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A Few Changes

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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!

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Perspective & Paradigms

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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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My Reflection

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This morning, pulling out after dropping The Boy off at Grammy’s, I actually thought, “Why do we always have rough mornings when I am the most stressed?”

I must be new here.

Autism knows no time schedule. It doesn’t take a break because I have a million things to do between now and this weekend, and not enough hours in the day to do them. Nor does it sit back and say, “Your right. This is completely irrational and poorly timed.” It is what it is, whenever the hell it wants to be.

But there’s more to it than that. The Boy doesn’t get upset and wound up in spite of my stress. He gets upset and wound up because of it. There’s no lack of empathy – that’s a complete myth. There is an overabundance of it. The Boy picks up on my stress, nervousness, anxiety, and mirrors it right back to me.

For some reason, this is a lesson I find myself having to re-learn again and again. Someday I’ll catch on.

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Not Enough Hours

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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. 🙂

The Truth is

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We’ve been settling into our new summer routine this week, as The Boy’s Summer Day Camp run by the Autism Society started on Monday. We are working out our timing and logistics to get him there and get him home, and allow him time to transition. He has been rolling with it.

Until today.

Literally seconds before we were to walk out the door, he complained that he couldn’t find his key.

Uh-oh.

He has a collection of mis-cut keys from the hardware store and he pretends that each belongs to a vehicle that he “owns.” The various vehicles come in and out of favor, but he never forgets one. His pretend vehicle du jour is a Dodge Ram van that has been retro-fitted to be an ice cream truck. And apparently, he misplaced the key at some point between the time he left camp yesterday and the second we were leaving the house this morning. Unbeknownst to me.

90% of the time he has misplace something, he ends up finding it at Grammy’s house, usually under the bed. I tired to encourage The Boy to “look again” at Grammy’s and if he didn’t find it there, to “look again” at Camp, and we would “look again” at home this evening before we determined that it was “gone forever” and he would have to “get a new vehicle”. He insisted he had already looked, and it was gone. (If your kiddo is anything like mine, he scans the room at eye level and if he doesn’t see the thing he is looking for, it has grown legs and walked away. Heaven forbid he actually pick up the myriad things on the floor to look underneath for the missing thing.) He said he didn’t want to go to camp and began making a general ruckus. Then miraculously, the key appeared there at the end of the bed, even though Grammy knew it hadn’t been there before…

The thing is, we can try to prevent meltdowns all we want, but sometimes, they just come flying at you like a brick out of nowhere. And you just have to roll with it the best you can, and try to de-escalate the situation and keep your wits about you, always thinking about the next possible steps. We’re “if-then”-ning in our heads the whole time, instantly coming up with plans b-g just for every contingency. Would it have helped if I had helped him prepare for camp the night before? Maybe. But knowing my kid, even if we put the key in a safe spot last night, that doesn’t guarantee he gets it out after bedtime and moves it. And it doesn’t guarantee that it wouldn’t have been something else he decided he needed at the very last minute this morning.

The truth is, sometimes your best option is to just roll with it and forgive yourself for not having seen the brick before it hit you in the head. Sometimes bricks happen.Keys to the Sonic

What It Means to Be Not-Quite-Verbal

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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.

Tracks

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See the tracks in the picture? The ones heading toward the swing on which The Boy is perched? Look like tire tracks, right?

Nope.

They’re from The Boy himself. From walking and stimming as he does when we are home. And apparently he does it in such a repetitive fashion that you can now discern his route. The track on the right is for leaving the swing area, and the track on the left is for heading to the swing area.

Ever wonder why some of our kiddos get obsessed with train schedules and maps? With routines? Have wonderful memories for directions?

Makes me want to geotrack him…

The Trip Recap

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The Boy and I just spent a long weekend visiting old friends and relatives up north. I had promised him three years ago when we moved away that we would visit. This year, I made it a goal to make good on my promise. When an airline opened up a new, cheap, nonstop flight, I jumped at the opportunity.

I encouraged The Boy to make a list of places he’d like to go and people he’d like to see. I coordinated with people on Facebook who wanted to see us, and planned our trip in morning-afternoon-evening chunks, allowing for travel time via rental car. Fantastic Babysitter put us up, even though she was out of town for a couple days. It worked out beautifully as The Boy was comfortable in her house, a place he had been many times, and we saved money on a hotel. The bonus was that the weather was gorgeous, and she lives in a quiet neighborhood, allowing us wonderful downtime at the end of each jam-packed day.

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❤ She hadn’t seen him since she was 3, but asked to hold his hand in the parking lot 

Most of our “places” to visit were really restaurants (um, yeah… we like food. A lot.), and we made a point to eat at places we just don’t have back home. Even better was the company. Every single visit with friends was a joyous, picked-up-right-where-we-left-off extravaganza. The Boy had even prepared three PowerPoints (unbeknownst to me) to share with his former ASD teacher at lunch on Saturday.

