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

img_4047

Not goodbye. We’ll see you soon!

Advertisements

Back to School

pexels-photo-103592

The blog has been quiet this week, and I’m sorry for that. It’s a busy time of year, and I’m sure that most of you are experiencing some of what we are, too.

Most autism households are experiencing anxiety and behaviors right about now, too. Mama Fry from Autism with a Side of Fries is experiencing this in spades right now, and I read her posts and think, “Is there any doubt that our kiddos need ESY?” Come IEP time, I wish we could show the team video of what we experience at home these first few weeks of school. At our house, it includes perseveration about fire alarms and drills, fixation on the time the bus leaves school, and the fact that his middle school email address no longer works. There’s a lot of pacing, and more than a few angry outbursts. And in our case, lots of emails from The Boy at school to me at work, explaining his plans to fix all of his imaginary vehicles because they have all broken down.

In a word, anxiety.

So that when the district insists that he doesn’t qualify for a program to provide him continuity, we can say, “But this is what happens after break. Autistic kids need consistency, and if you offered year-round school, we’d be the first to sign up.”

Good luck to all of you tribe members. It’s a tough time of year.

 

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.

pexels-photo

 

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. 🙂

CHARGER-VS-CHALLENGER-HELLCAT

He’s Excited. I’m Scared.

We got The Boy’s schedule finally, and it was slightly different than expected, with no core class second semester and a passel of scary-sounding electives like “Principles of Business & Finance.” I emailed his new teacher with my concerns, and she said those are the career and technical education courses they take as part of the Occupational Course of Study, and that the special ed teachers work closely with those teachers to make sure everything is modified. Seniors get first pick, so there’s not much left for freshman when they schedule them.

Ok. But if you have a 9th grader who still can’t multiply and divide independently?

And the lack of core classes was due to the only male PE class being offered at the same time during second semester, and he can just take Biology when it’s offered again, either sophomore or junior year.

I look at this schedule with these long-titled classes that last an hour and a half, and I know there will be no parapro, and I start to get a little queasy with all the what-ifs racing through my brain.IMG_5643

My constant refrain seems to be “How does this work?” And I have to let go. I have to trust that it will be fine. I have to give this new set of teachers a chance to prove they know what they are doing and that they are professionals.

And while I do that, I am preparing my own “curriculum” of supplementary stuff to help him find some meaning in his day, just in case “Sports & Entertainment Marketing” isn’t quite up his alley. Like maybe a coding workshop, and some time spent feeding some animals at the wildlife shelter.

“Thinking will not overcome fear but action will.” ~ W. Clement Stone

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??”

wood-cube-abc-cube-letters-48898

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 😉

Heads Up

Grammy took The Boy to a doctor’s appointment today. She does that for me in the summer so I don’t have to take time off work. And I don’t really need to be there unless I know something big (like shots) are happening. If all we’re doing is weighing and measuring and asking if everything is going well, Grammy can handle that.

Except when they don’t tell you in advance that shots are necessary.

doctor-medical-medicine-health-42273Three shots, to be precise. When Grammy texted me, I thought, “Maybe he can be coaxed into it, but my guess will be no.” I was right. She took him to lunch, and I called to reschedule.

It’s the preventable stuff that just kills me. Because it doesn’t have to be this way. I get that your office is busy. I know medical receptionists have a lot to do. But is it possible, just maybe, that with your patients on the spectrum, you could give them a heads up, so we don’t have to waste all this time and unnecessary anxiety?

I know what I ask seems outrageous, but in this day and age of “patient portals” (ours currently doesn’t work), and texts to remind us of appointments, maybe it’s an overlooked possibility. I’m just sayin’…

Inclusion Starts with “Hello!”

Thursday night, The Boy and I ventured to one of the marching band rehearsals from which he has been excused, due to logistics and conflicts with summer day camp. We wanted to just stop in and possibly say hi, meet some people, help with the transition. I made arrangements to leave work early so I could pick him up and get him there before it was over. We arrived and discovered the brass section in the band room. I told The Boy we would wait until they were on break to enter, so as not to disturb them. After waiting for a good bit with no break, he wanted to find the woodwind section to see how many of his friends from last year were in attendance.

IMG_3890

He loves it so much..

