On Being “Enough”

Posted on November 25, 2015 by simpleijustdo

After a fairly rough meltdown, it takes awhile for The Man and I to process, as well. We were discussing the events of the weekend, and then The Man asked if there was anything we could do about The Boy’s insistence to strangers and acquaintances that we have a purple dog at home named Barney.

I shook my head noncommittally, as I was still focused on the situation that had triggered the meltdown this weekend. I wasn’t even thinking of anything else, but apparently The Man had some other things on his mind, as well.

I got quiet, and he asked if he had said something wrong or upset me. I started to cry because I was upset. Not with him, but because I didn’t really know the answer to his question, and I was overwhelmed with the feeling that I am not enough.

We used to have quite the “village” to help me navigate raising a boy on the spectrum. Now, I feel like I’m it, I’m the authority. I have stopped believing that anyone in the school system knows any more than I do about autism. And there’s a very obvious limit to what I know.

I don’t know if the fantasizing about pets and cars he has “owned” and all of that can be curbed (or should be curbed). I don’t know if it needs addressing or if it will go away with time. I just don’t know.

It’s easy to get overwhelmed with worry, and I guess I’m particularly susceptible to worry after a big meltdown. And I suppose that’s ok. But it’s not a nice feeling, and I hope it passes quickly.

Time to Know the Why

Posted on November 24, 2015 by simpleijustdo

Your challenges change over time. The same is true when raising a child on the spectrum. Yes, I no longer need to worry about The Boy bolting into a street or into the crowd at a mall. I no longer have to worry about acquiring words and peeling meat sticks so he will eat some protein.

363px-Decorative_toilet_seat I do have to worry about the increase in anxiety. I have to worry about how seriously I need to take the screams of “I hate my life!” and “Today is my last day!” I do have to worry about just how to handle a meltdown when my son is bigger than me, in a public venue, and out of control.

Saturday, the recording of toilets in public spaces issue reared its ugly head again. I should have known it was coming. His dad cancelled on him for Thanksgiving, and hasn’t called in several months. And the talk of toilet models and interest has increased exponentially. I should have known, but I didn’t. And I had to put my foot down and remind him that we don’t record toilets in public bathrooms. Suffice it to say, it didn’t go down well. Heh.

After he had calmed a bit on the way home (a two hour trip to our favorite town which was supposed to include a stop for me at a stationary store so I could give The Man some ideas for Christmas, but was cut short), part of The Boy’s plan was to show me how I was mistaken by showing me videos that others had taken in public restrooms. Ahem. Yes, he is indeed a teenager.

He calmed, but didn’t let it go as easily as he has in the past. He’s of an age where he is questioning authority. But autism mixes it all up because parts of him are teenager, and parts of him are 10 year old boy, and parts of him are too smart for his own good.

When we got home, I let him settle, and then we talked. We talked about how Mom and The Man make the rules, and it isn’t a democracy, although I will always listen to him. We talked about why some people might not understand his recording in a public bathroom, how they might misunderstand and be afraid. How they might call the police, and how the police might not understand. We talked about how The Man and I don’t want him to be in that situation. We talked about some of the things he had said to me when he was angry were not nice, and that everyone says things they don’t mean when they are angry, but that apologies are necessary afterward.

He still has a burning need to record toilets as they flush. I can’t erase that. But if he’s of an age where he can try to prove me wrong in some of my judgments, he’s old enough to listen to why I make the decisions I do.

(We also talked about how next time we go somewhere, we make mom’s stop first.)

Mom’s Voice

Posted on November 20, 2015 by simpleijustdo

Got a text this morning from The Boy’s TA: “He’s having a rough morning and wondered if he could call you. Are you available?” I said sure and within a few minutes, was talking to him on the phone.

It was a weird night and morning. We had flash flooding last night so I had to leave my car at Grammy’s which meant The Man had to drive me back this morning to retrieve my car. And then he had to drive The Boy to school which had a two-hour delay. Obviously enough to trigger a rough morning, although he seemed in good spirits before school.

“I should’ve just gone to Grammy’s with you this morning. I’m not feeling too good.”

“Not feeling good, like with your emotions or your body?”

