On Yelling

I follow a few autism-related facebook pages, and on several, the administrators post anonymous questions from followers so that others may offer advice.  There was one such posting this morning from a clearly frustrated mother who found herself yelling at her son, and feeling unable to handle his behavior.

Sometimes I yell at myself.

Sometimes I yell at myself – ★ spunkinator

I’ve been there, my family has been there, the ex has been there, and The Man has been there.  We have all yelled at The Boy for one reason or another.  Luckily, there is that voice inside of us that immediately tells us that it was unnecessary and the incorrect thing to do, and we tend to go back, make amends and start over.  I think the person who posted the question has that sense of remorse, otherwise she wouldn’t have posted.  And I think every person touched by autism can understand her feeling of helplessness.

What has helped me (and this is not to say that I don’t yell anymore, but it’s pretty rare), has been to really try to see the world as The Boy sees it, understand the frustrations he is dealing with, and remember that behavior is communication for our ASD kids.  If he starts to fuss about something, or refusing to do something, I immediately try to put myself in his place and review what is really bothering him – many times it’s something sensory, some change to the routine, no physical activity, or the fact that he hasn’t had any time to revel in his obsessions lately.  It’s not necessarily whatever he is verbalizing.

And reading books and blogs written by people on the spectrum can provide great insight and spectacular “A-Ha!” moments.  It’s amazing how differently you can see your child sometimes after reading something that just clicks.

I think a lot of people get hung up on never quite understanding, and they develop their own sense of what these kids should be.  “He should know better.”  But I don’t dwell on the “shoulds” –  I just keep analyzing my own kid, and his communication, either verbal or behavior, to try to understand him as he is.

An Extended Weekend, a Great Day

The Boy doesn’t have school today, so we are hoping to go see Cloudy with a Chance of Meatballs 2 later.  And that also means I don’t have much of a post today.  But I want to take a moment to express how lucky I am, because Saturday was my birthday, and as usual, The Man and The Boy made it special:

bday13

They always get me a cake, they always get me a card, and they always light the candles and sing to me.  And thanks to Grammy for taking The Boy out to get a gift for me.  This is what family is about. 🙂

Be back tomorrow!

Cheers!

~ Annie

 

3 Things I’ve Learned from The Boy’s Worst Teacher

If you are a regular reader, you know we’ve been struggling with The Boy’s new school since day one of this school year.  They seem to have precious little experience with autism, or even with IEPs, modifications, and accommodations, which cannot be remotely possible, but here we are.  I have felt all along that their hearts are basically in the right place, they are just ignorant…  with one exception.  The Boy’s social studies teacher has repeatedly demonstrated contempt, if not for The Boy himself, then for the extra effort he requires.  She is the type of teacher who follows the textbook as if it were a bible, and pushes those 6th graders as if social studies is their only class, and their one true avocation in life.  Her assessments have little to do with the content learned, and seem to have been added as an afterthought, possibly when an administrator asked her to expand her resources to other sources than the textbook.

I received a note home from her in the planner, mid-week, that explained that The Boy had been given a modified test, and even with extra time had completed very little of it.  OK, Problem Number One: I looked back in his planner, what is supposed to be our primary method of communication between school and home, and there was no mention of a test.  I went on this teacher’s website, and there was no mention of a test, I looked back in my emails, and there was NO MENTION OF A TEST.  So I emailed the teacher immediately, pointing out that I had no previous knowledge of a test to be given this week, and was there a review sheet?  She emailed back the next day, saying she had looked in The Boy’s planner and it had been written at least four times in the last week that there was a test Wednesday…  This was an outright lie!  I had made a copy of the current page of the planner, because I like to document these notes of hers (this was not the first) that seem to imply she’s doing everything she can and The Boy is being somehow disobedient by not complying.  I emailed back to say that her statement was incorrect, that I had made copies of his planner pages, and there was nothing written in the social studies slot in the planner during the last week.  She responded, apologized and blamed it on the 11 year-old girl who helps The Boy write things in his planner, saying she had either written it in the wrong spot or had not copied exactly what was on the board.

Can you feel the anger rising in my throat by now?

We’ll get back to the outright lie in a minute.

