A Perfect Storm

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Yesterday, The Boy left his bag on the bus. Not his backpack, like he originally tried to tell Grammy when he arrived to their house. His “electronics bag” which he carries everyday and contains his iPad, his 3DS, his games, and all of his chargers. Cha-ching.

As soon as I arrived (after 5 o’clock), and determined what was really missing, I contacted The Boy’s teacher, who had contacted the vice principal who deals with transportation. He emailed back to say he would look into it in the morning. *sigh*

Remarkably, The Boy was not overly agitated or anxious, although when his laptop finally ran out of juice around bedtime (because his charger was in his bag left on the bus), he let loose a few loud and angry epithets, and I had to snuggle up next to him to calm him enough to sleep.

I also found out yesterday that his special ed teacher would be out today due to dentist appointments that she had forgotten about for herself and her two children. Ok. We’ll manage, I told her.

And then I received two texts from her classes (math and English) reminding us to sign and return a movie permission slip for today. Guess what? No permission slip was in his backpack. So who do I email? Weren’t we doing this dance a couple of weeks ago?

Finally, after emailing his elective teacher to explain that we would need one more night for a project, he emailed back to say it was no problem (yay!), and to explain that The Boy had a quiz today (wha?).

So today, The Boy has an absent teacher (check), a missing electronics bag (check), no permission slip (check), and a quiz (check). Everything will be fine, right?

Did I mention that we might get hit with Hurricane Matthew this weekend, and everyone is buying French Toast supplies (milk, bread), water, and generators at an alarming rate?

Everything will be just fine…

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The Truth is

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

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…

Summer Day Camp

If you follow this page on FaceBook, you probably saw on Monday that we got the notification that The Boy was accepted and placed in the Autism Society’s new Summer Day Camp in our area. I was on pins and needles all day waiting for the notification because there were only 30 spots, and I just knew they would be overwhelmed with applicants. They didn’t seem overly worried, but I was up at midnight when registration went live, just in case. Good thing too, as they ended up taking kids that qualified in order of the date and time of registration!

In any case, it is completely grant funded (in other words FREE), and runs for six weeks, every damn weekday, from 9am to 5pm. Down here in the land of “ESY?? We don’t got no stinkin’ ESY!” this is a golden opportunity. Trained staff, fun activities, 1:1 and 2:1 ratios…

And vans. Six of ’em. To take the kids places.

You see, even though I have the perspective to be able to see how awesome this will be, The Boy still sees it as a change from summers past. Camp Smile, while it was the best we could hope for for the past three summers, wasn’t all that. And he hated it at first because it was so different from the awesome ESY program he had up north. But he grew to love it. And now, another change. So I had to sell it a bit when I told him yesterday. And I opened with the vans.

“What kind of vans are they?” he asked. He was hooked.

Do I know my kid, or what? 😉

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Spring Break is Here. Woo Hoo.

Everyone loves vacation, right? Everyone loves a week off of school!

Nope.

The Boy in recent years has looked more forward to it, I’ll admit. But the reality is that the slightest changes in routine throw us all off, and Spring Break is a million tiny changes in our routine and a lot of big ones. Normally, I wake up at 6am to do yoga. Apparently the act of walking down the hall at that time of the morning, gives The Boy some sort of pre-wake up call that I wasn’t aware of. Because apparently, when he is on Spring Break, and does not need to leave the house as early, I am still required to wake up at 6am. Grrr.

And someone (I shall not name names) ate two packages of pop tarts (!), at some point this weekend (we usually get breakfast elsewhere), which leaves one to last us until Wednesday. That same someone complained to Grammy that he had not been given breakfast…

That same someone also required umpteen reminders yesterday to get out of bed and get ready to leave. He waited until the last minute, couldn’t find his headphones, and got upset… sigh… (later found under the bed at Grammy’s, just like everything else that gets lost).

He also thinks he can stay up all hours of the night watching movies in his room.

I’m going to wake him up in 14 minutes. That will be 15 minutes earlier than yesterday. We shall see if allowing him more time to procrastinate helps the situation. But I’m pretty sure the only thing that will help this situation is sending him back to school

Spring Break in an Autism Household looks NOTHING like this...

