or "autistic enough". Studies show that if a student has an "obvious" disability, children find it taboo to pick on them. However, autistic students who are verbal and find themselves in regular education classes with little or no support are three times as likely as their "typical" peers to be bullied. They are simply seen as "weird" or "nerdy" and become easy targets as social outcasts...

I am proud of the strides Tanner has made and the insight he already has into his own feelings. I do worry that he often speaks as a 6-year-old with depression. I worry about bullies and intolerant teachers. I worry that if he is "too smart" he won't receive the support he needs. I worry that some family members will never fully recognize the fact that Tanner is special and not just some quirky kid who needs more discipline.

Autism comes in all shapes and sizes. Every family has their struggles. Ours may come in the form of social awkwardness, narrowed interests, and meltdowns due to severe OCD. Others come in the form of still potty training their now 12-year-old, meltdowns that include self-injury or physical abuse, or lying awake at night because their child wanders out into the night. 

I am thankful every single day to have an awesome son who is verbal, affectionate, and healthy. But I will never apologize because he is not "autistic enough".