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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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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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.

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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.

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. 😉

Sharing

The Boy is a only child, and as such, doesn’t have much experience with sharing. It’s a common problem for a neurotypical kid, and for one that lacks theory of mind (the ability to understand that others may have different thoughts and emotions of their own), it is even tougher.

This past weekend, The Boy got up earlier than us one day (!) and headed to the living room. He turned on the On Demand feature on our cable and found the Sonic cartoon he was looking for, pressed play, and promptly began recording it within some app on his iPad that records in black and white. This is a new twist on an old interest – making things look like the pre-color era, and has even permeated his drawings, making Sonic look like Steamboat Willy.  Pretty cool, actually.

The problem came a little later when we returned from a family outing, and he promptly sat on the couch and started u the On Demand feature again. The Man’s intention, of course, was to come home and watch a little golf (and therefore I was going to take a nap). Because the living room TV is a shared TV, and The Boy was told he had to work out a schedule with others that want to use it, a meltdown ensued.

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Time to pull out the board games and practice turn-taking, too.

What can you do? He just doesn’t have much experience with this? If he really had social skills class (like he’s supposed to), I’m sure this is something they would practice. He used to practice turn-taking when he was a little one in speech therapy. All of this has me wondering, what social instruction is he getting, anyway?

A new friend reminded me of those days, hauling him to speech and occupational therapy even before we had a diagnosis. And the speech therapy fell to the wayside when the school began to provide it. He had an awesome speech pathologist in Elementary who focused primarily on pragmatics, but here, his time with any speech (or social skill) instruction has dwindled to almost nothing. Maybe I need to see what insurance will cover and get The Boy back into a social skills group outside of school again… There’s clearly some skills that need practicing.

Time to Diversify

Where we live, we have certain stores and activities close by and available to us. We have a local Autism Society Chapter. We have the ocean. We have a Walmart, a Michael’s, and a TJMaxx. We have to drive a little bit to get to a 4-screen movie theater. We have to drive even further for a Target, Old Navy, bowling alley, or an arcade. We have to drive a couple of hours to get to the big city stuff. Like a trampoline park.

IMG_3505We went in May last year, and The Boy had an absolute blast. But he was by himself, and after awhile, you realize it would be much more fun with friends. We talked about inviting his friend C and C’s brother and sister the next time we came, or possibly to celebrate their birthdays, as C and his brother are twins and have their birthday a month before The Boy’s. We talked about it several times with C’s mom, a friend of mine, because we would have to coordinate driving or possibly rent a vehicle big enough for all of us.

A couple of weeks ago, a picture popped up on my facebook feed from C’s mom. They were at the trampoline park. And I was miffed. We happened to be in the same town (two hours from home) that day, and my first thought was that The Boy was left out. It has been one of his most earnest wishes to go there with them, and we got nary a text about the trip?

And I have to admit that I’m still miffed, but I’ve mostly let it go, because it’s life and shit happens, and people aren’t as thoughtful as they could be. But mostly because I realized we need to diversify. The Boy doesn’t have enough friends, and we need to work on that, because depending on one family, one kid, is kind of sad, and rather hopeless when C’s mom is as scattered as she is (it’s not a knock – she really is incredibly scattered and disorganized, and she would be the first to tell you). So we’ll work on this, which is difficult for this introverted mom, but it needs to be done. We can’t live in a vacuum, and The Boy deserves to have some fun with friends.

Helping Him Connect

The Man and I were grocery shopping this weekend, and if you do like I do, and go on certain days of the week, you tend to notice the same people shopping on “your” days. I also tend to do the shopping alone, because I can get in and out of the store in twenty minutes without the boys, and it turns into an hour long negotiation with them. But this weekend, The Man tagged along, and we left The Boy at home enjoying his independence.

One of the people I have noticed on previous trips is one of The Boy’s friends-who-is-a-girl. She kinda, sorta recognizes me from band events and such, but I don’t often do more than smile big at her. I mentioned to The Boy that I saw her on one of these trips, and so now, when I leave him at home, he asks me to let him know if I saw her.

This weekend, I did one better. After I saw her, I Facetimed The Boy to let him know, and who walked down the aisle right as I was doing it? The girl in question! So I approached her and said, “Do you want to say hi?” and pointed the face of the phone toward her. A bit confused, I saw a big smile break out on her face when it clicked who I was, and who was on the screen. “He’s showing you his cat,” I said. “Awww! How cute! Hi!” she said to The Boy. His weekend was made, and even though I probably confused her for a minute, I helped him make another connection with a friend.

It may not have been the most “normal” occurrence for her on a weekend, but a mom’s gotta do what a mom’s gotta do to help her kiddo make connections and spread awareness and acceptance.

Dances, Dodgeball, and Decisions

The Boy is in 8th grade and has never been interested in any of the school dances – go figure. This past week, however, his school band had a Friday night “Bandathon” fundraiser, which was followed by dinner (pizza) and a dance.  Several weeks ago, I asked The Boy if he might be interested in staying for the dance…

“I’ll think about it,” he said.

