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…”

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. :(

Boys in the Bathroom

The Boy has had his first encounter with bullying at school.  I should say teasing, because bullying is really defined as a repetitive, targeted behavior, and I have no evidence that this has been going on for any length of time.  Truth be told, I was very happy with the way the school personnel handled it, and took some responsibility, as well, because we kind of knew this particular instance might happen.

Let me explain.

When we first moved south, The Man noticed that anytime The Boy went into a public bathroom, he had a tendency to “drop trou” to go pee, meaning he would drop his pants in order to do his business.  Apparently, this is not typical male behavior in a restroom – I would not know that, having never been a part of this particularly male experience.  When The Man told me about it, and explained that he just couldn’t do that, I didn’t have an answer as to how to fix it — this is not something that I am equipped to teach him.  And having hit puberty, The Boy was certainly not going to let me anywhere near him while he was anywhere near peeing.  This was clearly a dad’s job, and you can understand why a step-dad may be less than comfortable with the responsibility.  We ended up urging The Boy to use a stall when possible.

Fast forward to the second week of school, when I got an email from The Boy’s program teacher explaining that The Boy had been teased about doing just this, and talking to others while peeing, as well.  Another group of boys reported the teasing directly to one of his team teachers, for which I am grateful and appreciative, and that teacher actually had another teacher cover his class that same day so that he could take the offenders to the teachers lounge and “read them the riot act” over the incident. “We just don’t tolerate that here,” he explained via email.

I called The Man and we decided The Boy needed a lesson in how to pee in a public bathroom, and that The Man would be the one to do it.  He didn’t balk, he didn’t hem or haw.  That evening, he said, as calm as ever, “Hey, I need to show you how to pee,” and The Boy said, “Alright.”

The Man and I exchanged a look, complete with two pairs of raised eyebrows…

The Man pretended our living room wall had two urinals on it, which The Boy liked, with his toilet obsession and all. The Man then proceeded to break the process into steps. “You put your thumbs here in your waistband, and pull down,” and they practiced as they faced the imaginary urinals on the wall. He explained the whole process, and explained that the reason boys do it that way is so that they don’t show their butt to everyone else, so it can be more private.  The Boy paid attention, and seemed to understand.

The Man and I were relieved that The Boy seemed so willing to take instruction, and we can only hope he is using his new-found knowledge.

In any case, I was proud of them both.  Sometimes a man’s gotta do what a man’s gotta do.

Re-training

plannershot1The downside of having a son with autism in secondary school is the sheer numbers of teachers we have to re-train each year.  And I’m only half-joking.  Most of the teachers we have encountered since the Big School Switch of ’13, have been accommodating and flexible, and have fallen in love with The Boy relatively quickly, wanting to do anything in their power to help him succeed.  But here we are at the beginning of a new school year, dealing with stuff that is very clearly spelled out in his IEP, and the teachers are not yet implementing.

One of The Boy’s IEP goals directly relates to his use of the agenda, speaks to his difficulties in this area, yet within the first two weeks of school, we still only had one teacher ensuring he was utilizing it in his class. Then the homework hit the fan this week, when I had no idea two assignments even existed before they were due in science and social studies.

I emailed the teachers last night, basically copying and pasting from last year’s introductory email, explaining The Boy’s need for help with communication, planner use, and the dire need for them to let me know what the hell is going on, but stated in much more genteel language.  And I got some nice responses.  Yet in today’s planner entry, there was clearly still some misunderstanding from whoever-it-was that was writing in the planner (clearly not the teacher – an aide? a substitute? Who IS this person telling me that his assignment wasn’t finished and needed to be finished by tomorrow??).

And then there were the assignments we had busted our butts to make sure he got done, that were returned in his planner this evening without having even been turned in.  Yet another area of difficulty, yet another area in need of training.

After several emails, I finally got some traction and his program teacher has agreed to meet with his teachers tomorrow to review this stuff so we can get him going on the right track before he gets too behind. Thank goodness I don’t have to re-train her every year! She’s worth her weight in gold. :)

Our Summer Plan

So, summer break is here.  How did that happen??  One minute it’s May, and the next… Well.  The Boy has two weeks of vacation, just enough time to drive him up a wall.  He is spending leisurely, unstructured days at Grammy’s until ESY starts up.  ESY this year will consist of him meeting up with his teacher at the local library and doing God knows what school-type things for an hour and a half.  And then four weeks out of the summer he will go to a day camp for kids on the spectrum and their siblings, the same one he went to last year, which he grew to love.  And then he’ll have two weeks off again in August before starting up again, one of which will be spent visiting with Fantastic Babysitter and her new baby who are coming to visit (and I CAN’T WAIT TO GET MY BABY FIX!!!).

And me?  I’m not missing the summer break yet.  My job can be stressful, but I do not need the break anywhere as much as I did when I was a teacher.  Plus I live at the beach, so any time I get too stressed…  I don’t want to make you too jealous. ;)

Grammy is being the wonderful grammy that she is, and taking off work a day this week and next to take him somewhere special, maybe the waterpark, maybe a movie to spend some quality Grammy-Boy time with him.  And I get off work fairly early so that we can still go do stuff together.

I’ve seen some other great ideas for adding a little structure to the summer:

  • This one has a theme-a-day which is great to fit into your schedule when you need it or want it
  • These are some great ways to prep your child for the changes in routine, and how to add some structure to the summer
  • And this is a comprehensive list of ideas and resources to ensure brains are still engaged in the summer months

I hope you are ready.  I feel pretty good about it, at least for The Boy.  I hope we still get to spend some family time together, and it doesn’t fly by too fast.  It’s still my favorite season.