“My body.”

“Well you kind of have a shorter day today, and I do too. So try to stick it out and I will meet you at Grammy’s after school, ok?”

“Ok.”

His TA said he was much more responsive after the phone call and had started getting his things together to go to class. For some reason he seems to just need to hear my voice sometimes to reassure those anxieties that are keeping him from doing what needs to be done. We have meds now, that are as-needed (we haven’t needed them yet) for this type of thing. But I’m happy that talking to me seems to do the trick for now. Sometimes I just need to talk to my mom too.

Up, Up, and Away

Posted on November 18, 2015 by simpleijustdo

This past weekend, we went to a fundraiser for a local Eagle Scout project. He is the brother of a young man on the spectrum, and his project was to raise enough money to construct and supply a sensory room for his brother’s school. His dad is also a pilot, so they were offering $25 rides in an airplane, plus there would be food and t-shirts, a bounce house, and other people to hang out with. I wasn’t sure we could swing the cost of the ride, but we went to support the project. Once we got there, everyone was asking The Boy if he was going to go up, and at that point, we really couldn’t refuse. So we went up, and it was grand. I’m so glad we did.

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No News Isn’t Necessarily Good News

Posted on November 12, 2015 by simpleijustdo

Communication from the school regarding The Boy has dwindled down to virtually nothing. And I learned the hard way when The Boy was first in preschool that assuming that no news is good news is never a good idea.

He started preschool at his home school in January after being kicked out of his speech-based preschool run by the hospital. In March, his dad and I went to teacher conferences and asked about kindergarten. The teacher laughed and said, “Oh he won’t be ready for kindergarten next year! We’re going to recommend he do another year of preschool.” She waited 3 months to tell us she didn’t think he’d be ready. We went home and started looking for a house in a district with better schools and a better reputation for kids with autism.

And now, everyone from his school has gone dark… Maybe I’m gaining a reputation for being “that mom” and they don’t want to poke the bear. I don’t know. I do know that the district is depending on a TA with three other children on her load to act as my son’s primary special education teacher. The teacher who teaches his special education math and language arts classes was out for a week last week, but tends to freak out about things that aren’t very freak-out worthy. I’m supposed to get an IEP progress report with his report card, and haven’t yet received one although I’ve had the report card for over a week. His classroom teachers don’t often communicate directly with home, and expect parents to “look online” for assignments, tests, grades, everything. That makes their job easier, and mine infinitely harder (which assignments have been modified, are the due dates and number of questions the same for my kid, or not?). Two of his teachers have started a texting thing, where they will send out mass texts about upcoming quizzes and tests – great! Except the last text I got was on a Sunday, saying there was a test the next day… I was signing his agenda every night, and that is also supposed to be where assignments are written, but it’s pretty blank now, so I haven’t been checking or signing it.

They’ve taken him out of a social skills class (that’s in his IEP), and put him with his TA for an hour at the end of the day. They still call it “Social Skills” but the teacher is listed as his TA (is that even legal? I asked the principal in my last email and she didn’t respond to that question), and from what I can tell there are no other kids in it. They work on getting homework done. I don’t know if the class he left remains, or if they reassigned that teacher. She also used to teach him math, but they took him out of her class for that, as well (and she was a good one).

I’d love to sit down with The Boy’s TA over coffee and just have a heart to heart with her. Let her know that I believe she is the only thing keeping my kid afloat over there. Let her know that it’s not fair for the district to use her like they are. And let her know that she doesn’t have to try to solve everything herself. I think she’s trying to keep me from worrying.

But the lack of communication is making me nervous. Time to investigate, I guess.

Stickers with a Story

Posted on November 11, 2015 by simpleijustdo

This is a planner post, but it’s a little more than that.

Those of us that are into planners and planning know that people make money off of us. Big money. The planners themselves aren’t cheap (I’m looking at you, Erin Condren), and then the accessories… Holy Cow. Search Pinterest for Planner accessories and you’ll see what I mean. There are hundreds of people on eBay who just sell planner stickers. Planner Stickers! And when you add in shipping… well, let’s just say I’ve never felt comfortable spending that much on a consumable, and especially now that it would cost me the better part of a day’s pay for a couple of sheets of stickers…

So what’s a girl to do? All I wanted was a set of stickers to put on days when bills are due.

