It’s Been a Struggle – Update

Hey, there, friends. Long time no write on my part. I’m sorry about that. Between the election, NaNoWriMo, and some other stuff going on in our lives, my head has been swimming. I did pre-write some posts and schedule them, but not as many as I would have liked, so I’m checking in with you all today.

  • I woke up at about 3am this morning with the weight of the world on my mind. This has happened a lot since November 9. As I said in my last post, I’m very worried about The Boy’s future, more than I have ever been. His medical coverage is at risk, and that would affect us emotionally and financially. I don’t expect any progress at the national level in terms of increased programs for adults on the spectrum, either. Maybe this do-nothing congress that has been virtually re-elected will surprise me, but I doubt it will be in a good way.
  • The Boy has been struggling with some violence during his meltdowns this year, and I am investigating how we can best help him through this. We may be switching doctor’s offices, we may be switching medications (big yikes), and we may be looking into some therapy for him. It depends on what his insurance will cover. But he needs some help dealing with his anger (thanks a lot, puberty), and I’m at the bottom of my toolbox with nothing left.
  • I get my first Thanksgiving mini-vacation this year since 2012. Every other year in between, I had to work on some portion of the days surrounding the holiday. Starting tomorrow at lunchtime, I am off until Monday, and man,will that feel weird. Good weird, though.🙂
  • Then The Boy’s birthday is right around the corner. He’ll be 15. There goes my head, swimming again…
  • And the ex reached out post-election with an eloquent text saying he knew he had neglected his son and wanted to be a regular part in his life, promising to call every Sunday. That lasted exactly one Sunday, but I suppose his heart is in the right place. The Boy will be heading to his dad’s for Christmas, and I will miss him desperately.

So, my head continues to swim, which is better than sinking, I guess. I wanted to check in with you folks. It seems like it has been forever.

I wish you all a wonderful Thanksgiving.❤

Musical Tastes & Control of the Radio

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The Boy has been showing an increased interest in the music playing on the radio lately, which I think is pretty neat. When he was much younger, I put some tunes on an old iPod shuffle I had for him, and hadn’t given it much thought after that, as he seemed to lose interest and move on to other things.

Now, he actively participates while in the car, sometimes hurrying to change the channel if he hears a group that he knows one of us doesn’t like, or he knows there is a swear word in it (thankyouverymuch, Satellite Radio). He will even bop his head along in time to the music. I’ve had to talk to him a bit about the unspoken rule that the driver gets to decide what is on the radio, which he doesn’t entirely understand or agree with, but he’s fairly respectful about it, anyway.

There are days when he even hops into my car, pushes the “Aux” button and hooks his iPad up to my radio, pretending that the radio station is playing a pre-selected song of his choosing, usually something by Daughtry (it seems he really liked listening to that group on that old iPod shuffle – go figure). He will even pretend to be the voice of the DJ playing the song.

What’s even cooler is that he is really listening and starting to have some favorites. He enjoys U2 and Mumford & Sons the most, along with Green Day (because his school band played a tune of theirs in 7th grade), and Daughtry (ha!), and turns up the radio accordingly. Having favorites is kind of a big deal in and of itself, because he has tended to be so attached to inanimate objects and things, he rarely picks a favorite anything, afraid he’ll hurt the other thing’s feelings… And remember when I told you I suspected he had perfect pitch? Yep, he has amazing auditory skills.

And then yesterday, he blew me away. We were listening to one of his pre-selected tunes, “21 Guns” by Green Day, and immediately remarked that this song reminded him of a song called “Apartment 4” that we used to listen to when he was a child by They Might Be Giants, as well as “Beverly Hills” by Weezer. If you listen to those links I’ve added for you (be careful of the Weezer link – couldn’t find a link to the song without the video!), you will have to admit that he is a discerning listener, and I’m pretty proud of him for that.

All of this makes me wish he could use these skills someday, but that may not be in the cards for him. In fact, there are very few people who get to listen to music and analyze it for a living. Truth be told, if it turns into a hobby, it is a very cool one to have. If he starts collecting records and asks for a record player for Christmas, I’ll let you know😉

Responsibility

I’m pretty lucky. The Boy generally does what I ask him to do. Unless, of course, he is in the middle of something. And generally, if I set a timer for five minutes or so, he will usually do it then.

Last Sunday, I decided that he should help me prep his lunched for the week. Pretty simple tasks involved, like counting 12 crackers and 12 pepperonis to put into snack bags. The cheese is a bit more complicated, involving a knife and cutting, but I figured he could help me with the bulk of it. I gave him five minutes, and he came to help, doing what I asked. My goal is to get him to the point where he can do this himself every Sunday, because why not?


It took awhile, mostly because he is so careful when he does tasks like this. It would have been much easier for me to do it myself, but then, I won’t always be there, will I?

Every time we do something like this, I give myself an internal high five, and The Man and I look at each other and say, “He needs to do more of this.”

I’m off to brainstorm more ways he can “help,” so we can add them bit by bit…

CBT & Flexible Thinking

As The Boy gets older, his anxiety becomes a bigger and bigger challenge. Since elementary school, he has had a preoccupation with absences at school. Not only his (he can tell you what date he had a dentist appointment and missed a day of school in second grade), but those of other students and teachers, as well. This preoccupation has become so intense over the past few years, that it has induced some anxiety attacks and meltdowns, interfering with his ability to function at school.

After a little research, Cognitive Behavioral Therapy seemed to be the way to go, and I went looking to see if there might be some therapeutic activities I could foster at home to help him become more flexible.

We are trying a visual weekly calendar (not monthly so it’s not too overwhelming), so he can see what is planned for the week. In addition, we have a post-it note where unexpected events are listed and crossed off upon completion. This is so that he has a regular spot to which he can refer to see and reassure himself about the change. And because these “unexpected” events occur quite often, hopefully he will begin to see that life goes on when these things happen, and as we say around here, we just have to “roll with it.”

I tend to forget how powerful visual images are for The Boy. I’ll keep you posted on how it goes!

 

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…

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.

A Few Changes

Like I tell The Boy, change isn’t necessarily bad, but it is inevitable.

I’ve done lots of thinking over the past couple of weeks about this blog – you may have noticed my “radio-silence”. SimpleIJustDo has provided me a great place to share and vent, a small community of support, and lots of self-reflection. As The Boy gets older, I am starting to feel like he is becoming the steward of his own story, and although this has always been a place for me to write about me and my experience being a mom to him (and never meant to replace his own story), I feel like I need to take a step back.

Let me be clear: This blog isn’t going anywhere. I will continue blogging.

But, I’m going to concentrate on quality over quantity. I need to balance my need to share and vent, and The Boy’s right to privacy and self-advocacy. I may post less and try to interact more via social media (if you aren’t following on Facebook or twitter, now might be a good time to look me up).

This will also allow me a little bit more time to focus on my long-term writing goals, too, which involves novel-writing aspirations (wish me luck!).

I hope you’ll hang on and bear with me through this adjustment period. We still have lots to share. But we may do it in a little bit different forum or format. As always, thank you for showing interest in our story. I’m still amazed at how far across the globe my voice can go!

Much Love,

~Annie

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Not goodbye. We’ll see you soon!

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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