Peer to Peer: How to Make Sure Pranks on Kids with Autism Don’t Happen

Posted on October 14, 2014 by simpleijustdo

There are too many stories of horrific acts done to kids on the spectrum these days. The ice bucket challenge “prank” in Ohio, the boy in Pittsburgh duct-taped to a soccer goal… Targeted hate crimes if you ask me. I’m appalled that schools and law enforcement seem to be utterly reactive in these situations, as well. Taking plenty of time to “investigate” while handing down weak “discipline”. It is so utterly disheartening to read about these attacks.

What I know is that the chances of that type of thing happening in the district where The Boy went to school from kindergarten through 5th grade were and are slim to none. Why? Because they were proactive. When they created an autism program, they also created a program for the neurotypical students that would be encountering this population in their classrooms.

In The Boy’s case, it started as “Grub Club” where the kids in the ASD program were able to go out into the community for lunch once a month and invite an NT student/friend. The kids in the spectrum get real practice using social skills, and the NT kids get to know the ASD kids as real people, away from the peer pressure.

Grub Club morphed into the LINKS program (more info here), and by the time The Boy was in 5th grade, almost the entire 5th grade class had signed up to be a LINK. They received special “training” and volunteered to buddy up with their ASD friends in class on projects. When I watched The Boy and his classmates, they never hesitated to help him find where to go at the choir concert, and never refused a birthday party invitation.

You can’t expect neurotypical kids to know how to deal with kids on the spectrum. You can hope their families have given them some good training on how to treat other human beings, but sadly, this is not even the case the majority of the time. If you are going to teach my kid with autism how to react to the neurotypical world, you had better also be teaching those NT kids how to deal with my kid with autism. When you don’t, you are missing teaching lessons as important as anything in the Common Core. And maybe your district will be the next one on the national news, dealing with some horrific act perpetrated by your students who were never taught these important life lessons.

Another Autism Speaks Post

Posted on October 13, 2014 by simpleijustdo

The other day, while on twitter, someone began to tweet to me about how I needed to boycott Autism Speaks. I replied that I don’t outwardly support them, nor do I decry them. That person went on to try to “teach” me about Autism Speaks and how detrimental they were to those on the spectrum. I replied that I didn’t agree with the way their message is being communicated, but that they have the funding and national recognition to be able to get some much needed research done. This person then suggested several other autism groups which were much more deserving of my time (didn’t I already explain that I neither support nor boycott Autism Speaks? What time is it that I am giving to them?) and insisted that these groups also do research.

The following is a list of groups that this person suggested. I was already familiar with some, in fact already support and follow several on twitter and FaceBook. There are others on this list that seem a little less organized, and some that I don’t necessarily support. Not one of them, however, does the type of scientific research that Autism Speaks sponsors.

Let me be plain. I do not support the notion that autism is a disease. I do not support the notion that it needs to be cured in any way. I do not support the notion that autism is a bad thing. I think Autism Speaks muddies their own message, vision, purpose and intent with some of the inflammatory statements that their founders have made. For these reasons, I do not raise money for Autism Speaks, nor do I publicly support them in any way, other than to follow them on twitter and FaceBook. I do share certain articles posted by Autism Speaks that I think are helpful to those on the spectrum, and to families affected by autism. And I do not “boycott” or publicly denounce them because I feel that the types of research that they sponsor are necessary, and no one else can even come close to the scope of that research. In short, I think they serve a purpose, but I will not actively support them until they get clear on their message, vision, purpose, and intent.

I respect those with opinions differing from mine until you give me a reason not to. I don’t enjoy being needled by someone who assumes I have made an uneducated decision. I don’t enjoy it when someone assumes I support Autism Speaks because I respond to someone else’s tweet to Autism Speaks.

Feel free to check out any of these groups, as suggested by @imwithduke and see what conclusions you come up with.

goldenhatfoundation.org

autismcouncil.org

autismparentingmagazine.com

autismwomensnetwork.org

autisticadvocacy.org

It never hurts to do your own research and figure out just where you stand. No nonprofit can serve the needs of all members of the community it purports to serve. Sometimes you have to take the good with the bad for a time, and see what shakes out. Do the research, and make an informed decision. Respect those with differing views until they give you a good reason not to.