I started looking at some neato stamps by l2e, but the neato stamps were at least $14 a set. Add in the shipping, the ink… Not consumable, but still pricy.

Then I went to iconic fonts – the sometimes-free fonts you can download from enterprising young graphic designers that are like tiny little pictures. I thought if I could find a set that had the icons I wanted, I could put them into a word document, or even a label template and print them out. But it was difficult to find the icons I wanted, especially for free. Those pesky young graphic designers want to be paid, too.

And then I found this, by Mike Rohde, which are actually some hand drawn bullet journal icons. At first I thought, “Those are really cool, and kind of what I want, but I can’t draw!”

No, seriously. I can’t draw. I used to prepare my students for this fact the few times I had to draw things on the board, and they still laughed. I explained that this is why I was a music teacher… Can’t draw to save my life.

But.

I came across another pin, recommending Sara Zorel on YouTube. One of her videos was called “Doodle With Me: Planner Icons”. Now, doodle I can do. So when you say “Doodle,” I think I can like that tiny blue engine that could…

And with some practice in my moleskine, I did.

I bought a flag shaped punch on clearance at Walmart for $3, and I already had sticker paper (In fact, had scraps of it from my NaNoWriMo prep – more on that later), and so I colored the scraps with markers, punched out some flags, and started doodling.

It may seem small, but I am totally geeked that I can make for myself and not spend money unnecessarily. And that I can kinda sorta draw. Not people, though. That’s just scary.

Shift your paradigm, and when you say to yourself, “I can’t,” question it. Sometimes you can amaze yourself.

Participation

Posted on November 10, 2015 by simpleijustdo

Participation trophies.

Let me tell you that I’m on the fence here, but I’m leaning.

Kids should not get something for nothing.

I do not think you need to have a graduation ceremony from preschool. Nor do I think you need one from kindergarten, 5th grade, or 8th grade. There should be one graduation ceremony, honoring your hard work, which was a long-term goal. The rest of that nonsense does not need to happen. A celebration? Sure! Graduation? No.

Nor do I think 8th graders should be taking limos and renting tuxes for their 8th grade dance. That’s a prom thing, and some traditions should be kept to the original event.

But participation awards?

That’s a little different.

This country has an obsession with sports. If you look at the highest paid people in any society, you will see what they value in their culture. Look at how competitive kids sports are. Look at how young they enter AAU leagues, and spend their entire summers (and sometimes school years) traveling, training, and competing. Look at how many news stories you see about parents who don’t know how to support their children, and cannot control themselves at games.

Every field day, my kid comes home with a participation ribbon. He doesn’t win stuff in sports. I didn’t either. Just about every kid in my elementary school was on a soccer team. I wasn’t. I had absolutely no interest. I played parks and rec basketball and softball a bit. I was on middle school and freshman volleyball, and I played co-rec in college. But it wasn’t my bag.

And it gets old seeing other people get stuff all the time. It’s like watching the popular kid be popular all the time, or the really pretty girl be the center of attention all the time. It just gets old.

And maybe the participation is kind of a socialist thing, spreading the good feelings around to everyone, regardless of athletic ability. But before you jump on the socialist part of that statement, think about the other part. The part about spreading good feelings around to all the kids. Isn’t that something we want?

I don’t think participation ribbons make any kid think they deserve stuff for not earning it. A participation ribbon never made me think I had really won anything. But it told me that at least I showed up and tried at this thing I wasn’t really into. And in truth, there’s a lot of value in that. Lots of people grow up and have jobs that they’re not really into, and they aren’t the very best in their field, but they still get paid because they show up and try.

The Boy has taught me a lot. Every kid is different, and too much in our society tries to peg them into the same interests and hierarchies. It’s time we really look at kids as people in their own right. Just because they didn’t win the tournament doesn’t mean they didn’t learn anything from it. In fact, they probably learned much more from losing.

So if a participation ribbon commemorates showing up, trying, and learning, isn’t that what life’s really all about?

