On Yelling

Posted on October 15, 2013 by simpleijustdo

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 – ★ 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.

Routines, Item Attachment, and Flare-ups

Posted on October 10, 2013 by simpleijustdo

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

The 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

Posted on October 9, 2013 by simpleijustdo

Has 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!

Book Club: The Reason I Jump

Posted on October 4, 2013 by simpleijustdo

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?

Anyway, 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!

Girls? Already?

Posted on October 2, 2013 by simpleijustdo

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.

Computers Are His Thing

Posted on October 1, 2013 by simpleijustdo

I think I’ve mentioned a time or two that The Boy knows his way around a computer. And he’s bilingual, knowing and understanding both Mac and PC operating systems. He even knows the logos of all the various releases of Windows… Yeah, computers are his thing. He can whip up an insanely creative PowerPoint like there’s no tomorrow. And now he wants to get into making videos…

Tonight, my iPhone suddenly and inexplicably went to that setting where everything on the screen looks like a film negative. I was familiar with it because a year or two ago, The Boy thought it was hilarious, and would change the settings on anyone’s phone left lying around. I couldn’t remember how to undo it, so I called him from his room, “Would you come here? My phone did that thing, and I need you to do the thing to fix it…” or something along those lines.

I handed him the phone, and literally the next second, he handed it back and said, “I fixed it.”

The Man was shaking his head, in disbelief, and I demanded, “HOW did you DO that?!!”

He said, “I pressed the home button three times, and that fixes it.”

Oh. Ok. Good to know. Thank you, Sweet, Smart Boy. Thank you. You are amazing. ❤

New Friends, New Opportunities

Posted on September 30, 2013 by simpleijustdo

The Boy and I went over for a “playdate” of sorts with some new friends from our local chapter of the Autism Society. The Boy had gone to summer camp with this boy, and I’ve leaned on his mom quite a bit through our schooling struggles. The boys had a blast – it was very neat to see The Boy getting along so well with kids his own age (or thereabouts), and I was grateful just to have the chance to do it, and the chance for him to make some real friends, something he hasn’t yet done at school.

And I can’t overlook the chance for me to make friends. It can be a bit lonely moving away from almost everyone you know. I still love my friends from up north, but I can’t hang out with them by any means, and so I spend a lot of time by myself, especially being underemployed. It doesn’t lend itself to maintaining your sanity, let’s just say, so it was nice to get out and just hang out with someone, especially someone who really gets what I’m going through right now.

The last time he rode the bus, The Boy was in kindergarten…

One of the things we have been talking about has been a possible switch in schools for The Boy. We’re hoping to get him into a pilot program at a middle school across the county which is aimed at high functioning kids on the spectrum. It happens to be housed where our new friends go to school (across the county, requiring busing), and New Friend’s Mom can’t say enough good things about the special ed staff, who really seem to know autism, front and back. So, we are pursuing it, because his current school is still not following his IEP, and seem to be taking their sweet time even implementing any of the county specialists recommendations.

It would be a tremendous transition, again, and we have weighed that into the decision, but at this point, I strongly feel he is not in the correct placement, and I’m ready to fight to get him into this program (even though I don’t think I will really need to).

So keep your fingers crossed for The Boy. New opportunities may be on the horizon that would be much better in the long run, but may be a little painful at first. Just another day on the spectrum.

The View from the Other Side Is Blurry

Posted on September 19, 2013 by simpleijustdo

I had a post drafted for today, but I had to revise it. I’ve mentioned the struggles we’re having with The Boy’s new school, and how little they seem to know about autism, and how to make modifications and accommodations that are necessary for him to thrive within the general education curriculum. His teachers came to his IEP meeting with that deer-in-headlights look, as if they have never seen a creature like my son before, and had no clue about how to assist him in his learning.

As a teacher, I knew that ineffective teaching existed — I just didn’t really witness it. I taught for over 17 years, and rarely did I work or come into contact with colleagues from whom I wouldn’t want my son to learn. There were strict teachers and lax teachers, friendly teachers and more distant teachers, scattered teachers and organized teachers, but essentially they still knew what they were doing. It was even more rare to come across a teacher who was not good with kids. Even teachers who were not warm and fuzzy were still able to form relationships with kids and treat them fairly and professionally.

I guess that’s why I’m having such a hard time with one of The Boy’s teachers in particular. They all seem a little lost in terms of autism, and a few seem a little scattered in terms of general teaching skills. This one in particular has problems communicating, both with me and The Boy. She assigns a crazy amount of work, even for a neurotypical student. She uses rubrics, but they do not seem to assess knowledge of social studies content, rather the processes by which the content is expressed – for example, there is a public speaking rubric for sharing current events, and a writing rubric for a research project. I don’t know for sure, but I can guess that she is not teaching about public speaking and/or writing in her class, so where are the assessments that give her information on what the students have learned from her?

More importantly in our own case is that she seems to dislike having a student in her room that isn’t “normal”. She decided on the second day of school that The Boy should be placed in the resource room rather than go to her class because he wasn’t “doing the work”. She wrote in his planner last week that he wouldn’t “answer” her. She sent me an email today, saying that The Boy had printed off 43 pages from the internet in the computer lab yesterday and that there is a rule against printing without a teacher’s permission. She has made only one modification since the beginning of the year, giving The Boy a modified review sheet and quiz that she had printed off from a “special needs workbook” published by the textbook publisher, and refused to give him extra time to study as I requested, and which is also an accommodation spelled out in his IEP.