Problem Number Two: She explained that there had been no review sheet, that the students were supposed to study from their “chapter work,” and that due to personal issues and being out for a few days the previous week, she hadn’t updated her website.  Well, The Boy didn’t have any “Chapter 3 work” to study — it had all been turned in.  I had requested review sheets from her starting with the first test (this was their third already), so that I could help him prepare and focus for the test, and again she had disregarded The Boy’s needs.

Problem Number Three: “Extended Time” as an accommodation does not mean an extra ten minutes within the same class period, and I explained this to her.  I also explained that he is entitled to take his test in another location, have his test read to him, and all of the other testing accommodations that are in his IEP.  I asked her if he could bring it home to take it and she didn’t respond.  She just keeps giving it to him every class period and expecting him to complete it.

In my opinion, this has gone beyond a teacher “trying” to provide my son with modifications and accommodations.  This is now willful ignorance.  She has a history of not communicating with me about upcoming tests.  With the first, we had one day’s notice, and with the second and third there was no notice at all.  And for all three tests, I have seen one review sheet.  She has a history of not providing modifications to his assignments, and when I requested more time for him to study before the first test, she refused.  And now, not only did she lie to me about there being four notes about this week’s test in The Boy’s planner, she had The Boy and his helper go back and write in the notes after I told her there was nothing in the planner.  She got my email, waited until the next day in class, had them write things in the previous week in his planner, and then claimed they had been written there all along.

I have requested a meeting with the principal about this, even though I am hopeful that we won’t have to deal with this too much longer.

What have I learned?

  • Document everything.  I had a feeling I should copy those planner pages the night I wrote my email.  Unfortunately, I only copied one.  But at least I have that, and I have every email she has ever written which shows this pattern of a lack of communication and a lack of willingness to accommodate my son’s needs.
  • Don’t assume every teacher has your child’s best interest at heart.  It pains me to say this, and I don’t think this is true for 99% of the teachers out there, but I’ve learned this the hard way.
  • Don’t avoid confrontation about something like this.  I could take the easy way out and just bide my time until we can get out of the school, but I know there are other kids with autism in this teacher’s class, and I can only imagine how they and every other kid with an IEP who has ever been in her class have been treated.  It’s not right, and she needs to be called on it.

Routines, Item Attachment, and Flare-ups

We almost didn’t make it to school this morning.

new rubber glassesThe Boy had forgotten his (fake) glasses at Grammy’s house last evening, and wanting to head off a last minute meltdown, I told him as soon as he woke up.  I told him we could get them later that day, and that would be alright wouldn’t it?…  I breathed a sigh of relief when he said OK, but it was premature.

Once he was dressed, and it was time to go, he announced that he wasn’t going to school because he couldn’t go without his glasses.

I cajoled, made deals (and a few threats of consequences), and was finally able to get him out the door, a half-hour late.  He wore a pair of reading glasses instead, and I went to Grammy’s, picked up his (fake) glasses, and took them to school for him.

It’s still frustrating, and there are always those moments of indecision – Do I let him stay home?  Do I let him come with me to Grammy’s to pick them up?  Or do I stick to my guns?  What is the goal here?  Today, I think I made the right choice.  I don’t always, but no one is perfect.

I’m also starting to realize that for whatever reason, the glasses offer comfort to him, and that when he has a “flare-up” like this, it is a form of self-advocacy.  He is telling me that he is not as comfortable going to school without them.  And one of the best things I ever learned about autism is this: Behavior is communication.

 

Book Club Discussion: The Reason I Jump, Questions 1-10

reasonHas anyone picked this book up yet?

It is a series of questions and answers that author, Naoki Higashida, who was 13 years old at the time of writing the book, addresses about what it’s like to have autism.  Naoki was (is?) mostly nonverbal, so his mother developed an alphabet chart, and he composes his thoughts by pointing to letters that spell words.  The entire book was written this way.  Question One in the book is “How are you writing these sentences?”, where he describes his process.

The thoughts that struck me were that using this rather low-tech process allowed him to “anchor” his words, words that might escape him if he tried to speak them.  Also, he reflects on the necessity of self-expression being the essence of truly being human.  What a compelling thought.

Question Three is “Why do you ask the same questions over and over?”  One of The Boy’s oldest friends does this almost incessantly, and The Boy himself likes to do this from time to time, so I was curious about this.  Naoki describes his thoughts as not being linear like those of a neuro-typical person, but more like balls in a ball pit, so that asking the same question over and over helps him arrive back to the memory of the answer the last time he heard it.  The next part of his answer resonated with me — Naoki said that it also allows him to “play with words”.  This is one of The Boy’s favorite things – he loves puns and jokes that have to do with words even homophones and homonyms.  Naoki said that asking repeated questions that he does know the answer to can be like “playing catch”, having fun “playing with sound and rhythm.”