Participation ribbons for everyone. Everyone.

Common Sense

Posted on November 5, 2015 by simpleijustdo

“Common Sense isn’t so common.”

How many times have you heard this phrase?

How many times have you really thought about it, though?

It seems like every day I come across some situation where someone’s behavior or the string of words that come out of their mouth are shocking to me. “They don’t have a lick of sense!” would be a usual response around here.

When employees are at work at a retail store and are “spoken to” because they are not being discreet with their phones… and there is no one in the store. When teachers “modify” a test down from 75 questions to 15. When a young man with autism isn’t paid for a year of work at a restaurant. I could go on.

Maybe we are becoming more individual which is a good thing. I mean, everyone is entitled to their own opinions and thoughts, and heaven forbid we go back to the days where kids were seen and not heard, and women voted the way their husbands did (or even to the days when women couldn’t vote!). Everyone was polite then, and there were things that just weren’t done — everyone conformed. And that’s not ideal, either.

But I think somehow, with all of this “entitlement” to our opinions, we have lost something. Is it the ability to think rationally? to problem solve? to logically analyze what’s going on and make deductions based on evidence? to reflect on ourselves, our own behavior, motivations, and actions?

I’m not one to bash technology. I think it’s a great tool, I use it every day, all the time. But I wonder if our reliance on technology has turned us into a people that cannot think for themselves. Not just about opinions, but about facts, evidence, and what to do with those facts and evidence to make things better for other people and ourselves.

I saw it when I was teaching, and asked my 6th graders to really research and think about the purpose music had in different cultures. They would simply go to google and type: “What is the purpose of music in South Africa?”

Thinking takes time and effort, and unfortunately, I think people of all ages are doing less and less of it. And as I always told my band kids, when they weren’t practicing their skills, “If you’re not getting better, you’re getting worse.”

Food for thought, my friends.

His Hopes & Dreams

Posted on November 4, 2015 by simpleijustdo

The other day, The Man, The Boy and I were riding around as we are wont to do on the weekends, and we happened upon the local agency that employs young adults with intellectual and developmental disabilities once they’ve aged out of public school. The Man and I explained to The Boy what the young people with autism and other issues did inside the building. “They put together candy bouquets, do laundry, all sorts of stuff, and that’s their job,” I explained. “Isn’t that cool?” I asked.

A pause from the back seat, and then, “Can you be a band director there? Because that’s what I think I’d like to do.”

My heart just about broke while I was trying to find an answer. The Man responded that to be a band director you had to go to college, and in order to go to college you had to listen to your teachers and do all of your homework because that would be a lot of hard work. “I do all of my homework and listen to my teachers,” The Boy replied. “Ok,” we said and the subject naturally wandered in other directions as we drove on.

Could The Boy go to college, earn a degree, teach his own classes someday? Quite possibly. Don’t for a second think that I doubt my sons abilities.

What I doubt are the supports he would need to get there and our ability to afford those supports that are not in place. Realistically, colleges are not yet equipped for our kiddos (Hell, his middle school is not yet equipped…). And neither is the real world.

So how do I go about tempering my boy’s dreams, when it is the very last thing I want to do?

Demands, Airplanes, and Christmas

Posted on November 3, 2015 by simpleijustdo

Text from the ex (summarized by me): Hey, you haven’t told me if I can get The Boy for a week after Christmas, and oh by the way, I can’t do Thanksgiving. And I want him to fly up because I can’t get off my sorry ass and drive.

I can’t tell you the last time the ex has spoken to his son on the phone. He hasn’t seen him since last Christmas. He’s made one piddly child support payment in the last 60 days, but he is going to text me and all in one breath tell me he’s cancelling his next visitation but wants to put him on an airplane after Christmas and could I hurry up about getting back to him because he has to buy plane tickets.

How about you hurry up and pay child support? How about you hurry up and call your son? How about you —

Deep breath.

Only four more years. Putting him on a plane will never happen because it would take money and planning skills, neither of which he obviously has.

smh

…

Update: Since this was written, I texted him to ask what he had found out about airline assistance programs. He promised to call Sunday to talk about it. Never called.