Communication Skills

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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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On a Different Page

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One of the downsides to living where we live is that it is difficult to find some kinds of medical care for The Boy. Medicaid covers quite a bit, and I am so, so grateful. But not all providers take Medicaid. There is basically one dentist we can go to, who is awesome – Thank heavens! And I have found exactly two counselors for therapy, both a bit of a drive from home.

Since one of The Boy’s major anxieties deals with absences from school (usually other students and teachers, because he never misses school), we eventually settled with the one who offered evening appointments, because missing school when you are anxious about absences is not an option.

The problem is, this counselor claims to have experience with kids on the spectrum, but I’m beginning to have my doubts. She told me last night that her brother has ASD, and I immediately thought of my ex-husband who knew he would be a great dad because his sister had 10 kids (at the time)… correlation not causation.

Red flag #1: She used the word “coddle” when asking if I could have “put my foot down” in the following situation. Grammy, Poppy, The Boy and I were on a long weekend getaway. Our hotel had spotty WiFi that The Boy had difficulty accessing at all. A meltdown was brewing, so we checked out and went to a different hotel. According to the counselor, she thought that I was “coddling” The Boy, and wondered what would have happened if I had “put my foot down.” I looked at her and said, “Most assuredly a meltdown that could have included a violent rage, possibly involving other patrons and property of the hotel.” No WiFi = not an option, and I don’t think there would be too many autism families who would disagree with me.

Red flag #2: She continues to ask open-ended questions. For example, last night, she was pulling cards from a “thoughts-and-feelings” game that you would only find in a counseling office, and gave one to The Boy who was reading them aloud. “What is the worst thing that ever happened to you?” I get that this is commonplace in counseling. Treating patients with autism may require a little more finesse and effort on the part of the counselor to get at what the kid is thinking without him parroting back whatever you said – I’m sure it can be done. Asking him to answer that question? SMH

There have been more, but I think you catch my drift with these two examples. I’ve decided to continue with her because A) there is literally no one else, and B) she doesn’t appear to be doing him any harm, yet. He likes her, and I think he enjoys having another outlet. But I’ll be monitoring the situation closely. She was headed in a very wrong direction regarding something else last night, and if I begin to feel uncomfortable, I will pull him, and we will continue our search anew, possibly driving further to see someone with weekend appointments if such a unicorn exists.

Suffice it to say that access does not equate with quality care, and I wish for the sake of our kids that we Americans cared more.

Change Begins at the End of Your Comfort Zone

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We are now multi-generational household! Aren’t WE trendy!

Grammy, Poppy, The Boy and I are all living under the same roof now, along with two disgruntled felines, and lots and lots of stuff that either has to find a home, or find its way to the dump. Change is always difficult, especially the older we get, and also especially for those on the spectrum. So while there is lots to be thankful for here (no chance to be lonely in this small house!), there is also adjustment – poor Grammy doesn’t really have a space to her own, and we’re still bumbling our way through setting up boundaries and routines.

But this is all in preparation for the long game. This will save us money, time, gas, and provide a little more support to The Boy and I. It’s also going to help us move toward our next step – something I’ll share more about when we know more. This split has been harder on me in many ways than my first divorce. That one was expected, and a bit of a relief. This one was neither. I didn’t want this, so working through the stages of grief will take more time, especially since there wasn’t really any closure.

The Boy, too, is still struggling, even though having grandparents here is mostly a good thing for him. Change is change in his eyes, and it’s unsettling. But the nightly upsets have decreased, and he gets more time to do what he likes after school because he gets dropped off at home now, which I think he likes.

I’ll post about the normal autism-related stuff we’re going through soon. Can you believe he’s a month away from turning 16? I sure can’t.

Cheers to all of you for hanging in there with us!

 

Back to Single Motherhood

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My marriage has ended. The Man finally moved out on Monday, and will now need a new nickname, although I am not supposed to write about him anywhere. It was unexpected, and there was no reason given. It made for a hellish summer. And that’s all I’ll say about that. Now it’s over, and we are looking forward to new habits, ways of being, and opportunities.

