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One of the biggest struggles I have as a parent to an autistic child is that others are not as prepared as I am. If there’s one thing I’ve learned in the nine years since The Boy was diagnosed, it is that you need to do the groundwork in advance, or the likelihood of a meltdown or other avoidable issue increases. For example, when you know dad will probably cancel Spring Break, have a plan B to distract The Boy from his disappointment. Learn which restaurants only serve soda pop, so you can either avoid them or bring your own juice boxes. Half days before break are going to be hell, so find out who will be absent, prepare The Boy as much as you can, and hunker down.

hands-coffee-smartphone-technologyLast night, I got a text from The Boy’s band director. “Wear your band shirts tomorrow for pictures.” Um… The Boy wore his band shirt yesterday. If I had known, say last week, I could have prepared a bit better. No meltdown this time, because I just made him take it off as soon as I got the text to avoid spillage, but he’s basically wearing the same thing to school two days in row. *sigh*

It’s almost April, and I’m remembering why we used to have The Boy’s physical scheduled for February… camp applications. Except the local Autism Society chapter has great and exciting news (that they’re having a hard time getting the word out about) – they will be hosting an overnight camp and a day camp this summer! Great! How about some information to go along with that, like dates, and say… physical requirements? Because if it gets to June, and there are no more spaces, or we didn’t get a physical in time, I’ll have a melted kid on the sidewalk…

I know I can’t rightly expect the rest of the world to conform to our needs, but whatever happened to a little advance notice? I don’t think I’m asking too much, and I know people get busy, but seriously? IEP questionnaires that get sent home two days before they’re due, no information yet for chaperones for a trip to Washington DC in May, no word yet on when our spring IEP might be…

The Boy is not alone in his anxiety :/

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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 Рmaking 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.

young-game-match-kids

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.

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. ūüėČ

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. 

Turning it Around

Sometimes what makes me most proud of The Boy is when he is able to turn it around. Heading for a meltdown, but able to stop, relax a bit, refocus, and get back to work.

when the school calls...A couple of weeks ago, I was at my desk at home, preparing to go to work. I got a phone call from the school, and it was the counselor (not a usual person to call). She explained that The Boy was in her office because he had gotten upset in Language Arts, and had become destructive, throwing things, and sweeping things off of desks.¬† This is not typical for The Boy unless he is very upset.¬† The counselor said, “He thought maybe he should call you,” and I replied, “Ok…” I was sure he was going to ask me to come pick him up, which I don’t often do, as that would teach him that he can escape the tough stuff. Besides, I have to work, and don’t get paid unless I do, so there’s that.

“What’s up, Bub?”

“Today is the same as yesterday,” he said.

“Does that mean that Friend-Who-Is-A-Girl is not at school today?”

“Yeah. She moved,” he said, whining.

“I don’t think so, Bub. I think she’s just on vacation or has a cold or something.¬† But here’s the thing.¬† I know you’re upset, but throwing things and knocking things off of desks is not a good way to handle your anger, right?”

“Right.”

“And going to school is your job, and you need to be in class, right?”

“Right.”

“So what’s the plan? Are you going to take a breath and go back to class?”

“Yeah, I think I can do that,” he said, and handed the phone back to the counselor.¬† She didn’t sound at all sure that this was a good idea, but I know my son.¬† Once he has decided upon a course of action, he does it.¬† And he did.

The TA emailed me later that day to explain that there had been a substitute teacher in language arts, and she had been called away, so she didn’t want to leave him in class with someone who didn’t know him, and that after we talked on the phone, he had an excellent rest of the day.

I think many of us have a hard time “turning it around”.¬† It’s hard for me to focus on the positives of a situation that is making me tear my hair out, or to switch gears right in the middle of something.¬† But I am so proud of this young man being able to do this.¬† Proud and hopeful.

It Could Have Been Really Bad

This morning, the cat escaped as The Man and The Boy left to go to Grammy’s.

He’s escaped before, but usually sticks close to the back deck, or just circles the house, allowing us to follow him.¬† Today, however, there was a rabbit involved, and the hunter in Raffi burst loose.¬† When the man went to retrieve him from the back ditch (between our lot and an overgrown field behind our house), Raffi actually hissed at him and bared his teeth.

Rather than risking a hand to the monster, The Man decided to drop The Boy off, and return to see if he could get him back inside.  But when he returned, Raffi was nowhere in sight.

He called me at work, and all the possible outcomes ran through my head, and remained in the back of my mind all day.  When I ran home after work to change, I looked all over the property, making smoochy noises, purring, and chirping as I went.  Nothing.

I started to think he was gone for good.

And I started to wonder what I was going to say to The Boy when he asked if Raffi had come back.

I prepared him as best I could, explaining that he may come back tonight, or sometime in the next few days, but that if he didn’t come back in about a week, he may be gone for good.¬† He processed this, and seemed ok, but when we got home and Raffi was still not around, he began a negative cycle, which was not going to end well.¬† How do you tell a kid to be patient when he is worried he’ll never see his cat again?

