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.

There’s This Mom

Posted on November 4, 2013 by simpleijustdo

I’ve joined an autism society group in our community, and made quick friends of the few that are the do-ers (every group has a few people who do everything, while the majority… well, don’t). Recently we had a “support group” meeting, which has been more like a friendly get-together at someone’s house, and we also set up a group Halloween event so the kids could trick or treat in a friendly neighborhood.

These were the first encounters I had with one particular mom, who has a teenage daughter on the spectrum. The daughter is incredibly sweet, but is overly demonstrative, which can make people uncomfortable. Her mom reminded her that shaking hands is more appropriate than hugging people when you first meet them, but she continued to hug everyone, multiple times. No big deal here, and it cam off as rather sweet.

Mom, however, also veered into inappropriateness at the meeting, describing her daughter’s voice as screeching and unbearable, and voicing many times how she would just like to get away from her. Now these are things we all may have thought at one point to ourselves, but not voiced aloud. In any case, I worried for her while she rubbed others the wrong way that evening.

Key, zebble

On Halloween night, things took a turn for the worse. The daughter attempted to hug every person who gave her candy that evening, leaving the dads from the group (who had volunteered to take all of the kids out) at a loss for what to do, surreptitiously calling and texting their wives for advice. The mom who had stayed behind with the other moms was oblivious, I think. A group of kids (her daughter included) returned to hang out inside the house, while the moms continued to hang out on the porch, chatting and passing out candy. While the daughter continued her inappropriate displays of affection, now centered on an 8th grade boy on the spectrum inside the house, the mom continued to make her bizarre and inappropriate statements on the porch. At one point, the daughter went to change clothes, but found the car locked. She called to her mom that the car was locked, and her mom yelled back for her to “come get the damn keys.”

The mom who was hosting us that night took note of that exchange, and also took note of the PDA happening in the house, because the 8th grader happened to be her son, and finally pulled the mom into the kitchen to discuss the behaviors we had all witnessed. I’m not sure what happened in its entirety, but I know she did it with tact and care. I believe the mom and the daughter left shortly after that.

Here’s where I get uncomfortable. I completely support the hosting mom’s actions. To ignore the behaviors would not help anyone. And I firmly believe she did it in the right way. But this mom clearly needs help and support, for her daughter’s sake if not for her own. A mom voicing thoughts like that is very near a breaking point, I believe, and maybe it’s not within the realm of this group to help someone that has reached that point. But maybe it is. Maybe we do a disservice to her and those like her by being so informal in our approach, by assuming friendship with everyone. We shouldn’t have to like her to help her.

What do you think?

Is This the Moment Where the Importance of Public Education Dies?

Posted on October 28, 2013 by simpleijustdo

I was raised to believe in the power of a good education, that education is something, once earned, no one can take from you. And I still believe in those things. But I am getting a sudden, rude awakening in dealing with less-than-stellar schooling for my son. And I’m gaining a new perspective on education in general.

I’ve followed the reports about college degrees not being as necessary as they once were (or at least not getting much return on investment). I’ve seen alternatives to public schooling that work. And I have now witnessed public education that has lost its focus on children, and gone in such a wrong direction.

So what is the value of an education for my son?

What is the endgame here?

Will he attend college? Maybe — I’m not ruling it out, but most likely, no college program is going to be able to provide him with the supports he needs to learn, at least no college program that we are going to be able to afford. He is a bright boy, but it takes a lot of work on his part and the part of those educating him to see results. It takes a lot of understanding, a lot of compassion, and having the right people in the right place at the right time to make it happen, and realistically, I don’t see anything like that happening at the college level.

So the value of an education for my son is not about subject matter content. The value of a public education is in the social skills he learns. I can supplement subject matter content until the cows come home, but what I really want him to walk away with is the ability to understand neuro-typical behavior to some extent, and to be able to cope in this neuro-typical world. I want him to be as independent as possible, and I don’t think “learning” about the Pharaohs of Egypt by doing a wordsearch is going to contribute much to that goal.

Therefore, stressing about getting that stupid wordsearch done doesn’t give us much return on investment. And I’m OK with a C in a class where the teacher probably privately thinks that modifications and accommodations are unfair. I have always been much more interested in IEP goal reports than report cards, because learning to live in the world around us is our endgame. And learning to live in the world around us is so much more important than a stupid wordsearch.

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.

Reprieve

Posted on October 24, 2013 by simpleijustdo

Our meeting scheduled for today will not be happening.

I was feeling very overwhelmed, and distrustful — just what was the district doing by inviting 10 district personnel? What is their goal, here? Were they trying to intimidate me? Through some calls to friends and local resources, I was directed to call the state department of ed, because they actually have a department that acts as a watchdog for parents and students, and ensures that school districts are following the proper procedures. Come to find out, our district people had not followed the proper procedures, so I was allowed to request that the meeting be rescheduled. And I did.

