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 Tuba is Here

tuba practiceIt seems the crisis has passed, although I have had to email the band director to find out the current assignments, and to ask him to make changes to his last quarter grade based on the tests I had sent him on video.  I think “maintenance” will be required within our new arrangement, but I don’t think they will again try to steamroll me into something that just isn’t right.

The tuba has arrived, and I again thank all of my readers that tried to help.  I actually found a decent one on ebay, and it is a smaller, easier size for The Boy to handle.  It isn’t pretty, but it does work, and hopefully we can work from where we are now.

According to the director, The Boy has begun playing more in class, but is still having problems starting with everyone else.  I had asked to come in and take video to do some reverse modeling, as suggested by the autism specialist, but the director was not comfortable having me come in to do that – just wanted me to “explain” to The Boy when to start playing.  So we continue to play this game, with him pretending like he is making accommodations and modifications, when he really just doesn’t get it, and isn’t going to lift a finger to try.

But I see progress, and I’ve stopped them from going down the usual path when they encounter a kid who “doesn’t meet the criteria,” so maybe, just maybe they’ll think twice before doing it to the next kid.

Tuba Update

Aren’t we done with this yet?

Well… maybe.

I wrote my four-page letter to the principal almost two weeks ago, and haven’t heard a single word from her, nor from the band director.  I haven’t heard a thing from anyone (except from LinkedIn, which notified me that the band director had viewed my profile, the same day that the principal received the letter… a coincidence?  I think not!), and so I am beginning to believe they have stopped trying to get him to switch instruments/quit.

I still need to get him an actual tuba to practice, and I can’t believe the help you all have given me.  It’s amazing, really, and makes me realize that the internet can be a very good place.  College band directors and nonprofits have been contacted by us, as well as on our behalf, and one of my readers here referred to tuba players as a “brotherhood,” and he said they take care of their own.  This brought me to tears (good ones!) because that is something I hoped for when The Boy began school band.  I saw it as a place he could belong, and meet neurotypical kids who were a little more likely to be accepting of him.

It also reminded me of when I was in the college marching band, in the piccolo section, and we traveled to Las Vegas for a bowl game.  The stadium continued to sell beer past halftime, and by the end of the game, the opposing team’s fans were incoherent, and several young men were actually threatening us, the piccolo section of the band!  The tuba section, all big, beefy boys left their seats to stand in the aisle between us and our bullies with their arms crossed.  It was a very brave and gallant gesture.

You helpers and supporters are lifting this boy up, in the face of someone who wants him out.

I feel very thankful.  We should have a tuba in the next week or two, and then I will ask to visit class to videotape so we can work on some modeling for The Boy, and help him to participate, which should have been the focus of all of our discussions from the beginning.  Keep sending us your positive thoughts, as now The Boy will need to get caught up!

The_Big_Brass_(8101293170)

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?

Meet The Boy

In light of recent comments, I thought it might be time to do a post that re-introduces The Boy and his issues to this audience.  The Boy was diagnosed with classic autism at the age of five.  Although he has a fairly high IQ, and is a generally bright boy, he was not diagnosed with Asperger’s because he did have developmental delays, and was in speech and occupational therapy starting at the age of two.  He has since “graduated” from OT, and now has speech therapy in the form of working on pragmatic social skills once a week with the speech therapist at school.

In his new school, the pilot program for which we switched schools has organizational periods for the kids on the spectrum at the beginning and end of the day.  They meet with the autism teacher and aides who help them get organized for the day in the morning, and help them get organized before they head home.  He also has a social skills class with his autism teacher.  Ideally, he would be interacting with other 6th graders on the spectrum, but he is the only 6th grader in the program, currently, so they spend some time on social skills, and some time on homework and organizational skills during this period.  He is also allowed to eat his lunch in his autism teacher’s room.  This is his safe haven.

The Boy has issues with executive functioning, verbalizing his needs (as well as verbalizing anything having to do with school, like assignments and tests), and gets overwhelmed by his senses at times.  He has issues with processing speed, and can get overwhelmed with assignments that require a lot of writing.  He has the requisite deficits in social and organizational skills, as well.

Per his IEP, he is to receive extended time on assignments and tests, sensory breaks as needed, modified assignments and tests, use of graphic organizers, testing in small groups in a separate setting, use of a word processor, and use of visual work systems (visual cards that will cue him as to what to do next, and when the next break is) in all classes.

His teachers do not send home much homework, which helps us, because like most kids with autism, he has a very great antipathy for it.  Logically, schoolwork should be done at school, rather than at home, and it just doesn’t make sense to him to have to do work at home.  When we do have homework, we break it into chunks that we can do from 15-30 minutes at a time, and then we take a break, sometimes with an incentive (m&ms work wonders), before we get back to work again.

