I’m Tired

Posted on November 11, 2013 by simpleijustdo

I’m tired of responding to emails about The Boy refusing to do his work, or clearing up miscommunications about tests and modified due dates. I’m tired of having meetings that go on and on about how he has basic characteristics of autism. Yup… We knew that already. I’m tired of people who apparently don’t have a dictionary or basic internet access, and still don’t understand what a modification is, or what autism even is in the first place. I’m tired of teachers trying to penalize him for “refusing” to do his work. I’m tired of receiving an email that sends me into a frustrated tailspin for the rest of the day. I’m tired of teaching my son about Egypt and minerals because for some reason they just don’t know how to teach him this stuff at school. I’m tired of politely telling them how poor their assessments are, for any child.

It’s overwhelming, and it has become my full-time job. And it can’t be. Pretty soon, I will not be available at their beck and call, and I will not have hours to prepare lessons for my own son. Because I need to work for real, and earn real money ASAP.

I know he is one of the 70 kids you see in a day (and don’t try to tell me you have more, because you don’t. There are only 70 sixth graders in the school). I know you feel like you don’t have the time to spend on this one child. But if there’s one thing you should have learned over the span of your careers is that the amount of time you spend on each child will never be equal. Some kids need more of your attention, and the equitable thing to do is to provide it, instead of throwing your hands up in the air and saying, “I just don’t know what to do!”

The internet is an amazing thing. You can find YouTube videos on just about anything. Hell, I don’t even teach PE, but I was able to find a resource on how to provide accommodations to students with special needs on the President’s Physical Fitness Test by simply typing all of that into my google search bar. It took me less than 10 seconds.

I just spent an hour searching “autism work refusal” and got some really helpful information from a bunch of sites. It’s not all helpful, but the search provided ideas for how to engage students on the spectrum who will not do classwork (and who won’t even show up for school), rather than punish them, and “hold them accountable”.

My kid loves school. My kid thrived in his old school. My kid has adjusted so incredibly well to the structure of middle school. They have so much in their favor, and they still can’t make it happen.

I can’t make his teachers want to help him, and I can’t help him all on my own. This is my conundrum, and this is why I’m tired.

Big Meeting, the Second Time Around

Posted on November 7, 2013 by simpleijustdo

Our rescheduled IEP meeting is today, and let me tell you, I feel so much more prepared this time around. I am so glad that I was able to call them out on a technicality and give myself some more time to gather my wits and my resources. Today, I’m bringing our regional rep from the Autism Society in our state. I’ve talked with her a bunch over the last couple of weeks, and she will be there to advise me, and be an extra pair of ears.

They will still have a passel of personnel in attendance, but they don’t scare me anymore. I have data from his previous school that supports everything that I say he needs and isn’t getting. I have documentation in the form of emails from his current teachers that supports everything I say he needs and isn’t getting. And I have a better understanding of their intentions, as well as the process, and my rights.

And my focus now is on the IEP, even though we will be discussing placement, as well. He needs and aide, he needs autism-savvy teachers, and he needs help with organization. Period. I would like to see him go to a school that is better equipped for his needs, but I’m not as steadfast in that as I was, because I’m not sure I want him in a school where they so obviously are against him being there. When it comes down to it, no matter where he is placed, we will continue to have a fight on our hands, and now that I know that, I am better prepared to roll with the punches (Inner Biker Chick is present and accounted for, thankyouverymuch).

What a difference a couple of weeks makes. Let’s ride!

Laura & Margie – biker chicks, mslaura

Book Club Discussion: The Reason I Jump, “Earthling and Autisman”

Posted on November 6, 2013 by simpleijustdo

I’m continuing the discussion here today because The Reason I Jump is an important book. Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 22 asks, “Do you hate it when we make you do things?” Naoki explains that kids with autism often don’t know how to do things the same way as neurotypical people, no matter how many times they are shown how. He explains that they understand that we don’t know if they are even listening or understanding, but that they still want to do their best, and they know when someone has given up on them. “When we sense you’ve given up on us, it makes us feel miserable. So please keep helping us, through to the end.”