It may only be delaying the inevitable, but one of the things that they were supposed to do (and didn’t) was to provide me with a list of people who have been invited, as well as an agenda, of sorts — a statement of their intention for the meeting. The delay will also allow me to marshal my own troops, which I didn’t really have time to do for the originally scheduled meeting.

I can’t tell you the relief I felt when I spoke with the incredibly supportive lady from the state. I was really struggling to hold myself together that morning. I was beginning to feel helpless and hopeless. Fighting the system is extremely difficult, and I was feeling so alone. But with all of the people I’ve spoken to in the last couple of days, I feel like I’m beginning to have a very real support network of people who can help me in my quest to get the best for my boy.

Tonight I can breathe. Tonight I can get some sleep. Tonight I can hope.

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…

This is a Stepdad

Posted on October 21, 2013 by simpleijustdo

Today, The Man and I got up early and went to the store to get 6 gallons of paint – we were finally going to start painting the house! The Man has single-handedly remodeled this place, and this summer, we replaced the siding, which was 20 years old. To save money we used panels that were “seconds” and therefore marked on the corners with blue paint. Because of those marks, staring us in the face every time we drove up, we were anxious to finish the job, and the exterior paint was almost the last step.

I’ve helped the man do a fair share of painting, in our own house, as well as on a few large jobs he’s had. But I am not a painter. I was doing pretty good this morning, but got extremely frustrated after lunch and quit. I am not usually a quitter, but it was beyond what I could handle, so I walked away. The Man finished that side of the house on his own, and then moved on to cutting the lawn.

He had asked The Boy if he wanted to “drive” the mower today, so when he was ready, he took him for a few rides around the house before he started mowing in earnest. I took a few snaps, and came inside to relax for awhile (the sound of the mower tends to put me to sleep).

And then I heard voices. I looked through the back doors and saw The Boy and The Man on the mower. The Man was directing him where to go, and The Boy was actually mowing the lawn, steering, going in reverse, slowing down, and keeping his lines straight. It was a pretty neat sight, and erased all of my earlier frustration.

Because this was more than a stepdad showing his stepson how to mow the lawn.

This is a stepdad who understands how fascinated his autistic stepson is with cars, and watches how he pretends to start his own car every time he climbs into a vehicle. This is a stepdad who took his stepson to his favorite hardware store, and asked them to give him one of the mistakes from the key-making counter, so he could have his own set of car keys. This is a stepdad who watched his stepson pretending to steer and use turn signals in his truck this very morning, and decided to give him an opportunity to steer something with a real-live running engine, while throwing a hands-on lesson in there, to boot.

This is a stepdad.

Thoughts on Homeschooling from a Former Public School Teacher

Posted on October 18, 2013 by simpleijustdo

There has been a recent trend, especially for those on the spectrum, to consider homeschooling and online schooling as an alternative to public school. For the very reason that teachers make mistakes and don’t leave their personal lives at home is why real-live teachers will never and should never be replaced by online classes. One of the lasting lessons that teaching for almost 20 years taught me was that relationships were everything. If the teacher and student can build a relationship, the chances for successful learning (by both parties) grows exponentially. And this is especially true in the case of students with special needs.

However, homeschooling is a different story.

I was against homeschooling for most of my career. I saw the effects of inconsistent homeschooling on a daily basis. Mom would get upset at the school for something, pull her kid out, “homeschool” for awhile until she got tired of it, and return him back to public school, months behind, and a behavior problem to boot because he’d been away from rules and routine for so long. My ex-sister-in-law was a classic example of a mother who “homeschooled” – Her 12 kids “taught” each other with the end result being two boys nearing the age of 20, starting to work as carpenters with their father, and neither of whom knew the correct answer to 8×7…

But…

I have changed my tune pretty quickly. Over the past few years, I have encountered people who have the intelligence and organization to handle it, as well as compelling reasons to homeschool. I was still stuck on the “socialization” issue – how would kids who homeschooled have any social skills if they only interacted with their siblings and parents all day long? But, I have found that Necessity really is the Mother of Invention, and due to the very real needs of kids with autism and other disorders that aren’t being met by the public schools, some very sophisticated networks exist in our region for those who homeschool. Co-ops have been formed so that homeschooled kids can get that socialization, participate in field trips, and even have co-curricular activities like band.

And when public schools are increasingly heading toward a business mentality, and one-size-fits-all curriculum, I think this trend will only increase. I never would have even considered it for my own son, but I look at my skills, and what passes for education here, and let’s just say I am keeping my options open.

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.