We found them in the library and were welcomed in by the band director. We sat and listened for a bit, and decided to head back to see if the brass were on break. They were, so we walked in, and The Boy’s middle school director was at the front of the room. I can’t quite describe the look he gave us when we walked in, but it was not pleasant. He didn’t say anything – not, “Hello,” not “Hey,” – nothing. No welcome, and no introduction for The Boy to this room full of kids who didn’t know who he was, save for a few. The Boy, oblivious, walked over to one of his friends and gave her a hug as she sat, and then I suggested we leave again, as our presence certainly did not seem to be welcome. We went back to the library and the woodwinds were being released back to the band room for a full rehearsal. The high school band director greeted The Boy again, and The Boy talked his ear off the whole way back to the band room. We listened for a bit to the full band play, and suggested again that we leave before everyone was released, and The Boy agreed.

He may be oblivious, but I am not.

While thankful the high school band director at least had the sense to appear welcoming, I’m sad that none of the high school students had the wherewithal to introduce themselves to The Boy. I’m disappointed that not one of the three drum majors, students in high levels of leadership, recognized their duty to welcome a member, albeit a non-traditional one. I’m livid that a professional educator who taught my son for two years cannot even greet him, and would go out of his way to make him feel unwelcome.

And right now I’m at a loss. I knew this wasn’t a terribly inclusive group to begin with, based on The Boy’s friend’s experience last year, who is also on the spectrum, and lacked a single friend in the group even at the end of the season. I knew I wouldn’t gain any friends by forcing our way into the group, even with the weight of the law and human decency behind us. But I have not been so uncomfortable, and made to feel so incredibly unwelcome since I encountered mean girls in my own middle school experience. It was that palpable. Do I try to educate and advocate? Do I engage outside help either from school administration, the autism society, or the state band directors association?

Or do I give up?

Is this really worth it?

I don’t know. All I know is that this shouldn’t be.

Nice to Hear

Yesterday, I emailed the Amazing Camp Director, new member of The Boy’s tribe, to let her know that I would be picking him up today so I could get him to the tail end of marching band practice this evening so he could show his face and begin to make some connections there. I also let her know how much The Boy appreciates her, because I think it’s important to let people know when they’ve touched your life.

She responded: “The Boy is awesome!! Seeing him puts a HUGE smile on my face!! He re-supplies the bubbles & he’s doing a fantastic job! His counselor left early today & won’t be in Thurs or Friday … He was great about asking who his counselor would be, I loved that he didn’t allow the uncertainty create anxiety (he may have been anxious but he knew to ask!!!) I explained it’s always so difficult because everyone wants to spend the day with him but (the substitute counselor) was the lucky one this time😀 he gave me the biggest smile & hug!! He truly brightens my day!!”

I’ve written before about what a mystery my child’s day is to me because he isn’t so verbal about what happens at school/camp. Notes like this not only warm my heart (he really does make fans of everyone who gets to know him!), but give me a glimpse into his day, his thoughts, his personhood. Notes like this are also a sign of a great educator and a wonderful person. ❤

pexels-photo-103669

You Need a Village

Yesterday was a classic Monday.  One little change to our routine made me about five minutes behind, which ended up with our leaving The Boy’s lunch on the counter, and my breakfast behind. The night before, we had also realized that we had left his swim trunks and rash guard at Grammy’s the previous Friday, which meant she had to throw them in the dryer so he could change into them when he arrived to her house.

Needless to say, Grammy made sure he had dry swim clothes and a full lunch for camp on Monday. Without her help, we would have encountered major interruption to the day, and in all probability, a meltdown to go with it (maybe two, if mine count).

While I don’t have a ton of friends down here to rely on, I do have my parents, and we need them. Everyone needs a village. When we lived up north, I relied on friends and The Boy’s tribe. There are times when you can’t do it all, when things fall through the cracks, and when you just need a damned break.

It’s a difficult thing to find and build your village, but it’s very necessary. I just don’t know how I could do it without some kind of support (besides my wonderful husband – sometimes even the two of us need additional hands!). And I don’t pretend it’s easy. The very nature of a special needs household may preclude being social with other families on any kind of a regular basis. But there is always a way. Don’t forget that I found Fantastic Babysitter (who is now one of our dearest family friends, and was/is a huge part of The Boy’s tribe) on Craigslist…

pexels-photo-111962