It is good (and also sad) that I have experience to fall back on and help carry me through. I’m watching The Boy like a hawk, and have also had him in counseling for other issues this summer, and I think it helps him to have another outlet. There has been much upheaval in his world, both at home and at school, and there is more to come. It’s so hard to be a teenager. And then add autism. And then add people leaving you unexpectedly (your stepdad, band director, favorite assistant principal…). Through all this, he’s been handling everything like a pro. LIKE A PRO. He had one major meltdown this summer. ONE. His transition back to school has been smooth as silk. He amazes me every day, and I am so thankful for him. So thankful.

I am getting back into my writing, and it feels amazing. I’m preparing for NaNoWriMo this November, and have been selected as a Municipal Liaison for my region (which means I help coordinate events and support for others participating in NaNoWriMo). I’m also taking a writing course offered to NaNoWriMo participants through Wesleyan University in Connecticut (online), and it has been an awesome experience and quite validating.

As always, my closest friends, and my incredible parents have been my rock and have seen me through to the other side. Thank you all for being so patient. Onward and Upward, or as my favorite Doctor (#10) from Doctor Who says, “Allons-y!”

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The Boy and I at a bowling party hosted by our local Autism Society Chapter this summer

Tracking

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A big component of my plan to start a planner of sorts for The Boy is tracking. I would like to track several things like his diet, his moods, and the-results-of-his-digestive-system-if-you-know-what-I-mean.

In fact, I’ve already begun tracking something that has given me insights. If you’ve spent any time on this blog in the last couple of years, you know that emailing me has become a calming strategy when his anxiety gets the best of him at school. It came from a bit of self-advocacy, and it has worked well. The number of emails I get in a day also correlates to the “quality” of the day: more emails means more anxiety and less learning, fewer emails means less anxiety and more learning. It’s a loose correlation, but it’s there.

In prep for our meeting with a new therapist tomorrow, I went back through my emails since the beginning of the school year and did a simple tally, putting it in calendar form. Just that simple act allowed me to see…

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Whoa. Mondays have been a bit of a problem! I would do well to work more at home on Sundays, preparing him for the transition back to school, it seems. Wednesdays seem pretty chill, and then the anxiety comes back on Fridays, I’m guessing when parents pull his friends out of school for the weekend… Wish I had done this sooner, but at least there is benefit in the tracking, and I have high hopes for my planner.

Biting My Tongue

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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

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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!) 🙂

 

Why I Love That The Boy Plays Video Games

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This past weekend, The Man and I took The Boy to Myrtle Beach for a mini vacation. Overnight, to be exact. We hadn’t been in a long while, and there’s just something about it that we adore. Grammy and Poppy had already made plans to go down for a long weekend, so we hopped in the car on Saturday morning and were on our way.

As The Boy has grown, he has developed a deep and abiding love for Myrtle Beach because of the overabundance of arcades. He has found his favorite games in several arcades, and indeed, we spent a good portion of our time Saturday following  him around and playing a little ourselves.

One of his absolute favorites is Galaga, a throwback to the 80s. And I love watching him play. You may think it a bit odd, that one of the things he does that makes me proudest is play an old video game, but here’s why: he wins.

He does well, he has developed his own insanely smart strategies that I’ve never seen anybody use in that game or elsewhere, and he often gets his name on the high score board as a result. And if he doesn’t, he’s completely ok with it, and has no real sense of failure.

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What can we take from this? Predictability helps him learn and develop strategies. The norms of video games (that you learn by doing, over and over again) allow him to learn and develop at his own pace. And by giving him just those two pieces, he has a high level of success.

One of the most-shared autism memes goes something like, “I wouldn’t change you for the world, but I would change the world for you.” We get a lot of resistance sometimes when we ask for modifications and accommodations. But two simple structures in place in that game are all it took for The Boy to become an expert, devising complex strategies and showing actual results. This is why we fight to get what he needs.

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.

Soon, Friends

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I know it’s been quiet around here. I’m sorry for not posting for so long. But as many parents, and especially special needs parents will tell you, there’s only so much of me to go around. I’m desperately trying to finish the first draft of the novel I began in November, and I am mere paragraphs away. Then I can allow myself to get back to my regular routine of writing in multiple spaces for multiple purposes.

 

I have much to share if you’ll bear with me a little longer! ❤