End of the Week Cha-cha

stairs-man-person-walkingThe Boy’s special ed teacher has been out since Tuesday this week at a conference. We prepped him for it, he met the sub the previous week, and we did what we could. And he did well. Until the end of the day Wednesday.

At home, we heard rumblings about having to leave school early again to catch the bus. With no special ed teacher to email Thursday morning about his anxieties, I emailed the principal. In the meantime, he had told the sub he was getting a ride home with me, and emailed me about “everyone being absent”. It resulted in two administrators being involved (the one I contacted and the one the sub contacted), and the TA being asked to send me an email, cc’d to a list of people about how he was just fine, and how they had adjusted to his needs.

M’k…

Today, just before 10 (middle of 2nd period), I got a call from the counselors office – The Boy was there and was a little agitated about all the people who were absent and wanted to chat with me. We chatted. He seemed better and we hung up. An hour later I got an email from him saying they were closing many schools due to the weather today. Again, I tried to reassure him. After 3rd period, I received another email from the TA (cc’d to a shorter list of people) saying he was fine in 1st and 3rd periods, but did go to the counselors office during lunch. Oh, and he was insistent that the football game tonight was cancelled and Monday would be a holiday.

I could go off about the TA obviously not having a clue about anxiety or anyone being “fine”. But I won’t. We obviously took some steps back this week, and may miss out on his second marching band performance if he’s still anxious this afternoon after school. But…

  • He vocalized his concerns, both at home and at school – self advocacy!
  • He made his own way to the counselors’ office when he was overwhelmed with anxiety!
  • He feels comfortable enough in his special ed classroom that his anxieties seem easier to manage there!
  • And the staff was responsive and patient with The Boy.

So while it pains me to see him struggling, he is making great strides at the same time. I am proud of him, and grateful to be in a school that seems to, for the most part, be willing to give him what he needs, even if it’s plenty of time to calm down.

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Wrapping it Up

The Boy has nine and a half more days of school, and where we live, that equates to end-of-grade testing. He has three tests this week, and one next week that attempt to assess everything he learned in the entire school year in all four of his core subjects. I’m pretty sure the educational community determined decades ago that these tests are a poor way to assess any kid’s knowledge, and I can tell you right now, they are a huge waste of time for my kid.

I don’t think he’s passed one since we moved here. Does that mean he hasn’t learned anything in any of his classes? Nope. But they still require them to take them (although, thanks to his IEP, he doesn’t have to pass them to move on to the next grade!).

Testing is hard for my kiddo, anyway. He needs extended time and breaks. All of that means that these tests take him ALL DAY LONG. And he hates them. Wouldn’t you?

This year, for the first time, I’ve heard him self-advocating, complaining about the length of these tests. And unfortunately, there’s nothing I can do about them. But I have offered him a treat after school every day that he has one, as an incentive to “do your best, that’s all you can do!”

Here’s to the teachers and kiddos struggling to slog through the crap at the end of the year so some bureaucrat somewhere can check his box that it was completed. It’s not one of life’s prettier lessons, but it is a life lesson – sometimes you just have to do it, even though it’s stupid. And it’s one we all have to learn, sooner or later.

Good luck!

night-office-shirt-mail

An Autism Registry?

While perusing my usual Facebook stream, I came across an article about two brothers on the spectrum who created an autism registry and are working to make it live in their state with the aim of helping law enforcement understand when a person they need to speak with has autism.

While I applaud the ingenuity and self-advocacy of the brothers, and understand the intent, this still strikes me as the wrong way to go. Unfortunately, many law enforcement personnel in this country do not yet have CIT training (crisis intervention training), which is the basic understanding that people they deal with may have mental health or neurological issues, and need to be approached in a different fashion. It’s a very real problem with those on the spectrum ending up arrested for refusing to identify themselves or lashing out at officers. This was a major reason we spoke with the sheriff’s department ourselves when the MHP owner reported The Boy to them for things he did not do. The Boy got to see the inside of the Chief Deputy’s vehicle and now he knows him by name and sight, and the Chief Deputy has a relationship with my child so if there ever is a situation, he will hopefully be seen as a person with special needs rather than a perp.

A registry has scary connotations, and possible unintended consequences. My child is not a danger to others, which is what most registries are used for. Registries are also used for public reference, like the sex offender registry. Will people be able to access this registry so that they can choose whether or not to purchase a home near a child with autism?

The premise of a registry is that the people on it are different and need to be classified. While I accept that those on the spectrum may not be neurotypical, they are now 1 in 68 of us – is that really so different?

And finally, I keep coming back to this question in my current battles with the schools. Would you do the same to a child with cerebral palsy? juvenile diabetes? Down’s Syndrome?