Question Four was similar: “Why do you echo questions back at the asker?” and Naoki responded that doing so was a way of “sifting through memories to pick up clues about what the questioner is asking”, so that he can select the correct “memory picture” that answers the question.  In other words, it’s a processing technique, and it echoes the idea of people with autism thinking in pictures.

Responding to Question Seven, “Why do you speak in that peculiar way?”, Naoki describes it as a “gap” between what he’s thinking and saying because he can only access certain words at that time.  He goes on to say that he may sound strange when he’s reading aloud because he cannot imagine the story while reading it. This, THIS is why I still read to my son at age 11, and why comprehension is difficult but fluency is a breeze!!

The next few questions deal with conversation, and why it so difficult for people with autism to converse.  In Naoki’s case, he describes it as a “flood of words,” and words “escaping” when it is his turn to speak.  He also asks us not to “assume that every word we say is what we intended,” because sometimes the words that can be accessed are not the correct ones, but they come out anyway.  He explains a great lack of control, and anxiety about how he is perceived.  He ends this section by asking, “Can you imagine how your life would be if you couldn’t talk?” and what I think he means is that not having the control of your own brain and body to make yourself understood is extremely isolating and frustrating.

What are your thoughts on this section of the book?  Were there any revelations for you?  Please share below.  I can’t wait to hear what you think!

Labels: Ain’t Nothing Wrong With Being Special

I saw a post on Facebook the other day with a picture of a young boy, and the words, “I have a disability. I need love. I need to play. I need friends. I need an education. My needs aren’t ‘SPECIAL.'”  It originally came from the Wyoming Governor’s Council on Developmental Disabilities, and on their main page, the group describes their “I’m Not Special” campaign, relating use of the word, “Special” to the use of the r-word, citing that many in the DD/ID community are offended by the term “special”.  The page goes on to say, “The label of ‘special’ in reference to a person with a disability does not convey equality. Expectations for success should not be underestimated to accommodate the ‘special’ label that is associated with people with disabilities.”

A picture of a rubber duck wearing a nametag, ...

Feel free to chime in below, but here are my thoughts.  The “I’m not special” campaign??  Are you kidding me?  Yes, THAT’S what I want to tell my son.  “YOU are NOT special, suck it up.  You are just like everyone else, and I expect you to do the same as everyone else with no support.  Stop using your autism as an excuse.”  That’s what the name of that campaign says to me.  Here’s what’s true: one of the tenets of special education, and educational law in this country is that you need to throw out the word “equal” and replace it with the word “equitable”.  Because the reality is that some people need more help, than others, and some kids cost the school district more than others – they need to have equal access to the curriculum, so the school has to take an equitable approach to ensure that.

And for the record, I don’t like the word “disability”, but I haven’t formed a task-force and anti-disability campaign.  My son has plenty of abilities, and has deficits in certain other areas, but he is not dis-abled.

The truth of this is that our kids with special needs do have special needs.  They are not typical children who can bathe/dress/feed themselves, or pay attention in class themselves, or do homework by themselves.  My child needs supports to be able to show us his abilities in certain areas.  He is able, but needs some help.  He is special, much like any child is.  And he is equal in worth to anyone else.  He can be all of those things – they are not mutually exclusive.

I also saw this pretty neat news story on Facebook.  That little girl’s flute sounds the same as all the other flutes, but it works differently, thanks to the special design of Mr. Woody.  Her flute is not less, but it is special.

Festival Season

This weekend was the local festival – HUGE deal in these parts.  It’s not even in our town , but everyone in the county, probably in several counties comes to this thing (in the town next door).  Locals stay away until the waning hours on Sunday.  I worked for our friend’s ferry service all day on Saturday, and the better part of the day on Sunday. The boys came to visit while I worked, and The Man took The Boy on some rides, and provided taxi and food delivery services to me both days – he was amazing.

View from my booth

View from my booth

 

Me at my booth

Me at my booth

 

Just something about a fair at night...