 

The Two Hour Delay

You might be an autism parent if...The effects of a two hour delay last all day longOur school year has been riddled with two hour delays. And although my recent posts have been fairly centered on my (adverse) reaction to these, they do negatively affect The Boy, as well. As always, if he can expect it, and be prepped for it, the result is mitigated. But if it comes as a surprise, and is combined with other students being absent, teachers being late… It’s not very pretty, and this was the case this past Monday.

I understand why the district does it. They try very hard to avoid cancelling school because there is no such thing as a make up day in the South. They could very easily build in some days, as this is the second year in a row that we have had a dearth of these routine-upsetters, but that would take forethought and planning… and I digress. The problem is that our district encompasses many long miles of coastline, the east end of which is very susceptible to flooding during heavy rains. There is basically one road going in and out of town, and there is one very small school there. But if those sixteen kids can’t go to school, then the rest of the district has to close too. Even if there’s a chance they may not be able to make it, or the wind will be too strong, or there just may be water over the road… I am exaggerating, but only slightly.

The district needs to take a hard look at their policies. Two hour delays may not seem like much, but it only takes three to add up to a full day of instruction lost. Couple that with the detrimental effect on kids like The Boy (and neurotypical parents like me), and we are starting to have a serious problem.

Monday evening, The Boy asked when the next two hour delay would be. That’s not something I can predict, considering the last two were for no apparent reason. At that time, I pulled up my Weather Channel app, which said no chance of rain until next Tuesday. Now, as weather forecasts are wont to do, this Friday looks like rain and a chance of snow in the AM. If that forecast remains, you can bet there will be a delay. And now our job is to prep for that possibility…

Rigidity Again, but Better

A few weeks ago, I wrote about having my own sort of meltdown when we had a two-hour delay for school for no apparent reason. I resolved at that time not to get stuck again, and the next time this happened, I would stick to my normal routine of getting up at 6am to get myself ready.

It happened again yesterday morning, and I think the fact that the delay was utterly ridiculous added fuel to my fire. But that is another blog post… I did what I had resolved to do, and woke up at 6am, got myself ready. I still had a little bit of a time crunch – I’m really not sure how – but the process of getting everyone ready was much smoother.

BETTERMORNINGSAt one point, I was putting together The Boy’s lunch, and The Man stood in the kitchen, a little warily, I suppose, and asked if there was anything he could do. I told him no. And I realized I needed to have a yes answer to that question. I need to allow him to help me when it gets down to it. I was a single mom for so long that I get into that mode sometimes, that I-am-fierce-I-can-do-it-all-on-my-own-and-no-one-can-stop-me mode. But I’m not all on my own. And it’s OK to ask for help. It might take a little training for everyone involved, but it would be better for everyone involved if everything didn’t fall on me in the morning.

And another big part of that is that The Boy can do some, too. So much of what I do for him is just routine left over from when he was eight years old. Now he is fourteen, and much more capable of handling responsibilities. I need to step back and let him.

So, I guess it’s time for a morning training plan. I’ll get that on my list of things to do, and I’ll get back to you and let you know how it goes. 😉

My Rigidity

Routines are key in an autism household. If The Boy knows what to expect, we avoid confusion and meltdowns. But it’s a fine line, and you have to feather in some opportunities to learn how to be flexible. Because that’s real life.

Nothing new there.

As I get older, however, I’m finding that I am becoming more rigid. That my anxiety dramatically increases when the routine is disrupted. We had a two hour delay for no apparent reason last week, as none of the east coast brouhaha was headed our way. But I sort of flipped out a little. That meant I had to get two people ready and out the door at the same time – something I used to do with aplomb, but now is not part of our routine. I couldn’t even wrap my brain around it, and was in quite a state until we were out the door. The Boy? He was just fine, of course.

Is it age? Are the routines we have becoming too ingrained? Have I rid my life of so much stress that I can’t handle even a little anymore?

