Author Archives: simpleijustdo

Tuba Update

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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!

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Not Fate But Opportunity

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512px-The_knock_knockI like to think that there’s a reason for the important stuff that happens.  Not the “God doesn’t give you what you can’t handle” garbage, because there are lots of people who can’t handle what they’re given.  But I like to think that when you are open to opportunity, there’s a hell of a lot of coincidence out there to take advantage of.

My background as a teacher has always helped me be a better parent to The Boy.  My background as a band director is helping me fight for my son’s rights as I write this.  Even my first crappy marriage has made me a better wife the second time around.

Tonight, I became the lynch pin, the go-between for my autism society friends and my boss’s wife who owns a local restaurant and offered for them to have fundraisers at her place.  And it was so coincidental, and so much good came of this chance meeting of people who happened to know me… There are times when nothing seems random, yet we seem so incredibly lucky.

It’s times like these when I feel like I am contributing something good and important to the world, even though I am not as nobly employed as I used to be.  I’m building a network of good people who can help each other out, and have a direct positive impact on everyone in our community.  It’s a rare thing, but it’s starting to happen… I love opportunity!

Buddies

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The Boy has always relished the attention that The Man has given to him without a thought, most likely because his own dad doesn’t give him the time of day, even in the one week of the year (or less) that he sees him.  The Man was the one to teach The Boy how to ride his bike, and The Man will be the one that shows him how to shave.  He is constantly creating teachable moments with The Boy, and doesn’t hesitate to take him to the hardware store or the convenience store for a little hang-out time.  This morning, he suggested The Boy start his truck while he started my car for me (ice and sleet having covered our windshields, and not having an ice scraper because the old one got busted in the last ice storm).  It pretty much made The Boy’s day.

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Tonight, The Man and The Boy had a wrestling match, which they do a couple of nights a week – we use it as a reward, and The Boy adores the sensory input and the bonding.  Later on, he came out of his room and sat with us (an unusual occurrence), and it was a wonderful family moment, giggling and laughing as I asked yes or no questions and they controlled eachother’s heads to nod yes or no in answer.  And he chose to stay to watch some skiing with us, cuddling up to his stepdad on the end of the couch.  And he even invited The Man to have a sleepover in the family room with him tonight since he has a snow day tomorrow…  The Man has fallen asleep, but The Boy is still there cuddled up to him, enjoying having a real dad for the first time in his life.

The Problem with a Spectrum Disorder

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Spectrum4websiteEval“The difference between ‘high functioning’ and ‘low functioning’:high functioning may mean your child’s deficits are ignored and low functioning may mean that your child’s assets may be ignored.  It is our job to educate and make the community aware of our child’s strengths.  Inspire others to do the same.”

Picked this up on facebook (someone point out the original attribute if you know).  These “functioning” classifications have always irked me a bit, but in spite of that, part of me says, “Hell, yes!  This is the truth!”  And I suppose it is for many on the spectrum who are clearly “high functioning” and many who are clearly “low functioning.”  It’s a paradox for kids (and adults) who “pass” for neurotypical – People see no tangible issues and have expectations that can be unreasonably high, as well as for kids (and adults) who clearly have issues, and as a result people have expectations that are unreasonably low.

The other part of me says, “And the kids who are in between are the most misunderstood,” because that is The Boy, and he is misunderstood.  He’s bright and clever, and with proper supports, is very capable of A level work in school.  But he needs the supports, and is a good bit away from “passing” for neurotypical.  People see his issues, and have no idea what to expect.

Here’re my two cents: While it is important to enlighten the community about typical behaviors, commonly used strategies, and the like, we must also hammer home that every child has different strengths and “areas of opportunity” – nothing is as it seems.  No child on the spectrum is what you expect, and only by getting to know each individual will you begin to understand them, their struggles, their triumphs, and their potential.

Tightly Wound Today

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I’m aggravated.  Today was A MONDAY at work, and the boss was aggravated, making everyone else aggravated.  And I keep spelling aggravated wrong… seriously.  It has been A. DAY.  I am so glad it is almost over.

So how do you let go when you get wound up?  It’s not fair to your family to sit and seethe all evening long.  The whole reason we work is so that we can support our families, but if we don’t also get to enjoy them, it isn’t worth it.