Question 23 asks, “What’s the worst thing about having autism?” Naoki says we can’t imagine how miserable kids with autism are. An inability to communicate makes it that much harder. He says, “We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.” I have found that people assume those with autism to lack empathy, but my theory is that people with autism actually have an overabundance of empathy, and that many of their behaviors are an attempt at trying not to feel so much. When I have been able to point out The Boy’s effect on those who love him, he is usually much more able to control his behaviors.

Question 24 asks, “Would you like to be ‘normal’?” I know what I was hoping to hear. Naoki says that when he was younger, he would have jumped at the chance to be normal, but not anymore. He says that by striving to do your best, and that is how you achieve happiness. He says, “For us, you see, having autism is normal – so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.” Are you crying yet? Such wise words from a young man.

I hope that you’ve gotten your hands on a copy of this book. Even if it isn’t the experience of every single person with autism, it is the experience of one, and that’s worthwhile.

Hostile

Posted on October 25, 2013 by simpleijustdo

Many of The Boy’s teachers have admittedly low exposure to students with autism. We’ve already mentioned the social studies teacher and her issues, several times. One of the teachers who has admitted from day one that he doesn’t know what he’s doing has been The Boy’s band teacher.

Now having been a band teacher, I have been more than willing to help, offering suggestions, explaining things to him, and we have had a pretty good relationship because I know he is trying. We had gotten into a routine of communicating via email, and he would let me know the assignments, and I would send him the practice log.

A few weeks ago, he didn’t let us know that the assignment had changed, and in fact, didn’t email me until after The Boy had taken a test on material he had never practiced. The teacher had realized his mistake, and emailed me with the week’s assignment, and that he would let The Boy re-take the test the following week.

That meant that the following week, we were practicing what the rest of the class had already finished the week before, and started to put The Boy behind the ball in this class.

And now this week, we have taken a different turn. I’ve been emailed several times, with efforts to “document” what the teacher feels is a disciplinary issue, with The Boy “refusing” to play. I explained that we were behind because of the earlier issue, and that we would try to get him caught up as soon as possible. And I continue to get emails, like the one this morning, asking me to “explain a discrepancy”: The Boy is struggling in class with pieces that I indicated on the practice log that he could play without difficulty.

Turns out, after closer inspection, I was using his symbol system wrong, and that in his minus, check, plus system, the check is the highest score… Mea culpa.

But this leaves me to wonder. Is the lack of knowledge of autism leading these teachers to act in this way? To want to kick The Boy out of their classes, or to prove that he “can’t” do what everyone else does? As a former teacher myself, I can’t identify with this, and I don’t understand it. The knowledge of a diagnosis in one of my students immediately caused me to be more compassionate, more flexible, and often spurred me to do my own research on the condition.

I suppose its root is fear. Maybe, with training, these teachers can be led away from their hostile instincts. Or maybe not. In either case, this is what we’re dealing with, and it’s confusing, it hurts, it angers. And I only have so much patience for teachers like this who should never, ever hold a child’s issues against them.

Big Meeting with Big Wigs = Big Deal

Posted on October 22, 2013 by simpleijustdo

This Thursday, I have a big meeting at The Boy’s school to first review and update his IEP (necessary only because when you move to a new state, they follow the previous IEP for 30 days, and then completely re-do it to fit their own needs), and second, to determine if he will be switching schools.

The county (district) has a pilot program that is housed at a different middle school across the county. It is for kids with autism who do well academically, but need help with social skills and organization. My friends here have suggested it for The Boy, the county specialist has suggested it for The Boy, and I thought, “Yes, this sounds perfect for The Boy, especially in light of the fact that no one at his current school even knows what autism is…”

So we got the ball rolling, and the county specialist asked the program teacher to come and observe The Boy… and that’s where we hit a snag.