The Boy was simply amazing. At our favorite eclectic arcade on Friday, one of his favorite games had been removed, and I didn’t even realize until after the fact, when he explained to me a few times that it had been moved (I put two and two together because of the perseverating on the same point). But he didn’t get upset about it. The only thing that really did upset him was that he was reminded about the glory of the ice cream truck, something we just don’t have where we live, but a treasured memory from living up north. We glimpsed one a few times during the weekend, but didn’t end up realizing his wish to purchase ice cream from one, and that was a tragedy by Sunday.

I could see fault lines forming by the time we got to the gate on Monday to get back on the plane to go home. His laptop was not charged and would not charge. It got a little hairy until I enlisted the help of the gate agent, who allowed us to use her outlet behind the desk. The rest of the day, The Boy was a bit “tetchy” about everything. He didn’t want to come home, but was mollified by a stop at his favorite arcade in Myrtle Beach before heading back home.

It was a huge success, a wonderful time, and I was incredibly proud of The Boy. The people we visited were not the only ones impressed by how much he has grown in three years.

Today is the Day

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Today is The Boy’s last day of 8th grade, of middle school, of being anything but a teenager. He’s excited. I’m excited. We’re all excited. And a little wistful, too. Even The Boy exclaims, “How did we get here?” and “How did this happen?” I tell him time flies, and if you blink, you miss it. I tell him all those old cliches, those that have been around so long they must be true. It sure feels that way.

Where is the 5 pound 6 ounce baby I was holding in my arms yesterday?

Where is the toddler who got away from me in the department store and hid in the middle of a clothes rack?

Where is the preschooler who couldn’t wait for the water to warm up to get into the small pool we had bought, and whose smiling lips turned blue?

Where is the 2nd grader who kicked his classmates?

Where is the 4th grader who sang the Star Spangled Banner at the high school football game with his choir?

Where is my 7th grader who began to have crushes on girls?

Who is this extra man in my house who is taller than me, requires shaving at regular intervals, and has hands and feet bigger than his dad’s? Who can barely fit on the couch if he stretches out on it? Who “practices” driving every time we get into the car?

Ah, yes. He’s my son, even though I can’t possibly be old enough for it to be true. My son. And me over here? The one with a bit of dust in her eye? I’m one proud mom.

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And Then

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Yesterday, I wrote about the huge meltdown The Boy had on Thursday night.

And then…

On Friday, I was a mess. After the boys left in the morning, I took a deep breath and then began to cry. I journaled, because writing usually helps. I cried off and on the whole time I was getting ready for work. And I can usually talk myself down, saying, “Ok, you have to go to work now, and you can’t cry at work, so time is up. Dry your tears, and let’s get going.” That did not work on Friday, and there were a couple of moments I had to use a paper towel on my desk to wipe my tears. I texted a friend about how awful I felt.

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It’s like the hangover after a binge. It’s inevitable, you can’t control it, and you really can’t make it go away until it’s ready to go away.

This is why people say that parenting a chid on the spectrum is like having PTSD. I think in my case, it’s more accurate likening it to chronic stress. Either way, it’s not a good thing, and we who deal with it have to be real careful not to ignore it.

To myself and others who deal with this kind of thing:

  1. Take the day off, if you can. It adds more stress to try to be “on” for others and shut those emotions out, and if you can give yourself a day to recover and process, then please do it.
  2. If you can’t take “the day after” off work, at least take it easy, and find something to take your mind off the meltdown. Replaying it over and over in your mind doesn’t usually do much good.
  3. Pat yourself on the back for doing the best you could under the circumstances. You and I both know people who would not be able to do what we do.
  4. Plan some sort of treat for yourself during the day. Something to look forward to, and something positive.
  5. When you have time, express it somehow. Journal, paint, talk to loved ones and friends who get it. Write a letter to yourself and send it, or burn it. Do something with all of that. If you don’t do this, it will fester.
  6. Make sure you are taking time for yourself somehow in your daily life. I know how difficult it can be, but even if you lock yourself in the bathroom for half an hour a week to read magazines, you just have to find some time for yourself to get away from the relentless needs of your child. I think this step helps us find strength when the big ones hit, too.

This is just my advice, from my experience. It’s not an exhaustive list, and frankly, I’m working on many of these, too. Meltdowns are difficult for the kiddo, and the parents, and aftershocks can be felt for days, weeks, and months afterwards. They’re not going going to go away, but we can mitigate the effects with a plan in place. That’s what we autism parents are best at, right? Planning? 😉