In Boy-speak, this usually means no, kind of like when your mom said, “We’ll see,” back in the day.

When I brought it up again, I offered to chaperone if he wanted me to, and at that point he said, “I think I’d like to do that.”

!!!

I had no idea what type of dance this would be, so I thought I had better cover my bases, and ended up showing him how to slow dance with a girl in middle school, just in case the opportunity arose and he might want to ask one of his friends-who-are-girls to dance.

After the performance, and the pizza was inhaled, the band director spent the first hour of the “dance” reading off ticket numbers for prizes that had been donated for a raffle. He then turned on his computer, and played three or four songs over the speakers (a la “Cupid Shuffle”), started a game of dodgeball (??), and returned to calling off ticket numbers. That was the “dance”.

Dodgeball?

The important part was that The Boy had fun.  When the kids danced, he made some herky-jerky movements near them.  When they played dodgeball, he went out on the “court” and wandered around, throwing a ball when it was handed to him.  He got to show some of his hand-drawn pictures to his friends-who-are-girls, and play his DS a bit.  He was a happy camper, and that’s all that matters.

The Importance of Friends

I’ve never made friends easily. Maybe it’s a spectrummy trait, but I’ve always been somewhat socially awkward, not sure what to say, or when to say it in a conversation.  I don’t read others’ cues all that well, and it’s always been tricky.  My friends over the years have been much like me, not completely socially adept, and never the popular ones, and I like it that way.

The Man makes friends easily, or so I surmise, because he seems to know everyone within a 100 mile radius.  Part of that is growing up here, part of it is having several successful businesses in the area, so that people either went to school with him, bought a mattress from him, bought some blinds from him, or had him fix their sink/closet/screen door/roof. We often can’t get out of the grocery store on a weeknight without stopping to talk to two or three people. And part of his day is structured around breaks at the convenience store and the hardware store so that he can shoot the breeze with some folks.

But, we don’t hang out with other couples. We don’t “entertain”. When we watch HGTV and these young couples are adamant they need space for that, he and I just look at each other uncomprehendingly.  We barely use our dining table for us, let alone needing space for other people. As an entity, we are not very social.

friends at the beachThe Boy has friends at school, and there is one family with a few kids that he feels comfortable going to hang out with outside of school.  Otherwise, he enjoys hanging out in his room with his electronics, or walking around the yard. He enjoys being by himself, obviously.

We like it this way.

However… People need friends.

Being social to the point of doing stuff with other people is difficult, I think, for all three of us. And just because something is difficult, doesn’t mean it’s not necessary.

There are other children at school that I think The Boy would like to hang out with, but either the families have not shown much interest, or I’m not sure how to contact them. And we don’t often attend the autism society chapter’s functions because many times they are on Saturdays, when we do family stuff.

When I left my job, the one person I considered a friend there pretty much fell off the face of the earth. I tried for awhile, but when it wasn’t reciprocated, I stopped trying. Everyone I work with now is in a different place in life than I am, i.e. just quit college… And those in the area I do call friends are soooo, so busy.

It’s a difficult thing. Between homework battles, trying to get dinner on the table, paying bills, looking for more meaningful work, and enjoying each other as a family, I feel like there isn’t much time anyway. But I also increasingly feel like we’re more and more isolated, and we need to do something about it.

Even if it isn’t comfortable.

Conversation Starters, Spectrum Style

Our kiddos on the autism spectrum need practice with social skills.  I tend to let The Boy relax when he gets home because I know he’s worked hard all day, staying quiet when all he wants to do is make silly tuba noises, paying attention when all he wants to do is draw, and doing his best to get his work done all damn day.

But, neither does he get a free pass.  We still have homework to complete and projects to do at home. And summer is not a free pass in this house, either.  Especially if there is no camp.

I have always taken summer as a wonderful opportunity to target areas in my own learning, or develop new ways of doing because we run out of time during the school year.  This is so ingrained in me, that I’ve been planning with The Boy for all of the areas we can practice skills because we just don’t have time, and The Boy does not have the energy or patience after a long day of school.  I was reading a blog post on Momastery.com I found through Pinterest that looked like an activity that had potential not only for social skills and conversation practice, but could also provide an opportunity for me to get inside The Boy’s head a bit. The Holy Grail for autism parents.  But as I read, I realized it wouldn’t quite work for us, because open-ended questions often do not get answers from The Boy.  There are just too many possible answers, and he freezes.  He needs selections to choose from –  multiple choice, if you will. And then I remembered this other game of question and answer, a get-to-know-you game where possible answers are provided…

We’re pretty used to modifying activities and assignments around here, so I’m sharing with you an activity (free printable) I developed, “Planting the Seed – Conversation Starters for Kiddos on the Spectrum“.  Check it out, download it, tailor it to your own kiddo and then come back and let us know what you thought and how it worked.

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