After about an hour of the pacing, the self-talk that started to get louder, including phrases like, “He’s NOT coming back,” I heard The Man’s truck pull in.

And then I heard a small kerfuffle, and The Man saying, “Open the door!” to The Boy, who was outside pacing the deck.

And Raffi was back.

Tired Boy

Raffi was visibly tired after carousing the neighborhood, or ditches, or the neighboring golf course… who knows where he went (we are contemplating a go pro for his head in case he pulls this stunt again, because we are that curious).¬† The rest of us were incredibly relieved, and impressed he could find his way home. And The Boy was happy not to have been abandoned after all.

Being “On Call”

I’ve seen reports from studies that indicate that those of us who parent a child on the spectrum often suffer from similar symptoms as those with Post Traumatic Stress Disorder, and does anyone really wonder why?¬† We are in a constant state of alert, listening and watching for any signs of anxiety and stress that are in a state of escalation.¬† As some of my fellow bloggers have written, we know our kiddos littlest sounds and know every bit of that language.

We were at the convenience store the other day, and we stop so often that the woman behind the counter, who really means well and tries to understand, takes it as a personal accomplishment if she can get The Boy to say hello. He happened to begin stimming and galloping toward the door, and she said, “Oh no! What’s wrong!” I calmly explained that that was his “happy noise,” and we finished our purchase and left. I realized that most people wouldn’t know that.¬† Most people also wouldn’t know that the “errr” that has bit of an edge to it and comes quickly after a question is asked is a sign of irritation and disagreement that could escalate, or that pounding either on the floor or any hard surface often is a precursor to pacing, at the very least, and a meltdown in the worst of times.

Listening, watching, and being “on call” for these little noises and behaviors 24 hours a day, 7 days a week can be exhausting, and why I so appreciate our weekly date night.¬† For one night, I can stop listening and just relax.

on callIt’s also another reason my current job just isn’t working for me.¬† Even though I don’t get paid much, I am expected to answer texts, emails and phone calls even when I am not at work.¬† Do I have to?¬† No, but the expectation is there (and believe me, I’d be in the dog house at work for quite awhile if I just ignored it), which means I can’t even have a weekend where I’m not jumping at every notification from my phone.

A big reason I left teaching was because it took too much from me, and I didn’t have enough left for The Boy when I got home. Now, it seems I have jumped right from the frying pan into the fire. I’d love to only have The Boy to be concerned with, and not other people’s ridiculous concerns about lunchmeat and plastic leis.¬† The Boys crises I have come to expect, know, and understand.¬† Anyone else’s seem assinine in comparison, and it’s that that is getting old.

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 ‚Äúbear witness‚ÄĚ 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‚Äôt. ¬†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.

Mornings Suck in Autism Households

That is my theory based on the anecdotal evidence I have encountered.  Maybe not for everyone, but for a lot of people I know that have loved ones on the spectrum.

One morning this week, everything was running along splendidly until I suggested to The Boy that it might be a jacket day as it was below 50 degrees.  No problem!  Yes, he agreed.  A jacket was a good idea.

And then we got to the couch, the time to put on socks and shoes, and wait for the bus. ¬†And the bus was early, and The Boy couldn’t find his hat. ¬†And there was NO WAY he was going to school without his hat…

Add in the stray kitten who had hung outside of the house since the previous evening, meowing away – he was trying to get in while I was marching out to the bus in my robe and slippers to plead for a few more minutes, and Raphael was anxious to get out because he always is, and because he was very curious about this kitten. ¬†Add all of that to The (intransigent) Boy stuffing his feet, face, and hands into the couch cushions to ensure he couldn’t go to school without his hat.

Finally, he’s out the door, but not without a stream of under-the-breath curses about hats and school and buses. ¬†I climb back into bed, and The Man says, “Maybe you should set that stuff out the night before.”

(Can you imagine the dark look?)

Yep.  Mornings suck.

 

PS РGuess where the hat was?  Right next to his bed.  *facepalm*

Helpless and Dumb

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child. ¬†Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears. ¬†“Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing. ¬†I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school. ¬†I don’t know why. ¬†No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you. ¬†Can we clarify the bus rules for you? ¬†Let’s make a checklist so you don’t forget your band binder again. How can I make it better? ¬†And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you. ¬†I hope I can get you on the bus tomorrow, but I don’t know if you will go. ¬†I don’t know what will happen then. ¬†I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers. ¬†All of us autism parents just throw stuff onto the wall to see if it sticks every damn day. ¬†Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board. ¬†If I had a dollar for every time I said or thought “I don’t know what to do‚Ķ”

All I can do is rely on experience, try, try, try, and hope, hope, hope. ¬†But in the meantime, I hate it when he’s upset. ūüė¶