Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.

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Biting My Tongue

My fingers are itching. Itching to write a response to an email. I’m refraining. It’s a Herculean task, but I’m managing.

After two days of just trying to keep my kid in the school building due to his raging anxieties about the absences of his teachers and friends, I get an email from the-special-ed-teacher-who-has-no-clue. “Up until today, he has consistently missed class since spring break due to stress,” she writes. She says she and the aide have been “unsuccessful in getting him to complete anything in class.” She ends with, “Please continue to encourage him to come to class and just do his best. I keep reassuring him he will not fail class as long as he is showing up and doing his best.”

Have you seen the funny videos where husbands and wives text each other, but you get to see the various things they’d like to text before they are deleted and something more appropriate gets sent?

Yeah.

“Damn skippy he’s not going to fail…”

“Do you even know what fight-or-flight is?…”

“That’s right – YOU’VE been unsuccessful…”

“HE HATES SCHOOL BECAUSE OF YOU…”

“Do you even have a working definition of autism in your tiny little brain?…”

Nope. Nope. Nope. Can’t send any of that.

That’s why my fingers are itching. She’s gonna be my kid’s teacher for another 3 years and 22 days.

Not gonna reply.

Heaven help me.

Planning for Parents

I know I’ve talked a bit here about planning. It’s become a bit trendy nowadays, but I have needed and used a planner since my undergrad days, with rehearsals scheduled thither and yon, and assignments due; as my husband says, “people to see, things to do, and dogs to scratch!”

That said, figuring out how to organize all the parts of my life – it’s still a challenge. I’ve been bullet journalling since November of 2015, and found that it really works for me. I’m much more able to keep track of when things are due, upcoming events, and even tracking how often I do x, y, or z, which can come in very handy when I’m, say, working on a goal to read more, or exercise more, or be a better human being.

Recently, I’ve decided to track my moods, as well as the moods of those in my household, as their moods have an effect on my mood (as I’m sure you’ve experienced), and also because I’m getting to that age where moodiness is part and parcel of being a woman and all of the lovely things we go through that bewilder the men in our lives. I realized tracking “moods” would be an excellent thing to do for The Boy, and would help us spot some triggers. The more I thought about it, the more I liked the idea of setting up a “home base” journal for The Boy: notes from meetings, school schedules, records of emails from him (a strategy he uses to regulate when he is upset at school), “hang-out” dates, progress on our Independence Challenge, and plans for the future. Now that we are tracking work and volunteer hours for his high school program, this journal will be perfect for that, too.

Some planning friends suggested that, ideally, The Boy would do this for himself, to which I replied that just getting him to do homework was like pulling teeth, but I think I can find some common ground by letting him know I’m doing it, and allowing him to see, add or change things as he feels the need.

I found this excellent resource for autism parents of any age that would like to do something similar over at andnextcomesl.com – a site that’s new to me, but looks like a bevy of great resources.

When I get it set up and operational, I’ll make sure to come back and share what’s working, what’s not, and how it’s helping me be a better parent (I hope!) 🙂

 

Reasons Why & Moving Forward

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Why haven’t I been posting?

At first it was because I was working hard on my novel, because writing is my thing – the thing you would do if you won the lottery and could do anything you wanted? I know, counterintuitive that I stopped writing to pursue writing, but time, man. There just isn’t any when you work 9 to 5.

Then it was the election. I shook with fear as the results rolled in, and my fears were not unfounded. This country is really going in the wrong direction (to put it much too mildly), and this election will have direct, negative impacts on my family, the most important of which are threats to The Boy’s future, and the safety nets that are supposed to be there for him.

And then the horror that is second semester, freshman year tiptoed up behind us, tapped us on the shoulder, and whispered, “Surprise!”

I’ve said before that we have been quite lucky since The Boy was born. We’ve had many good teachers, and wonderful members of our tribe support him in such a way that even though he has his moments, we have not experienced anything “severe.” Until now. And I’ve hesitated to write about it, not because I want you all to believe we live in some fantasy land of “easy-autism”, but because I didn’t want to invade The Boy’s privacy. I know I wouldn’t like it much if my mom had a blog and told the world about all of my problems.

So we’re struggling. I’m struggling. Mostly underneath the surface – we manage pretty well most days. But there are some days where my fears and anxiety about what is happening with him (and his fears and anxiety in general) make it difficult to function. It can be paralyzing.

In honor of this month of Autism Focus, I’m coming back. And I’m going to share with you what we’re going through as best I can without oversharing.

We still have beautiful moments. Yesterday, The Man was putting some pavers down in our yard between our new porch and the driveway, and I watched The Boy fill a wheelbarrow with sand, push it across the lawn and dump it like he’d been doing it for years.

And then this morning, he rampaged through the school office, tearing two plants to pieces, pushing books off a table, and overturning a chair.

This is autism. How do I deal with it?
Simple. I Just Do.