WW: Sleepover Evening

Posted on September 17, 2014 by simpleijustdo

Boys in the Bathroom

Posted on September 11, 2014 by simpleijustdo

The Boy has had his first encounter with bullying at school. I should say teasing, because bullying is really defined as a repetitive, targeted behavior, and I have no evidence that this has been going on for any length of time. Truth be told, I was very happy with the way the school personnel handled it, and took some responsibility, as well, because we kind of knew this particular instance might happen.

Let me explain.

When we first moved south, The Man noticed that anytime The Boy went into a public bathroom, he had a tendency to “drop trou” to go pee, meaning he would drop his pants in order to do his business. Apparently, this is not typical male behavior in a restroom – I would not know that, having never been a part of this particularly male experience. When The Man told me about it, and explained that he just couldn’t do that, I didn’t have an answer as to how to fix it — this is not something that I am equipped to teach him. And having hit puberty, The Boy was certainly not going to let me anywhere near him while he was anywhere near peeing. This was clearly a dad’s job, and you can understand why a step-dad may be less than comfortable with the responsibility. We ended up urging The Boy to use a stall when possible.

Fast forward to the second week of school, when I got an email from The Boy’s program teacher explaining that The Boy had been teased about doing just this, and talking to others while peeing, as well. Another group of boys reported the teasing directly to one of his team teachers, for which I am grateful and appreciative, and that teacher actually had another teacher cover his class that same day so that he could take the offenders to the teachers lounge and “read them the riot act” over the incident. “We just don’t tolerate that here,” he explained via email.

I called The Man and we decided The Boy needed a lesson in how to pee in a public bathroom, and that The Man would be the one to do it. He didn’t balk, he didn’t hem or haw. That evening, he said, as calm as ever, “Hey, I need to show you how to pee,” and The Boy said, “Alright.”

The Man and I exchanged a look, complete with two pairs of raised eyebrows…

The Man pretended our living room wall had two urinals on it, which The Boy liked, with his toilet obsession and all. The Man then proceeded to break the process into steps. “You put your thumbs here in your waistband, and pull down,” and they practiced as they faced the imaginary urinals on the wall. He explained the whole process, and explained that the reason boys do it that way is so that they don’t show their butt to everyone else, so it can be more private. The Boy paid attention, and seemed to understand.

The Man and I were relieved that The Boy seemed so willing to take instruction, and we can only hope he is using his new-found knowledge.

In any case, I was proud of them both. Sometimes a man’s gotta do what a man’s gotta do.

Re-training

Posted on September 9, 2014 by simpleijustdo

The downside of having a son with autism in secondary school is the sheer numbers of teachers we have to re-train each year. And I’m only half-joking. Most of the teachers we have encountered since the Big School Switch of ’13, have been accommodating and flexible, and have fallen in love with The Boy relatively quickly, wanting to do anything in their power to help him succeed. But here we are at the beginning of a new school year, dealing with stuff that is very clearly spelled out in his IEP, and the teachers are not yet implementing.

One of The Boy’s IEP goals directly relates to his use of the agenda, speaks to his difficulties in this area, yet within the first two weeks of school, we still only had one teacher ensuring he was utilizing it in his class. Then the homework hit the fan this week, when I had no idea two assignments even existed before they were due in science and social studies.

I emailed the teachers last night, basically copying and pasting from last year’s introductory email, explaining The Boy’s need for help with communication, planner use, and the dire need for them to let me know what the hell is going on, but stated in much more genteel language. And I got some nice responses. Yet in today’s planner entry, there was clearly still some misunderstanding from whoever-it-was that was writing in the planner (clearly not the teacher – an aide? a substitute? Who IS this person telling me that his assignment wasn’t finished and needed to be finished by tomorrow??).

And then there were the assignments we had busted our butts to make sure he got done, that were returned in his planner this evening without having even been turned in. Yet another area of difficulty, yet another area in need of training.

After several emails, I finally got some traction and his program teacher has agreed to meet with his teachers tomorrow to review this stuff so we can get him going on the right track before he gets too behind. Thank goodness I don’t have to re-train her every year! She’s worth her weight in gold. 🙂

Bathroom Videos: No Tolerance Update

Posted on August 19, 2014 by simpleijustdo

A couple of weeks ago, The Man and I had to put our foot (our feet?) down and say no more bathroom videos. I was extremely worried about the suddenness and severity of our decision, but there was no going back — I could only hope for the best, and merely wonder how we would handle anything else.