I’m not sure. It can be unsettling, though. And I’m not sure how to “fix” it. 

If you’ve experienced something like this, or have any thoughts, please share. I’m listening. 

An Open Letter to Kids’ Cable Channels (I’m Looking at You, Nick)

Recently, you changed the schedule. Spongebob had been coming on all summer at 7am.  And then all of a sudden, it wasn’t.

Can I just ask one thing?

Why is it that you give adults all kinds of warnings when you are going to move an adult show to a new night or time, but you give absolutely no warning to the kids?

TVMaybe your test-markets are saying to try something new.  Maybe you think kids actually want to watch some cheesy disney-esque sitcom at seven in the morning.

All I ask is that you give us a heads up.

When you don’t, we spend a week dreading mornings.  The Boy refuses to go to camp or school, or quickly packs up his stuff and takes it out to the truck, insisting that he and The Man leave an hour early because Nick changed the schedule, and Spongebob isn’t even on anymore.  Ever.

(And could I even hope to try to find it on On Demand? Nope.  Then after a week, it suddenly appeared on On Demand, but 2 of the 5 episodes were in Spanish… So helpful, Time Warner Cable.)

Miraculously, Spongebob came on again at 7am after about two weeks. And then… just as fast, it wasn’t anymore.

All I know is that if NBC did this with Grimm on Fridays in season, or if AMC had done this with Mad Men, they would have a riot at their doorsteps.  Why is it fair to do it to kids?  Especially kiddos on the spectrum who depend on their schedules to help them make sense of this world.  When you change things on them, when they can’t count on Spongebob to be on at 7am like always, this world can be a scary place.

All those child psychologists on your payroll, and not a single one of them could figure this out? You’ll have a much more lasting impact on your audience if you actually treat them like real people.

All It Takes is One Dumb Bus Driver

The BusThis past Friday, The Boy was left behind by his bus.

Our outside light was on, and our front window blinds (all three of them) were open. The driver rolled up to our house early, honked once, waited less than 10 seconds, and then turned around in the cul de sac and left.

Recently, when our regular bus driver began to arrive earlier and earlier, we worked out an arrangement with her. She now waits for him, and does not expect him to exit the house until around 6:30am, which has been his expectation and his routine for the entire school year.

When the bus left on Friday, I ran out to the porch, waving my arms, to no avail. The Boy began to get upset, wondering how he was going to get to school. We were in a panic. I called the transportation office who informed me there was a substitute bus driver, and assured me that they would instruct her to come back to pick The Boy up. In the meantime, he had returned to bed, unwilling to go to school if he was going to be late.

At this point, The Man offered to take The Boy to school himself (along with a bribe of a donut) so that he could arrive on time. I gave The Boy the choice of waiting for his bus to return, or going with The Man, and he chose to go with The Man.

When the bus arrived, I went out to speak with the driver. She interrupted me before I could get my first sentence out, was extremely defensive and rude, making faces at me, and interrupting me many, many times. She even challenged the truth of what I was saying, and pulled another child up from his seat to “bear witness” that The Boy was not visible when she was there. I told her the arrangement we had with our regular bus driver, but she seemed much more concerned about whether or not I was accusing her of being late, which I obviously wasn’t.  I was shaking by the time I was finished and stalked back into the house.

Incidents like these can not only have immediate and damaging effects (like a meltdown, or refusal to go to school), but they can also have lasting effects on children like The Boy. It will be a long, long time before he can trust that his bus will not leave him behind. Drivers need to have patience with all students, but especially with those with special needs. Would this driver have waited ten seconds after honking and driven off if The Boy was in a wheelchair? Probably not, but she appeared to not have any regard for The Boy’s specific needs.

Everyone employed by the school district that comes into contact with our kiddos should have training about what autism is, the core deficits children with autism have, and how each employee can help students with special needs find success throughout their school day. Anything less is not acceptable.

This is a large excerpt from the letter I am sending to the Director of Transportation, courtesy copied to the Director of Special Education and the Superintendent.  I ain’t playin’ and it’s not over if you’re going to be rude to me.