The program teacher said she wouldn’t recommend him for the program, by and large because of the size of the pilot program’s school – it is much larger than his current school, although not much larger than the school he came from up north, I’d like to point out. The specialist said we would meet to review his IEP, and then the team would make a decision about whether he could go, or whether he should stay where he is.

And now, I’ve been notified that “the team” now includes the usual characters, as well as the assistant director for special education in the county, and both the principal and assistant principal from the pilot program’s school…

Um… what?

Why has this blown up into something so huge? We’re talking about admitting one little 6th grader into your pilot program… I don’t get it. I can’t begin to fathom their intentions, and to be honest, it’s intimidating. I’d like to bring an advocate, but for several reasons, that isn’t an option right now.

I’m meeting with my “allies” after school today so that we can plan our “strategy”. It disgusts me that this is how special education in the public schools works. Our kids deserve better. My kid deserves better.

Wish me luck…

Autism Awareness is Still Quite Necessary

Posted on October 17, 2013 by simpleijustdo

The debates within the autism community continue to rage on, and one of the trendiest arguments to have right now is whether you support Autism Awareness or Autism Acceptance (as if supporting both is somehow not an option). There are those who will have you believe that the national nonprofits that promote Autism Awareness are not doing enough – “Promoting awareness is not enough!”

I’m here to tell you that this move to the south has proved that we still have a long way to go with Autism Awareness.

I’m not going to generalize about this region, although it is shocking how few services there are here in comparison with where I lived up north. What resources are here are new, as in within-the-past-few-years new, and I think, “We should be past this shouldn’t we?..”

I’ve communicated with teachers who claimed to have no previous knowledge whatsoever of the types of common autistic traits The Boy exhibits, and how to modify and adjust for that in their classrooms. New teachers and old teachers alike who have no awareness.

And my struggles with The Boy’s current placement have shown me that his school, although having had autistic students in the past, is still quite ignorant about just what autism is.

So yes, I wholeheartedly support Autism Acceptance – what parent of a child on the spectrum wouldn’t?? But I must say that even today, Awareness alone isn’t a safe bet. And I believe you have to start somewhere.

Book Club Discussion: The Reason I Jump, “Slip Sliding Away”

Posted on October 16, 2013 by simpleijustdo

I’m continuing the discussion here today because The Reason I Jump is an important book. This young man has answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 11 asks about eye contact, and Naoki explains that focusing on the words that you are saying, the auditory input, causes his sense of sight to “sort of zone out”. We’ve heard this before, and is probably the reason we turn down the radio when we’re concentrating on driving directions. When we focus on sensory input from one sense, the others tend to drop in priority.

Question 14 asks, “Why do you ignore us when we’re talking to you?” Naoki says that it relates to perspective, something I’ve learned in photography. When you focus in something in the foreground, the background is not in focus, but when you focus on the background, the foreground is not in focus. He says, “It’s very difficult for us to know someone’s there and that they’re talking to us, just by their voice.” He says it would help a great deal if you could use a first name to get someone’s attention before speaking to them. This is something that hadn’t occurred to me, but again, makes perfect sense. If people with autism have a difficult time understanding social cues, voice inflection is a big part of that, and some other cue to begin the conversation is required, as Naoki suggests, possibly the use of the person’s name.

In response to Question 17, which is about rather an individual issue of waving goodbye backwards, with his palm facing himself, something that Naoki has done since he was a small child. He says, “imitating movement is difficult for people with autism,” and to some extent I think he is right. When The Boy and I were at his new-doctor appointment the other day, she asked him to bend over without bending his knees so she could check his spine, and he had a difficult time. I bent over to show him what she meant, and he still had a difficult time. We never did get it quite right, although the doctor was still able to do her check, but this does ring true for us.

I encourage you to read along with me. No one book can give us all the answers, but this young boy’s determination to help us understand autism through his eyes should be rewarded with readers.

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.

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!