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?

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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.

 

Soon, Friends

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! ❤

What Do I Do?

There are times when the various people in The Boy’s life reach the end of their list of strategies, and pull back, saying, “I didn’t know what to do.”

It’s ok.

I’m his mom, and I reach that point quite a bit.

When Grammy reached this point the other day, I thought a bit about exactly what it is that I do when The Boy is heading toward a meltdown.

  1. Try to get him seated and then sit myself.
  2. Listen to what is making him upset.
  3. Acknowledge his feelings (“That is upsetting. I’m sorry.”)
  4. Offer to help – this usually is “not possible,” according to The Boy.
  5. Try to redirect the conversation from THIS HAPPENED to WHAT WE WILL DO ABOUT IT.
  6. Offer suggestions. If these are rebuffed, ask “What can we do?”
  7. Repeat 2-6 until he is calm enough to come up with a plan moving forward. It may make no sense. It may be fantastical or improbable. But looking forward allows him to move on from what was upsetting him.

This can take some time, or no time at all. I’ve found that #2 is the most important, and that if you do this process enough, it becomes easier and easier for him to process.

This is what we do. It may not work for you – every kid with autism is different. It has worked for us, and helps build our relationship each time.

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. ❤

Broken

I woke up early today to get some more work done on my Nano novel, as I have been doing every day since November 1. But I can’t. No, I really can’t.

I stepped into my office and nearly retched. I saw one headline and began to sob. I knew the result in the wee hours, but the headline read, “What do we tell the children?”

My husband said I should stay home from work. He’s probably wishing I had stayed in bed so we could hold each other and put off starting this day a little longer.

But I didn’t. I got up, put my yoga pants on and came in my office to write. I took a quick detour to TheBoy’s room and held him tight for a moment, and now I’ve started my day.

I won’t miss work today, even thought we have suffered two sleepless nights and I still feel like I could vomit right here on the keyboard. I’ll get The Boy ready for school, and we will go about our normal routine. I will pull my loved ones around me like a cloak, and we will love each other, work hard, and play, just as we have.

I will also make phone calls and write letters until my local and state politicians know my name. Just because there is an R next to their name doesn’t mean they don’t work for me. And we have work to do.

Now that guy at the top? He doesn’t work for anybody. Don’t be fooled. Let’s just hope they gave him fake codes.

We have to sit tight and hunker down for three and a half years. And then we’ll have to make one hell of a noise if there’s anything left to fight for.

What do we tell the children? We tell them that sometimes even adults make mistakes, and that just like when you break a plate, saying you’re sorry doesn’t fix it, our country is broken right now. But when things get broken, we try to fix them first before throwing them away. And we’ll need their help to do that.

That’s what we tell them.

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 😉

Discussing Divisiveness

If you are in the US, and even worse, in a battleground state, you know that the election coverage, ads, and rhetoric are inescapable. Unfortunately, some of that rhetoric is not appropriate even for my 14 year old to hear.

But he is in high school, and I know he hears about this stuff at school, too. My challenge is to explain to him what’s going on.

I’ve explained recently that I’m a political being. I can’t escape it. I’ve always been interested in social justice, and politically active, even taking the young kiddo canvassing in 2008, when he was just six years old. I also take him with me when I go to vote. It’s an important part of being a US citizen, and I want him to understand that.

I also want him to understand why The Man and I speak about the candidates the way we do, and why we feel the way we feel. It’s harder because I know we are in the minority in our county. In fact, there will probably be very few kids at his school who speak about our candidate with any respect.

And as I explain to The Boy about the importance of being respectful of others’ views, I hesitate. I understand many of the complexities in this cycle, but The Boy does not, and truthfully very few high school students probably do either. Much of what he hears at school will be parroted from what is discussed at dinner tables.

He does not need to respect the view that woman, minorities, immigrants, and the disabled are less-than. He does not need to respect the view that making unwanted advances or physical contact with a girl is just something boys do. In fact, those are things that I am actively teaching him are wrong and dangerous.

So, in these justifiably divisive times, what do I say? I say that it all comes down to being nice. We choose not to support the candidate who says mean things about people. Because that’s not nice. We start there, and work our way to the other stuff. The other stuff that I shouldn’t have to explain to my kid , but now have to because an adult on the national stage, nominated for the most powerful position in the free world modeled incorrectly.

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!

Be Nice

I thought I’d post a reminder about my policies.

Up there, fourth tab over, 3rd bullet point down: “Be nice to each other and to me.”

If you choose to comment here, and leave only negative, disparaging, judgmental comments, they either will not be approved, or they will be deleted. I have no problem with someone disagreeing with me, what I write, or the actions of others about whom I write. But if you can’t be civil, you are not welcome here. Move along.

For now, I have set my comments to only post with approval. I will re-set them to more lenient settings when I am sure the nasty person who prompted this post has, indeed, moved along.

 

Thanks, as always, for your support! 🙂