Most of the teachers at his new school get it.  They are willing to teach him according to how he learns.  They are patient and understanding, and willing to listen to suggestions.  We are very lucky, and I am so glad I was able to work so hard to get him placed in this school.  It has meant a world of difference to The Boy.  He is happier, I think, because he is more understood.

I communicate with his teachers as needed, and never too much.  I do not get in their faces when there is an issue.  I offer suggestions when they are asked for.  I work with my son on his schoolwork and practicing whenever he has it.

My son has special needs.  My son has rights.  My son has patient and understanding teachers (mostly).  My son has me.

Winter at the Beach

Band Woes Again

tuba practiceThings are going very well at The Boy’s school.  Last week we got a note home that he had placed 2nd in his class in a pyramid game (whatever that was), and had earned a 100% on a social studies test.  I reflected that even though he doesn’t have hours of homework a night like he did at his previous school, he still seems to be learning the material – they must be doing things right.

I also got a note from The Boy’s band teacher wondering why he hadn’t been able to play his test for his teacher.  I hadn’t known there was a test, and hadn’t even known they had moved on from some small ensemble material they had been playing before and after break.  At the time, I explained to his teacher that I was very ill, but could The Boy play it next week, so I could have some time to work on it with him.

And then the poop hit the fan.

We practiced it once on Sunday, the first day I really felt human again.  And we took Monday night off (we generally practice every other night or so).  Yesterday, I start to get some emails from the band teacher which seemed to suggest The Boy is incapable of playing the test.  He got upset with me when I told him we had only practiced the test once.  He suggested maybe The Boy should play trumpet, because he’s had other kids with autism have some luck with that instrument…

Here we go again.

I’m disheartened that teachers doing what I used to do seem incapable of thinking outside the box to include students with special needs.  They seem not to have a clue that IEPs apply to them, as well.  And to have a parent like me as a resource in educating their student, and to almost disregard it…

I’m the one who’s at a loss.

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. ❤

The Man for The Boy

This morning, The Boy’s transport van was ten minutes early.  If you know nothing about autism, you probably still know that routines are king, and if you mess with a routine… Well, watch out.

I heard the first honk at 6:38am.  The Boy had just decided he didn’t want to wear the pants we had chosen, but wanted to wear the blue ones.  I frantically searched for the blue ones, found them, gave them to him and he said, “Their inside out!”  I quickly turned them right side out, handed them to him and asked him to put them on, while I found a pair of socks to put on his feet myself.  That done, I headed to the front door, opened it, and stuck out a finger (no, not that one, although I was tempted), to let her know we had heard her and were coming as quick as we could.

I returned to The Boy’s room, and told him to go put his shoes on.  I grabbed his poptarts in a baggie, and his bookbag, and tried to hurry him out the door.  “Where are my glasses?” he wailed.  I set everything down, and went into his room to get his glasses.

She honked again.

Really?  Did you think I didn’t know you were there?  I already came outside in my robe to let you know we were coming, but you needed to honk again?

I gave him his glasses, gathered all of his things, and shooed him toward the door.  “I need you to tie my pants!  You’re not going to tie my pants?”  I got him on the porch, gave him his things and tied the drawstring on his pants.  I gave him a kiss and sent him on his way.

When I came in, The Man said, “Really?  Why was she so early, and why did she have to honk twice?”  Exactly.  “You need to call them and tell them they can’t do that to him.  He needs his routine, and they definitely don’t need to be honking like that.”

The Man advocating for The Boy.

Not just supporting me, because he knew I was a bit frantic and anxious from the situation the driver created (which he did, as well, asking more than once if I was OK), but actually defending and advocating for The Boy.

Exactly.

On the dunes

First Day Report

The Boy had a great first day.  I received a note in his planner reporting on it, and an email from his new band teacher saying he did very well, and pointing out that we could work on the rests (and listen to recordings of the tunes on the band’s website).

Tuba with four rotary valves.

Just like The Boy’s but his would never, ever be found on the ground like that!

This, THIS is what I’ve been looking for.  The Boy had a communication log in elementary, and while I know that middle school is different, this communication about his day is essential to me if I want to know what’s going on.  He did struggle in social studies today (of course!), and I’m not sure what that means yet, but we’ll figure it out and get him there.He was super excited to be at his new school, and to ride the van that is his transportation to and from school.  He gets to go directly to Grammy and Poppy’s house after school, and everything in that arena worked just as it should.  Longer rides, but he isn’t the only kid in the van, and The Boy seemed happy.

I’m happy.

I think this just might work.