Waiting

(This post was written in April, but I haven’t published it until now.)

Here I sit, waiting.

The Boy and I are at an amusement park on a two-day band trip. And he is waiting in line by himself, to ride a rollercoaster by himself. And I wait, hoping he understands any directions given to him, and isn’t taken advantage of by others in line. But when I offered to go with him, he declined. He’s a teenager.

No one in the band offered to include The Boy in their group today. No teacher made the effort to ensure he was included, so he just wasn’t. He has to pal around with his mom all day, wondering what the other kids are up to. Not that he really minds, but this isn’t inclusion. This is separate but equal.

I can’t make other kids include him. And when I suggested a peer mentoring group to the school administrators, I was ignored.

So, I wait. And I hope that someday, a peer will take the initiative to befriend my son as s/he would any other person, and include him. Until that day, we make do with what we have, each other. Allowed to come along, but not really a part of the whole.

*ps* He enjoyed the ride and even went on a different ride by himself later.

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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.

When in Doubt

The Boy is now a full-fledged teenager of fifteen years old. As such, he has begun to take extraordinarily long showers, as I’ve heard teenage boys are wont to do. Because The Man pays both the electric and water bills, however, this budding habit has caused a bit of a household rift every other day or so.

“When’s he getting out?”

“I can’t see through the door.”

“He’s been in there too long.”

“What would you like me to do about it?”

Etcetera, etcetera, etcetera… *sigh*

Last night I fell back on one of my key rules of parenting: When in doubt, try bribery.

I got The Boy to agree to a 9:00pm shower time. Just as he was about to go in the bathroom, I said, “Hey, if you can hop out by 9:15, you can get a cookie.”

“Ok!”

I gave him one heads up that he had about a minute, and magically the shower turned off a few moments later. It took him another eight minutes to physically remove himself from the bathroom, but once he did, he went to the fridge, got himself a cookie and smiled like the happy camper he was.

I raised my eyebrows at The Man and smiled, too.

That’s why it’s still one of my key rules of parenting. 😉

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!

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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The Boy, The Teacher

One of The Boy’s areas of intense interests is (and I believe always has been) cars and trucks. He knows an incredible amount about makes and models, when they were produced, and various other trivia. He can even identify cars makes and models at night. How he does it, I’ll never know.

Yesterday, we were at a traffic light, and to engage him in conversation, I remarked on the bright blue car waiting at the red light across the intersection. “It’s a Dodge, I think,” I said.

“Yep,” he said.

“It’s either a Challenger or a Charger. I can never remember which is which,” I said.

“It’s a Charger. You can tell because it has a rounded top. It also has four doors. The Challenger has a square top and two doors.”

I looked at him, amazed. He was teaching me how to differentiate between two car models. It was clear, simple, and he had taken advantage of a teachable moment for me. I sure hope we can figure out something meaningful for him to do post-high school, because he has so much to share with this world. Me included. 🙂

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Negotiations

Yesterday, Grammy and I were texting back and forth regarding strategy to try to get The Boy to take the immunizations. She told me she wasn’t sure she could convince him to go ahead with the three shots he needed. “Bribery?” I suggested. I also let her know we could rescheduled if he just wasn’t ready.

She suggested to The Boy that if he went through with it, she would take him to his favorite place for lunch, a restaurant with pizza and video games called Ioanni’s. His reply was classic, “I’ll do lunch at Ioanni’s, but I’m not doing shots!”

Needless to say that was exactly how it went down, and when I picked him up, he was no calmer about the prospect of shots. He insisted that he was too old, and that he would have to miss school, as he did the last time. In the meantime, he had gone to the bathroom and put a bandaid on his leg to convince me he had indeed already had them done! Then he insisted we get them done on the Friday before Labor Day, as he had done before… In these situations, asking why will only make your brain hurt, so we just roll with it.

 

I told him they may not be open that Friday (I really just wanted him to get them done before school starts), and had already rescheduled him for this Friday – could that be our plan B if they weren’t open the Friday before labor day?

“Can that be our plan C??”

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So many backup plans…

“What would plan B be then, Bud? If they aren’t open on the Friday before Labor Day, when would you feel comfortable going?”

At first he said next Friday, but when I reminded him that he has a marching band show that night, he quickly changed his mind and said this coming Monday. Why? Again, I don’t go there.

I asked him several times if he was sure, and reiterated all of our plans to him a few times last night to make sure he was feeling comfortable about all the options. And this morning I called to reschedule for Monday.

What doesn’t seem rational to us neurotypicals makes perfect sense to him. He was just using reason in his own way. I’m glad we could negotiate a settlement, regardless 😉

Not Enough Hours

Just a quick post to say that it will be a light week, blog-wise. We hope to move into the new house on Saturday, which means we not only need to get the house ready for us to move in (painting window trim, putting up a mailbox, installing closet rods, installing carpet, installing baseboards, and using lots and lots of caulk), we also have to pack up and organize the rental house (and the storage unit), all before Saturday, all (at least for me) in addition to the full time job (busy due to payroll taxes being due on Friday), and feeding and clothing my family…

Not complaining, just seriously leaves little time for writing…

 

Anyway, thanks for your patience and as always, your support. 🙂

What It Means to Be Not-Quite-Verbal

The Boy's self portraitThe Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

Has this Happened to You?

You are at some school or other kid-related function, and a parent begins talking to you as if they know you. She or he prattles on about their child by first name, and your child by first name. But you’ve never met them before in your life.

IMG_4054-0I suspect this is common for those of us with kiddos on the spectrum, at least those of us whose kiddos are not-exactly-verbal. In my experience, The Boy becomes a kid at school that everyone knows, or at least knows of, but because we have limited social interaction with the same students outside of school, I know none of these kids. It is also due to the fact that The Boy is fairly nonverbal about anything that happens at school.  This is why I try to go on at least one field trip per year, so I can put names with faces.

The latest occurrence happened at an Autism Society Friend and Fun event, and I met a mom and her daughter, a girl who is a year behind The Boy in school. He’s gone to school with her for two years, so her mom assumed I knew her daughter, or at least knew her, but I had never heard her name mentioned before, and had never seen her before.

I’m clearly at a disadvantage when this happens, and never quite sure how to respond without seeming rude, and I really should come up with something to say. I would love to know more of these kids and their parents. It would be great for both of us to make more connections, but it’s almost as if he is a celebrity and lives a double life.

Apparently, what happens at school stays at school, and the first rule of school? Never talk about school. 😉