Let us know what you’ve got planned in the comments!

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

sandy boy

Autism and Progress

The Boy earned all A’s this quarter, and I was so proud.  I was over the moon, though, when I read his program teacher’s comment that he has made great strides with his social communication over the past two quarters (ever since he has started at his current school).

progress

You see, report cards don’t tell you much about neuro-typical kids, let alone those on the spectrum.  Traditional report cards, anyway.  They don’t tell you about improvement and progress, they are simply a snapshot made up of a bunch of other snapshots about whether or not your kid knows what the female reproductive part of the flower is, or what an Egyptian dynasty is.  Those snapshots do not tell you whether or not your child is making friends, able to initiate a conversation, or independently pack his own backpack.  Report cards most definitely don’t tell you those things.

And in an autism household, where we take every day as it comes, and don’t think too long or hard about where The Boy will be and what he will be doing in 10 years, because there is no way to predict, and therefore little practical use in worrying/dreaming about it, I really don’t care if he knows what an acute angle is, or what the word “illuminate” means.  I’m very glad he has access to the 6th grade curriculum (and would be fighting the system tooth and nail if he didn’t), but I know how little of it he will actually use in his day-to-day life (because no one really uses any of it in their day-to-day lives, neurotypical nor on-the-spectrum).  I am much more interested in that IEP progress report that tells me how he’s doing in terms of counting change, and flexibility with his schedule.  That set of stapled sheets that is a report on the defined goals that the people who know him best have set for him for the year is way more important to me.  Because the more he succeeds at making progress toward those goals, the more I can plan for his future.  Because those skills, the being-able-to-make-a-joke-that-cracks-up-the-entire-band-class-including-the-teacher skills?  Those are the ones he’s gonna need when he’s done with school.  And those are the ones I care about.

The Lego Movie: An Autism Mom’s Review

Last weekend, Grammy and I took The Boy to see the Lego Movie, and if you haven’t seen it, you should.  It is delightful, and not just for children.

The main reason I enjoyed it was the message.  For years, I have lamented the lack of room for creativity in today’s schools.  I used to have a poem somewhere about how school crushes creativity by creating sameness, and the paradox is that in a society that claims to celebrate the individual, the opposite is usually the case, at least as I have observed.

When I was young, I was involved in Odyssey of the Mind, which was a contest in creativity, giving kids the parameters of a problem, and seeing how they could solve the problem.  I don’t even know if it exitsts anymore, but  I doubt kids today would have any interest in something like that, let alone excel in it, and it’s through no fault of their own.

The Boy's building - no instructions! - constructed at the Lego exhibit at the museum last year

The Boy’s building – no instructions! – constructed at the Lego exhibit at the museum last year

In fact, Legos themselves have changed over the years, increasingly being sold in kits with directions on how to make something specific, rather than a bucket of bricks with which to make anything a kid desires.  This can create problems in an autism household when a specific brick goes missing, and therefore the directions cannot be followed!  I posted about a fix for this a long while ago, but directions can become a problem, for sure. The message of the movie, surprisingly, was that it doesn’t have to be that way.  That there is a benefit in following the directions, and teamwork, but that it has to be balanced with individual desires, and creative thinking.

From the autism mom’s perspective, I watched my son actively engaged throughout the movie, often laughing loudly, and catching lots of the subtle jokes.  It was fantastic to see him enjoy it so much.  And Grammy and I enjoyed it thoroughly, as well.  If you haven’t gone, you need to.  There’s a reason it’s still in the theaters!

Managing My Own Anger

Yesterday was a doozy of a Monday.  I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up).  There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba.  Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting.  That band director is discriminating against my child.

boy with tubaLuckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that.  I was extremely preoccupied, and downright pissed off.  Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well.  I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response.  And I began to shake uncontrollably.  Not with rage, but with anxiety.  I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties.  When The Man came home an hour later, we talked, and strategized some more, and I continued to write.  I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write.  The Man knows that getting all of my thoughts down just right in my response was the key to my calm.  Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night.  I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter.  I have a plan in place, no matter the response.  He will play the tuba, and will not be switching to anything else.  I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning.  The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?

Feeling the Love

That's my boy!Last night, The Boy had his first band concert of the year, and played music he has had for about two weeks on his new instrument, the tuba.  There was standing-room-only in the auditorium, and The Man and I watched from the back with The Boy’s grandparents.  We heard him play, as he is the only tubist in the 6th grade band, and we heard him play well.  And I was proud, listening to my boy do his best, and do it well.

It was a great concert, and after it was over, he was geeked, excited.  Once in the car, he went right for his DS (a re-discovered love, as it has been in the bottom of some drawer for a couple of years), but was giggly and goofy.  We had to pick up The Man’s truck, and he loves to ride in it with him, so I drove on alone for the few short miles to our house.

As the car started to climb the rise of the bridge over the Intracoastal Waterway, I began to tear up with emotion as I realized how thankful I am for all that has happened in the past year.  Maybe it’s a little early for the annual retrospective, but it really has been a great couple of weeks.  Things were getting a little dark there for awhile, but now The Boy is in a much better place, school-wise (and a GREAT band program, to boot!), I have a new job that I love, and the very best husband ever.  And we’ve moved to a place where it reaches 70 degrees on the 5th of December, which also happens to be around the corner from the very best parents in the world.

Can you feel the love?  I sure can. <3