Here are some things that work for me:

  1. Breathe.  You think you are, but you’re not.  You are taking little tiny shallow breaths that don’t even come close to filling up your lung capacity.  Try it.  Take a deep breath and let it out slowly.  Amazing how much better you feel, huh?  Our brains need oxygen, and they feel better when they are getting a good and steady supply.  Those tiny little breaths we slip into just don’t cut it.
  2. Take a moment to un-clench.  Many, many times when I do this, I can only imagine what I looked like before taking deep breaths and un-clenching – my shoulders must have been up around my ears!  No wonder I get killer  shoulder/neck/headaches…  I read somewhere to think of yourself as an unwinding spool of thread when you want to unwind – go figure!  Try it.  It works for me.
  3. Laugh.  Go back and look at the photos you’ve taken with your phone, go to a funny website that has been proven to make you laugh out loud (damnyouautocorrect or cakewrecks work for me!), or watch something light and funny like AFV (America’s Funniest Home Videos).  After you’ve been giggling for a bit, you will find yourself naturally breathing deeper and un-clenching, i.e. letting go of the stress.
  4. Treat yourself well.  Tell yourself it’s OK to be aggravated (nope, still spelled it wrong) or stressed, but that whatever’s on your mind can wait until you get back to work (or the aggravating situation).  And then eat a piece of chocolate, give yourself a mini-hand massage, or close the door and be by yourself for a few minutes (always a treat in my house!).  You work hard, and you deserve to be rewarded for it.
  5. Talk about it with your spouse or a good friend.  Getting support from the people who mean the most to you will take the sting out of your stress, I promise.  But don’t dwell on it.  Let it out, and let it go.

These are already helping me, tonight.  What works for you?  Let us know in the comments.

Yes, please...

Yes, please…

A Peek Into Their World

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Lawson's_JournalYesterday, we had an informal parent meeting with the teacher of The Boy’s program and the county autism specialist to check in, and give some feedback about the program so they can satisfy their grant requirements.  Everyone was very pleased, and remarked at what a haven they have created for our boys, and how thankful we were for the program’s existence.  The teacher then told us we could look at our kids’ binders where they keep their journal writing related to their social skills class.  The Boy hasn’t done much of this because he is the only 6th grader in the program, and therefore doesn’t have much of a social skills class, but the other parents were like little children on Christmas, “Can we really look in their binders??”  I watched as they read the entries, pointing out certain phrases to their spouses, all the while reading like they wanted to get to the end of the book before lights out.  For parents who don’t often get verbal communication from our kiddos, this opportunity was an incredibly valuable peek into their world.

I’m so thankful for special education teachers who know what their doing, programs that provide what our kiddos need, and opportunities to connect with our boys, even indirectly.

Out of Sync

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I find myself really empathizing with The Boy this week.  My post yesterday highlighted how important it is to have something that helps you calm down when you get ramped up, and I’ve been ramped up since Monday morning.  Along with that, my routine has been blown to smithereens in the past week.

You see, today should be the weekend.

256px-Less_busy_desk_red.svgI have worked everyday since last Friday, and by my calculations, in a normal workweek of five days on, two days off, today would be an off day.  But it’s not, and I am all discombobulated, and out of sync.  I have three more days of work until the weekend, and if I am able to keep from snapping at someone at work, it will be a miracle.  It’s a busy time for my closest colleague, as her half of the business has a big roll-out at the end of next week, and right now we are all chipping in to help it happen, even though we have plenty on our side to do, as well.  And then you throw in the drama of one of your underlings blaming you for a mistake she made and referring to you as a “dumbass” to the boss…

Anywho… I’ve been “on” and working hard for a full work week, and feeling like I need a break.  Again, like our kiddos, trying to adjust to a change in my schedule, managing my emotions while desperately needing some down time.  A good reminder how tough it can be for our children on the spectrum.

Managing My Own Anger

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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?

What’re You Up To?

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I am spending yet another day at home, when we every clearly could be at work today.  Third day home means another day of no pay, and three times as much work waiting for me when I get back.  I’m not a happy camper.  Our high will be in the 40s today, and the 50s tomorrow, so we continue to wait, I guess.  And I will be working all weekend to make up for it, but jeesh…

So today, I am:

  • feeling: irritated by the weather, by being cooped up again, by having so much work that could be done that is now waiting for me, ready to pounce the minute I get back (ugh!)
  • missing: my mom and dad, friends from work (The Boy is at Grammy’s today, so I may head over there later…)
  • reading: Maya’s Notebook by Isabel Allende and The Hobbit by Tolkien (I don’t usually read more than one at a time, but I’m not doing as much reading as I used to, so…)
  • worrying about: tubas, taxes, and tires and other things which need to be paid for
  • eating: not much – never do when I’m alone
  • looking forward to: temps in the 60s this weekend, even if it’s rainy, dinner with my parents tomorrow night (Stouffer’s lasagna – yum!)
  • playing: hidden object games
  • thankful for: not being in the mess in Atlanta, and not losing power in this storm

What are you all up to today?