Rather than settle for a second-best precaution, I think we need to spend more time and effort on getting all law enforcement officers CIT training. If the premise in education is that any intervention that helps a student with an IEP could help (and probably will help) children without one, shouldn’t that premise extend to law enforcement? That any intervention extended to a person with special needs would benefit a person without them? If we approach each other as people first, many of these issues would not exist.

So, no registry for us, thankyouverymuch. We will stick with building personal relationships within our community. You?

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part I

reasonIt’s been quite a while, but 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.

When asked (Q25) Why he jumps (or stims), Naoki says that those on the spectrum “react physically” to emotions, and that their bodies at that point do not allow them to move as they wish.  Jumping allows him to shake “loose the ropes that are tying up my body.” This is an interesting perspective and while it goes along with the accepted understanding that stimming “feels good,” it adds a piece that wasn’t there before – it feels good because it is an attempt to free oneself from a body that doesn’t react exactly the way one wants it to.

Question 27 asks Naoki why he covers his ears.  He explains that it isn’t the volume, but rather that the multiple noises become disorienting and scary.  Covering his ears restores his sense of where he is, and allows him some control over his surroundings.  I think we often forget what a struggle it is for many of our kiddos on the spectrum to process sensory information that has absolutely no effect on us neurotypicals.  Add that to my list of basics I tend to forget!

In his answer to Question 28, Naoki reaffirms that many on the spectrum have no sense of where their limbs begin and end, and that results in awkward movements and the inability to know when he’s even stepped on another person’s foot.  This is why I think The Boy loves water as much as he does, because it provides that constant sensory input to let him know where he begins and ends.

Question 31 deals with eating and why some on the spectrum are “picky.” Naoki says he doesn’t really have this issue, but understands that for those that do, “only those foodstuffs they can already think of as food have any taste.”  Everything else, i.e. new foods, are received as play-food that doesn’t sound too tasty.  He hypothesizes that it may just take more time for them to “appreciate” the taste of unfamiliar foods.  This explains a lot. Often, if I can draw a connection from one food that The Boy likes to eat to another unfamiliar food, he is more willing to try it, and this explanation is a pretty good one, I think.

There are a few more questions in this section that I will tackle next.  This is one of those books that is great to read, and re-read again and again, as you’ll pick up something new each time, I think.

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.

 

Up All Night

poor babyThe Boy is prone to abusing screen time past bed time.  This is a bad habit that has developed, and after last night, I know I need to do something.

Last night, The Man and I were awoken at a little after 2am by The Boy, pitter pattering about the house, doing whoknowswhat.  I got out of bed, caught him awake and bouncing around his room, and reminded him that after lights out, he was to stay in his room and sleep, unless he needed to use the bathroom.  “Oh yeah,” he said, “I remember.”  In the meantime, The Man had turned on the TV, which he does when he can’t sleep, and which also results in my not being able to sleep…  This isn’t going to work.

I had mentioned to The Boy several times in the past few days that once school started, we would need to re-institute “lights out” at 9:30pm (“lights out” doesn’t include his actual light – that stays on all night.  But I digress….).  I talked to him about school starting at an earlier hour this year, which made him nervous that we would bump back his bedtime.  I assured him that it would remain the same, but we really couldn’t be on the electronics all night long.  That really wasn’t gonna work.

This morning, I brought it up again.

“When school starts, your computer and your iPad are going to have bedtimes, too,” I said.  “But that means my iPad time will be limited again!” he replied, logically.  “Bedtime is for sleeping, and you shouldn’t be using your computer or your iPad past bedtime anyway, so it’s not really limiting your time.  We’re going to have to put them up for the night – their bedtime will be the same as yours.”

“Can they sleep right here?” he asked, indicating his bedside table with a twinkle in his eye.  I know that twinkle… “I think you might try to sneak and use those computers after bedtime,” I replied honestly.  “I won’t!!” he promised, but I know better.  “What happens if I catch you using it after bedtime?” I asked, reasonably.  He took a minute and then said, “Then you can take them and put them up somewhere else.”

Gotta love this.  Negotiating, advocating for himself, and determining his own consequences.

He’s growing up!

Earning Back the iPad: Self Advocacy

alarm clock, bought from IKEA

Originally, when I developed the plan for The Boy to earn back his iPad time, he would get his time back upon completion of the four-week chore program.

The Boy had a different idea.

He interpreted the plan to mean that if he did some chores, he would earn some additional time the following day, and when we talked about it, I realized that was a much better plan.  Immediate (or rather immediate) rewards work much better than delayed rewards.

So I amended the plan, and it seems to be a great motivator.  A little self advocacy at work from The Boy, and Mom learns something – win-win!

PS We purchased a Griffin Survivor case for the iPad, and so far we all like how tough it is!