Power, Peers, and a Sad Evening: Part II

I met with the high school principal, The Boy’s special education teacher, and the band director last Friday. It was their last day before break, and it was apparent the principal wanted to clear her plate before she left for two weeks. She explained that they take any hint of bullying very seriously, and she wanted to speak with me right away without delaying the conversation two weeks. Potato, pot-ah-toh.

Let me preface this by saying it was not an adversarial conversation. The principal and I did most of the talking, and we understood each other to a great extent. But, she lost me when she could see both sides of the issue. I bit my tongue, let her finish her thought, and promptly explained that I used to be a band director for a living and that behavior was never, ever acceptable. You don’t touch other people’s instruments. She didn’t disagree.

She felt it wasn’t malicious, and therefore it wasn’t bullying but an extremely poor choice. The kids involved felt The Boy was playing wrong notes, and that they needed to apparently stop him from doing so. She said she questioned them on that when she spoke to them, asking who had given them the authority to do that. They couldn’t answer. They were very remorseful, she said.

We talked more about whether or not The Boy is included in the band class, and in the school as a whole. She said she thought I saw different things at home than they did in school. “He has a group of people that he hugs and gives high fives to every day,” she said. “I know, but he doesn’t know the name of the kid he sits next to every day in band,” I said. They went back and forth between trying to assure me that no one has negative feelings toward him, and highlighting how he keeps to himself and insists during sectionals that he knows the material. She admitted that one of the students she spoke with about the incident “guessed” that The Boy was autistic because as he explained it, “I don’t know anything about autism, so that must be what he has.”

Ugh.

They continued to prove my point while it continued to go over their heads. She insisted that they would have done the same to any other students who might have been playing wrong notes, and I knew that was preventative defense against further action from me. Because that is a load of horseshit, if you’ll excuse my language. They know my son doesn’t have the verbal agility to defend himself or get the attention of the teacher, or even explain what happened after the fact. I only found out because a friend’s kid watched it go down. They took advantage of him precisely because of his autism. If this wasn’t bullying, it was a shocking display of the bias that exists in the school culture that students with disabilities are “less than,” and that excluding others from participating will get you a stern talking to from the principal and that’s it, because you didn’t mean any harm, and are “good kids.”

Before the meeting ended, as it was clear the principal was ready to get to her vacation, I requested they investigate peer to peer programs and seriously consider implementing something so that a “poor choice” like this wouldn’t even enter their minds in the future. I got some vague promises to look into it, and the meeting was over.

But it’s not over.

I’ve already drafted a follow up email to be sent with my further reflections on the incident and how it was handled. And I will also be following up with the various and sundry promises made. I can be a magnificent thorn when I want to be.

I’ll keep you posted.

Facing Reality

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The Boy is 14, and will be 15 in two months. Old enough to take driver’s training. I don’t think there’s much out there that he would like to learn more than how to drive for real. He “practices” in the passenger seat often, rides the riding lawnmower without assistance, has driven go karts, and in general very much looks forward to the day when he can drive his own car. But will he?

I’ve talked briefly to him a few times about how his high school track will work out, how he will get some work skills, and concentrate on learning how to become an employee. But he still wants to be a band director. I think he still wants to go to college. And I know that in the strictest sense, he will not go to college as he envisions it.

He has dreamed about getting a blue Chevy Sonic to drive when he gets his license, but I had to break it to him the other day that it wasn’t going to happen, and that he needed to start saving if he wanted a car at all. A new car of his choice is just not in the cards.

When your kiddos are little, this all seems so far away, and the last thing you want to do is limit their dreams. But when it comes time to face reality, then what?

These are the things that keep me up at night as a mom to a teenage boy on the spectrum. It may not be all that different from being a mom to a neurotypical teenager, except that reality sometimes doesn’t make sense to a logical, autistic mind.

A Perfect Storm

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Yesterday, The Boy left his bag on the bus. Not his backpack, like he originally tried to tell Grammy when he arrived to their house. His “electronics bag” which he carries everyday and contains his iPad, his 3DS, his games, and all of his chargers. Cha-ching.

As soon as I arrived (after 5 o’clock), and determined what was really missing, I contacted The Boy’s teacher, who had contacted the vice principal who deals with transportation. He emailed back to say he would look into it in the morning. *sigh*

Remarkably, The Boy was not overly agitated or anxious, although when his laptop finally ran out of juice around bedtime (because his charger was in his bag left on the bus), he let loose a few loud and angry epithets, and I had to snuggle up next to him to calm him enough to sleep.

I also found out yesterday that his special ed teacher would be out today due to dentist appointments that she had forgotten about for herself and her two children. Ok. We’ll manage, I told her.

And then I received two texts from her classes (math and English) reminding us to sign and return a movie permission slip for today. Guess what? No permission slip was in his backpack. So who do I email? Weren’t we doing this dance a couple of weeks ago?