You know what? So far, so good.

He hasn’t tried to sneak the iPad in anywhere, and in fact, has dropped the habit of bringing it along everywhere, except to Grammy’s for his weekly sleepover. He will still head straight for the bathroom whenever we stop somewhere, but that’s completely fine as long as he’s not recording anything.

The obsession with toilets themselves is still alive and kicking, but has abated somewhat, replaced to some extent by Teenage Mutant Ninja Turtles. I can’t complain about that a bit.

I’m more than a little surprised at his response, and cautiously hopeful that this will not return to bite us. Here’s hoping!

A First: Saying No to an Obsession

Posted on August 6, 2014 by simpleijustdo

Obsessions are a part of autism. And most of the time they are at least benign (like Sonic the Hedgehog), if not something we parents wish to encourage towards a future career (like computers). Usually, we tolerate the obsession until we ourselves become experts, learning about every type of car dome headlight that is made on the planet. Sometimes we have to limit the time we talk about cats for our very sanity.

But I have never before had to say no to an obsession.

Several years ago, The Boy had an obsession with toilets. He went through a period where he learned just about every brand of toilet, and would watch YouTube videos of toilets flushing all day if we let him (and yes, there are lots and lots of YouTube videos about toilets, if you didn’t know). And after awhile, as most obsessions do, it petered out, replaced by something else.

And after his visit to his dad’s this spring, The Boy’s obsession with toilets resurfaced, as obsessions sometimes do (especially after infrequent visits with his dad). But this time, he graduated to an obsessive (almost compulsive) desire to experience real live toilets. He would spend hours in the toilet aisle at Lowe’s (if we let him), and at the Habitat for Humanity ReStore. He began to take his iPad into the bathrooms at home and at Grammy’s to videotape them flushing. And then he began to take his iPad into public restrooms, when empty, to videotape them, as well.

He seemed to understand that it was not OK to make videos when other people were in the restroom, but that necessitated our waiting until the coast was clear, which was not always easy. And then the obsession intensified so that he would need to see and/or video every toilet at every stop we made in a day (and if you’ve read the blog at all, you may remember that The Man stops in quite a few convenience stores in a day to refill his diet coke or to pee, the only vice he has).

And then a few weekends ago, we spent $50 to take a ferry ride to a nearby National Park site (The Boy’s idea so he could “visit” the toilets there), which resulted in a meltdown and another ferry ride back within the hour. I didn’t even get to the beach.

I began to plan a reduced amount of time where he would be allowed to do this, which I knew would be painful.

And then we had another incident this past weekend. And we had to just say no more. No more videotaping of toilets in public restrooms. We were in the car a couple of hours from home, so he couldn’t run away, and couldn’t really rage too much. He is a better listener and communicator in the car. He wasn’t happy, and I wasn’t comfortable with the complete elimination, knowing it would be a very difficult transition for him. But he seemed to accept it by the time we arrived home. “I can take pictures with my invisible camera and save them to the cloud,” he said. “Or you could take them with the camera in your mind and just remember them,” I offered. He seemed to like that.

The Man and I were cautiously hopeful.

The next day, the Boy expected to be able to go videotape some bathroom again, and again I told him we weren’t going to do that anymore. He still didn’t like it.

“I guess I’m not interested in that anymore,” he said angrily. And my heart broke a little.

I know his interests are a part of him, and by saying “no more” it is hurting him. But he is a big kid now, taller than me, and people out there are not as patient with tweens as they are with the cute little ones. I just don’t trust that someone won’t call the cops on him for being creepy. We have explained that to The Boy in the simplest terms, and I hope he is starting to understand, but there’s really no way to know.

So far, it hasn’t been a daily battle, but I think it will be tougher on the weekends, when we are out and about. I know we need to try to “replace” this obsession with a new one, too, but that is much easier said than done. So this will be a struggle for us, and we’ll just have to see how it plays out. It’s a first for all of us, and no fun for any of us.