When I got the email about computer lab printing rules today, I could hear my pulse quicken, could feel the blood in my veins heat up, saw my hands clenching into fists involuntarily. I took a breath, and reminded myself not to answer immediately (calm down, Mama Bear – Ha!). After a few minutes, I responded that I would reinforce the printing rule with The Boy when he returned home, but also asked her to please remember that he has a hard time asking for help when he needs it.

And then I sat down to write this post.

And this seemed like even more proof that this woman was not nice, would continue to be a source of frustration and obstruction this school year, and was looking for any excuse to prove that my son can’t.

…

And then she responded to my last email, telling me she knew he didn’t do it on purpose, and that he shared his research project in front of the class by sharing his maps while she read his points of interest, and the children clapped for him. She said it was a successful day for everyone.

…

And all of a sudden, my impressions of her became blurred, and a little bit of hope peeked through.

I can only hope that we will all learn a lot this year.

A ray of hope?…

Amidst the Angst, I’m Really Thankful

Posted on September 5, 2013 by simpleijustdo

I know lots of people do “Thankful Thursday” posts, but I wanted to pause in my week-long rant/neurosis/panic attack about The Boy and our concerns with his current schooling situation to express how really lucky I am.

I’m so happy that we’ve moved. We have a very, very nice home that is paid for – no mortgage, no rent. This has allowed me to avoid panicking about still being virtually unemployed.
I’m so happy to be married to my husband. We waited a long time to be together on a daily basis, and now that we are, I still have to pinch myself from time to time.
I’m so grateful to have a partner to help me with the daily routine. He’s still learning about The Boy, especially now that we are all in such close proximity, but it’s not all on me anymore, which was a heavy burden to bear.
I’m so happy that we are so close to my parents. They are some of my closest friends on the planet, and having them 15 minutes away is something I haven’t had in a long, long time (and The Boy hasn’t ever had!).
I’m thankful that I have enough in the bank to lean on until I start getting paid regularly, and until I find a more meaningful, full-time position.
I’m really grateful that I have the time, background, and fortitude to do what’s apparently necessary for my son’s education.
I’m so thankful that my son had such a good education up north, which has shown us that he is capable, and that he has this solid foundation on which to build in middle and high school.
I’m happy that my son is apparently enjoying middle school, even if he isn’t getting everything out of it that he could be right now.
I’m really glad to have a fledgling support network down here: even though I don’t know many people, I have hooked up with some great people in our local Autism Society chapter who have been so helpful to answer questions and offer support.
And I am so thankful for my boy. He makes me laugh just about every day, even on the days he makes my head spin, and my eyes roll. I don’t know where I’d be without him!

Deep breath. I have a lot to be thankful for! 😀

Struggling

Posted on September 4, 2013 by simpleijustdo

I’m really struggling here. I have never ever had to worry about what went on at school for The Boy. I knew how lucky I was then, because I read horror stories of what goes on in most school districts, but we were fortunate enough to have a great program, and the absolute best teachers who fought on our side the very few times it was even necessary.

Here, I think I have sent 40 emails in the past week to The Boy’s school personnel. In addition to three meetings.

And the hits just keep coming. There is still no aide, although the county autism specialist sent a TA to the school in the mornings to assist. But only for this week. I had to walk him back into the school yesterday when I found all of the school supplies (you know, from the supply list that they make available in the summer?) still in his backpack — He’d been carrying them since the first day of school and I had asked multiple times for someone to assist him in getting those things into his locker. He still has his PE policies parent-sing-page in his backpack, all filled out, but not getting to its destination, plus several random untitled assignments – not checked, unacknowledged.

Last night, he had written that he had science homework in his planner, but neither what it was nor was it on the correct day. I was clueless, so I emailed the teacher, after checking her website and still being clueless. She responded to explain the assignment, and I responded thank you and we-may-need-some-more-time-on-this. No response. (Mind you, the assignment was to make a list of the characteristics of a science teacher and then draw a rough sketch of a correlating picture, and they will do a final draft of the picture in class, the purpose of which is to supposedly give the teacher a sense of their “work ethic”…)

While checking websites, I checked his social studies teacher’s website. I saw that the “hot dog foldable” had been due yesterday, again no explanation of what that was. I remembered something floating around his backpack that seemed like it fit the bill, so I made sure he completed that last night. I also noticed on her website that they were given a “research project” today. I had no idea what that was, but knew I wouldn’t be able to get any more work out of him last evening, so I let it drop. Then, I actually found the assignment in his binder this morning – it had an explanation and a rubric and everything! The goal was to help foreign visitors understand the “key historic, geographic and economic features of a region” – The Boy’s region was apparently “London”. They were supposed to write up a four day itinerary, and include a map, outlining the route. Got this assignment yesterday, due today.

So on top of my son having needs that aren’t being addressed in class, due to a lack of an aide to help him attend to tasks at hand, he also has needs that aren’t being met in terms of his organizational skills, and no one helping him to keep track of assignments. No one is modifying assignments to my knowledge. And we have a range of assignments from drawing pictures to one-night research projects!

If The Boy didn’t love school so much, I would seriously be considering homeschooling right now. It’s totally not out of the question…