Time for the Truth

It’s common in the autism community to hear that as our kiddos get older, the challenges just change. They’re no more difficult or less difficult to handle, they are just different. That’s what you hear, and it’s supposed to be reassuring, I guess.

And maybe that’s the truth for some people. Maybe even most.

But I can’t say that’s been our experience. Things are harder now than they’ve ever been.

And maybe that’s not all autism’s fault. I’m sure the fact that I keep marrying losers who leave doesn’t help, and moving to a state that has substandard resources and a less than stellar educational system contributed. But at the end of the day, autism itself isn’t what has made things so difficult. It’s the anxiety.

Anxiety often shows up on the coattails of puberty, waving at you with a smug look on its face, saying, “I’m moving in and taking over now. Take a seat.” It shoves you down on the couch, flexes its muscles and commences to shattering and dismantling progress you’ve made, trust you’ve built, and your sense of safety.

The Boy is on medication for anxiety in addition to the meds he’s taken for a long time to help him focus at school. The medication helps. Most of the time. But there are times when the anxiety is too strong, and it combines with the confusion caused by being wired differently, and the roller coaster ride sets off. Every three minutes, a wild mood swing, sometimes accompanied by erratic behavior and lashing out, physically and verbally. And you just have to hang on for dear life until it ends, which is sometimes hours, sometimes days. And by “hang on,” I mean worry as hard as you’ve ever worried about your kiddo before.

And when things have calmed down, you find that you are a special kind of tired you’ve never been before. Physically and emotionally, a bone-weary tired that makes you fear going home because there might be a turnstile at the door, with another roller coaster ride waiting for you.

I’ve heard in the autism community that the anxiety lessens as they get older. And maybe it does for some people, maybe even most.

But what if it doesn’t for us?

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When a Community Isn’t

The Boy had a pre-contest concert this past week. And prior to that concert, he was behaving oddly, suddenly announcing that the band sounded terrible and that he didn’t want to perform. I’m still not quite certain what instigated this, but I think it stems from the change in band directors this year, and all of the changes he’s had to deal with recently. He had purchased a conducting baton online and when it came, it lasted about a day before breaking. I attempted to fix it, but the morning of the concert, it broke again, in two places. He almost didn’t get out of the car at school.

Suffice it to say, it was a perfect storm for a meltdown, and I wasn’t sure I wanted to put him in the high-pressure situation of a concert.

He went back and forth all day, and finally, ten minutes before we needed to leave to get him there on time, he decided that he would get dressed and go. We went, he performed, and all was fine. My nerves were shot by that point, but as I sat with another autism mom whose kiddos are in the band, I was breathing a big sigh of relief. The band was still onstage, being clinicked by a band director from a neighboring school. The Boy was wandering backstage, occasionally making an appearance in the wings with a new baton a friend had purchased and brought to the school for him (another long story!), conducting as the band was clinicked.

And then, another parent approached me.

It was a mom I knew by sight of a girl in The Boy’s grade. I had chaperoned their 8th grade band trip, as her husband had. I knew they also had an adult son on the spectrum, and they often say hello at band events. She had a book in her hand and began to tell me how wonderful it was, that she had just finished reading it, and had I ever considered a gluten-free diet for The Boy?

I groaned, inwardly.

No, we hadn’t tried it.  Yes, I was aware it helped many kids, but not all, and yes, I had considered it many years ago but decided against it largely because the only things my kid would eat were pizza and grilled cheese, and if I took those away he would starve.

She looked at me with some consternation and said that she would try anything if there was any chance it would help.

Well, thankyouverymuch.

She spent another few minutes urging me to look up the author and read the book before making her goodbyes and wandering back to her seat to wait for the band to be released. I turned to my other friend, explained what the conversation had been about, and we shared a bit of a laugh, as her son on the spectrum has a bit of a love affair with sugar and junk food.

If we can’t get patience, understanding, and acceptance from each other, how do we expect to get it from the rest of the world? At the end of a long, anxiety-ridden day like I had had, the last thing I needed was to have another autism parent try to get into a polarizing discussion about treatment options and then judge me for not making the same choices for my son and my family.

There’s one thing an autism parent doesn’t lack and that’s a sense of guilt for not doing enough or being enough. It doesn’t matter that it doesn’t make sense, the feeling is there and never quite goes away. Let’s not pile it on for each other, ok? Can we at least promise to do that? Within our own community? Can we?

Fairy Tales

Some of you may have seen my FaceBook post this past weekend where I mentioned that I was going out of town by myself, ostensibly for a self-imposed writing retreat. That was the major impetus behind it, but the not-too-distant secondary reason was to dispel some ghosts.

When the IM (henceforth known as the Invisible Man – props to Jim for the suggestion!) was a part of our family unit, we would often travel on day trips to Wilmington, NC, about an hour and a half from our home. It’s a city, so it allowed us to escape from the small-town mindset that pervades the area where we live. Diverse people live there, progressive people live there, and there are things to DO. We would park our car on Ann Street, walk down Water Street along the Cape Fear River, go to the Cotton Exchange (which is a maze of shops and eateries in a historic building), stop at one of two or three regular places to eat, head back up Front Street (the main drag), and hop in our car and go home. It was always enjoyable, a fun way to spend the day. The Boy loves walking, and would often try to get us to walk further, but me being 43 and sedentary, and the IM being in his 60s, we would bribe him with ice cream because the walking we had already done was plenty.

Then, when the IM left last year, it felt like I couldn’t enjoy Wilmington anymore because of all the memories. To not be able to enjoy something that you love because of another person’s actions… well, it didn’t seem fair, on top of everything else. I didn’t want to be driven out of one of the only (progressive, cultured) havens left to me here. So I thought I’d kill two birds with one stone – get away to write, and get back to Wilmington to reclaim it as my own.

It was an amazing experience.

The Boy pointed out to me before I left that the last time I had been away from him overnight by myself was four years ago, while attending a work conference, which only reinforced the need to do this.  And need it, I did. I thought about myself as a teenager, and what I thought life was about then. I would have told you life was about having a career that you love, yes, but also about finding someone to love, get married, and have kids. My twenty-something self would have said the same, as would my 33-year-old self.

I wish I had done a weekend like this sometime in that span, the younger, the better. I wish the possibility of remaining single had been an option I actually considered. I wish our cultural norms didn’t rely so heavily on the tradition of marriage, of “Mr. Right,” of our wholeness being dependent on finding someone else to complement us.

We are enough.

We do our girls a disservice by not allowing them to see themselves as the source of their own happiness, by expecting marriage (and children), and by painting singleness as something that needs to be temporary or remedied rather than a perfectly valid and healthy way of being. EVERY girl should live on her own for a bit, do things by herself, make her own money and manage it, be the source of her own efficacy. If only so she knows that happiness isn’t dependent upon an attachment to another person.

I was always taught to be independent, and I still saw marriage as the goal for such a long period in my life. I wonder how my life would have been different if our society had given singleness a spot at the table, too.

(Caveat: this is not regret. Life is too short. I have an amazing son I wouldn’t give up for the world, and I wouldn’t have him without my first marriage. I’m still working out what gifts I may have received from the second marriage, but I know they’re there.)

I’ll hop down off my soapbox, but I encourage you, ALL of you (yes, you GUYS, too), to travel somewhere alone for a weekend. Spend some time with yourself. Entertain yourself, do what YOU want, and go eat somewhere alone. I guarantee you will enjoy yourself.

 

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.

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

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

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

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

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!) 🙂