Wishing and Hoping and Praying…

Posted on June 30, 2014 by simpleijustdo

Recently, I read a blog post by Autism Daddy, and response to that post from another… all centered around the old debate of whether or not you would take your child’s autism away if you could.

And I didn’t respond.

This has become a hotly contested debate, replete with comments like “Anyone who says they haven’t ever wished their child didn’t have autism is LYING!”

Here’s the thing. Autism is a spectrum disorder, and often co-morbid with many other diagnoses. Those with children on the severe end of the spectrum probably voice this wish every single day, and who could blame them. And maybe there are some who even wish it every day for their child on the less-severe end of the spectrum. You know what? That’s OK. That just hasn’t been my experience – it’s not me. Never has been, and never will be. Nor do I judge anyone else’s feelings – they are all valid, even if I personally think following this line of thought is a monumental waste of time and energy.

I believe that everything I have experienced has made me who I am today. I will admit that there are times I wished I had never been married to the ex, but they are extremely fleeting because my next thought is, “But then I wouldn’t have The Boy.” And that ends the line of thought right there, because I couldn’t imagine my life without him, and don’t want to. I also wouldn’t have met The Man, and wouldn’t be who I am and where I am today without experiencing that relationship with the ex. Ultimately, it has made me a better person, even if I was miserable for most of that marriage.

And I have always been one to handle a situation rather than freak out. Instead of running around like a chicken with its head cut off in an emergency, I have always tried to quickly lay out a plan. “OK, that happened, now here’s what we do…”

I can’t imagine my son separate from his autism. If you took it away tomorrow, I would have a stranger living in my house. I doubt he’d love Disney movies as much as he does, and he might prefer playing XBox to drawing and making videos and riding his bike like he does now. He wouldn’t be as innocent, or as willing to hug me. Would he even have the same sense of humor? Who knows? Not me. But he would be different. I like him the way he is.

That doesn’t mean that our experience with autism is all rainbows and lollipops, and you know this about us if you read this blog at all. We are lucky not to experience too many meltdowns, but when we do, they are catastrophic. We deal daily with issues like “How do we get him to not bring his iPad into a public bathroom, and record video while other people are using it? How do we get him to understand that saying, ‘What IS it?’ with a sarcastic tone of voice could be thought of as rude? How do we help him get over this obsession with toilets, for God’s sake??”

I have said before that I would love to know him better, and that’s my biggest frustration with autism. I fear for his future like every special needs parent does. And I fear society, and how he will be treated as he gets older, and as more expectations are placed on him to conform.

But never have I wished away his autism. It is the honest truth.

And never will I judge another parent who has.

Our Summer Plan

Posted on June 9, 2014 by simpleijustdo

So, summer break is here. How did that happen?? One minute it’s May, and the next… Well. The Boy has two weeks of vacation, just enough time to drive him up a wall. He is spending leisurely, unstructured days at Grammy’s until ESY starts up. ESY this year will consist of him meeting up with his teacher at the local library and doing God knows what school-type things for an hour and a half. And then four weeks out of the summer he will go to a day camp for kids on the spectrum and their siblings, the same one he went to last year, which he grew to love. And then he’ll have two weeks off again in August before starting up again, one of which will be spent visiting with Fantastic Babysitter and her new baby who are coming to visit (and I CAN’T WAIT TO GET MY BABY FIX!!!).

And me? I’m not missing the summer break yet. My job can be stressful, but I do not need the break anywhere as much as I did when I was a teacher. Plus I live at the beach, so any time I get too stressed… I don’t want to make you too jealous. 😉

Grammy is being the wonderful grammy that she is, and taking off work a day this week and next to take him somewhere special, maybe the waterpark, maybe a movie to spend some quality Grammy-Boy time with him. And I get off work fairly early so that we can still go do stuff together.

I’ve seen some other great ideas for adding a little structure to the summer:

This one has a theme-a-day which is great to fit into your schedule when you need it or want it
These are some great ways to prep your child for the changes in routine, and how to add some structure to the summer
And this is a comprehensive list of ideas and resources to ensure brains are still engaged in the summer months

I hope you are ready. I feel pretty good about it, at least for The Boy. I hope we still get to spend some family time together, and it doesn’t fly by too fast. It’s still my favorite season.

Let us know what you’ve got planned in the comments!