Finally, after emailing his elective teacher to explain that we would need one more night for a project, he emailed back to say it was no problem (yay!), and to explain that The Boy had a quiz today (wha?).

So today, The Boy has an absent teacher (check), a missing electronics bag (check), no permission slip (check), and a quiz (check). Everything will be fine, right?

Did I mention that we might get hit with Hurricane Matthew this weekend, and everyone is buying French Toast supplies (milk, bread), water, and generators at an alarming rate?

Everything will be just fine…

Back to School

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The blog has been quiet this week, and I’m sorry for that. It’s a busy time of year, and I’m sure that most of you are experiencing some of what we are, too.

Most autism households are experiencing anxiety and behaviors right about now, too. Mama Fry from Autism with a Side of Fries is experiencing this in spades right now, and I read her posts and think, “Is there any doubt that our kiddos need ESY?” Come IEP time, I wish we could show the team video of what we experience at home these first few weeks of school. At our house, it includes perseveration about fire alarms and drills, fixation on the time the bus leaves school, and the fact that his middle school email address no longer works. There’s a lot of pacing, and more than a few angry outbursts. And in our case, lots of emails from The Boy at school to me at work, explaining his plans to fix all of his imaginary vehicles because they have all broken down.

In a word, anxiety.

So that when the district insists that he doesn’t qualify for a program to provide him continuity, we can say, “But this is what happens after break. Autistic kids need consistency, and if you offered year-round school, we’d be the first to sign up.”

Good luck to all of you tribe members. It’s a tough time of year.

 

Perspective & Paradigms

I had dinner with a new friend the other night. She has been a friend to me in several ways this year, but we actually met for the first time that night. She is a mom to three boys between the ages of 13 and 18. And they are all neurotypical.

We talked about the apparent lack of student support for The Boy and his friend in the marching band. She carefully and respectfully defended kids like her son who are more than happy to interact with a peer on the spectrum at home, but not necessarily at school, where peer pressure can be a hard thing for any kid to overcome. She said in middle school, everyone is trying to fit in, and in high school, everyone is trying to get out.

After 17 years teaching at both levels, I get that.

But to my ears, it rang as old-fashioned as the tired phrase, “Boys will be boys.”

Of course, I understand and fully believe how difficult it can be for middle school-aged children to look beyond themselves to see others who need help. It’s Child Psychology 101 – at that age, as you may remember, they see themselves as the center of their own universe. Remember thinking everyone would laugh at you for that zit on the end of your nose, or the bad haircut, or the crazy sweater your aunt bought you? But they really didn’t (unless they were mean kids, anyway), because they were too busy worrying about their own zits, and haircuts, and sweaters. Indeed, some people never grow out of this psychological stage, but that’s another post.

Most of us do grow up, and realize it’s in the caring for others that we find ourselves.

And what we need to realize is that our kids need assistance in growing up and out of this psychological stage. Yes, it’s normal, but we don’t want them to stay there. Just as we taught them to walk and tie their shoes, we need to teach them to be their own person. We as parents need to help them understand that “different” is not inherently bad, and we need to expose them to “different”, whether it be people, foods, cultures, or ideologies. Seeing and learning about differences is how we figure out and find peace with ourselves. What a gift it is to learn that we are not alone in our weirdness! Who wouldn’t want to help their children find that awareness??

Yes, it’s hard for typical middle schoolers to break out of their comfort zone and befriend someone perceived as different in front of other middle schoolers. But what a teachable moment, rife with lessons! Pick up the baton, parents, and show them the way.

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He’s Excited. I’m Scared.

We got The Boy’s schedule finally, and it was slightly different than expected, with no core class second semester and a passel of scary-sounding electives like “Principles of Business & Finance.” I emailed his new teacher with my concerns, and she said those are the career and technical education courses they take as part of the Occupational Course of Study, and that the special ed teachers work closely with those teachers to make sure everything is modified. Seniors get first pick, so there’s not much left for freshman when they schedule them.

Ok. But if you have a 9th grader who still can’t multiply and divide independently?

And the lack of core classes was due to the only male PE class being offered at the same time during second semester, and he can just take Biology when it’s offered again, either sophomore or junior year.

I look at this schedule with these long-titled classes that last an hour and a half, and I know there will be no parapro, and I start to get a little queasy with all the what-ifs racing through my brain.IMG_5643

My constant refrain seems to be “How does this work?” And I have to let go. I have to trust that it will be fine. I have to give this new set of teachers a chance to prove they know what they are doing and that they are professionals.

And while I do that, I am preparing my own “curriculum” of supplementary stuff to help him find some meaning in his day, just in case “Sports & Entertainment Marketing” isn’t quite up his alley. Like maybe a coding workshop, and some time spent feeding some animals at the wildlife shelter.

“Thinking will not overcome fear but action will.” ~ W. Clement Stone