Just something about a fair at night…

 

It was fun, nice to make some money, and great to be outdoors and helping people all day long.  Everything was too expensive, but the food was good, and it’s something to experience, anyway.  Two more festivals next weekend… It’s that time of year, down here 😉

 

 

Book Club: The Reason I Jump

I watched a Daily Show clip this week, and almost immediately ordered the book being discussed.  In fact, I paused the clip about 15 seconds in to do so.  I’ve mentioned before that I’m not a big reader about autism.  I live it, so I don’t necessarily need to read about someone else’s trials and tribulations.  That may seem glib, but there’s a limit, you know?

reasonAnyway, something in this interview, and perhaps it was that I respect Jon Stewart so much for what he has done for raising funds for autism, or the fact that the author being interviewed (David Mitchell, who didn’t write the book, but made it happen) also has a son with autism, but whatever it was, this book seemed compelling.

I think all of us with children on the spectrum would give our own various body parts just to know what our children are thinking, what is going on in that brain of theirs…

And this book was written by a 13 year old Japanese boy with autism, Naoki Higashida, about autism, and about what it is like to be on the spectrum.

I’ve ordered my copy, and will post some book-clubby type posts on my facebook page coming up if you are interested.  They’ll start Wednesday, October 7th – does that give you enough time to get a copy and start reading?  I hope so.  I can’t wait to start reading!

Double Dating

The Man is a creature of routine.  Before The Boy and I came around, it was even to the point that he ate certain meals on certain nights of the week.  I think he misses this a little bit, but we’re both good for each other, pulling each other out of our comfort zones, just a bit.

The Man also has lots and lots of friends and acquaintances, and some of that comes from staying in the town in which you grew up.  But even more of it has to do with the fact that he’s an affable guy who has owned a business or two, and people just like him.  But he has few close friends, which is more like me.  I’ve always been able to count them on less than one hand, and he is much the same.

We're bringing the wine ;)

We’re bringing the wine 😉

Tonight, we are heading over to a friend’s house (his, of course) for dinner, and I’m excited.  People!  Real people!  And I get to hang out with them and have intelligent adult conversation!  And crab cakes!  I know these friends of his, and I like them – they are good people.  And so we are doing this thing that I’m sure lots of other people do lots of.  We just don’t.  Or should I say, haven’t?

We went out a couple of times with PITA and her hubby when The Man was in town and I still lived up north, and we had fun.  But it was difficult to schedule, with PITA’s hubby being a chef (working nights and weekends), and The Man only visiting every 12 weeks or so.

So this is new, this having dinner with friends thing.  And I’m very much looking forward to it. 🙂

Girls? Already?

One of the challenges we are working on with The Boy and school is organization.  He’s not getting much help at school, and as a result, a few papers are getting misplaced, and assignments will be finished but not turned in for several days.  Every afternoon, I go through The Boy’s backpack and shake my head at all of the things that were supposed to happen and didn’t.

Yesterday, I was going through his planner, and noticed some papers that had been returned from science (with smiley faces on them!), and behind those papers, I saw a piece of loose-leaf notebook paper.  Curious, I pulled it out and looked at it.

“Grillfriend” it said at the top.  I immediately recognized the handwriting and the spelling error…  It was from the girl who has been helping The Boy in his core classes – the one they use as an aide because they haven’t supplied him with one yet.

It went on to list her “mom’s phon” number, her “edres”, and the days she wanted The Boy to call.

I was at my mom’s house when I pulled this out, and remarked to her that The Boy might have a “grillfriend”.  Unbeknownst to me, he had just come into the room and replied, “She wants to be.”

Grammy and I exchanged amused looks – what a great response!  So I asked,”Did she ask you to be her boyfriend, or did she tell you?”

“She asked me.”

“Is she cute?” I asked, smiling.

“Yep!”

“Is she nice?  Well, we know she’s nice because she helps you in your classes.  What did you say?”

No response.

“Did you say anything back to her?  Did you tell her you’d think about it, or did you tell her ‘OK’?”

“I told her ‘OK’.”

All during this conversation, he was smiling, seemed a little embarrassed, but kind of proud – completely typical responses.

I wasn’t expecting this so freakin’ early.  I guess we’ll have to re-read that section of the puberty book to review what’s appropriate, and we’re going to have to talk about how to treat girls. GIRLS!  I’m surprised but also delighted at how The Boy is reacting to all this.  It’s all so stinkin’ cute.