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.

Headaches, Deadlines, and Change

Yes, I am still alive.

Due to pollen and week-long headaches that eventually turn into migraines, deadlines for taxes and healthcare and other bureaucratic things, and CHANGE – the ultimate anathema to an autism household, my plans for blogging fabulousness have gone awry.  But isn’t that just the way things go?  “Life is what happens to you while your busy making other plans,” or so said John Lennon, and I tend to agree.

Mid-week crankiness and crabbiness and the to-do list that isn’t getting quite to-done have left my head spinning.  And so, I make sure there is food in the fridge, not-too-dirty clothes in proximity, and we hang on by our fingernails until the weekend.

I may get time to write tomorrow, and I may not.  I apologize and thank you for your patience.

Life is happening.

Schedule Changes

DSC01701Spring has sprung where we live, and we have been enjoying some unseasonably warm days.  The Boy begins 4th quarter at school, and next week, I begin my summer schedule at work, thanks to an uptick in tourists in the area.

I look forward to this change in schedule, as I will be done with my work day at 3pm, meaning I have plenty of time left in my day to enjoy the weather, run errands, blog…  Yes!  I will finally have a little more time in my schedule to blog, which has been intermittent lately (I know!).  I will also get some much craved alone-time back in my schedule, as well as time with The Boy and my parents.

It will also be my first full-time working summer since… forever.  But I love my job so much, I think I’ll be OK with it.  And the schedule I’m working will give me plenty of down-time.

The not-so-great part is that The Man begins to work longer hours as the days get longer.  But we will be sure to make the most of our weekends, for sure.

What changes are in the wind for you?  What are you looking forward to?

Words Matter: Autism Awareness Day

Today is Autism Awareness Day.  It is a day to celebrate everyone touched by autism, and to increase awareness about autism.  Not “of autism,” but “about autism.”  Increasingly I have seen and heard people in our community dismiss “awareness” in favor of “acceptance”.  I don’t think anyone can argue against acceptance.  But I don’t entirely understand the dismissal of awareness altogether.

If everyone was “aware” of autism, my child’s band director may have been more open to his needs, and may not have decided that he needed to switch instruments or quit band.  If my son’s first social studies teacher of the year was “aware” of autism, she may not have decided on the second day of class that he needed to be in the special ed room instead of her class.  Even I continue to become “aware” of better ways to handle certain situations and behaviors in relation to my son’s autism.  So I don’t think we’re “done” with “awareness,” or that we are ready to “forget” it in favor of acceptance.

I think sometimes we get so wrapped up in our own little community bubble that we think everyone is “aware” but it just isn’t true.  Yes, acceptance is our ultimate goal, but we cannot get there without first helping others to understand the many facets of autism, through awareness campaigns.

People in our community are also upset, saying “Autism doesn’t only ‘happen’ in April,” which is silly.  Do any other communities of those with medical conditions get upset that they have a nationally recognized month which brings awareness to their fundraising efforts?  No one thinks it only happens for a month, but in all reality, it slips out of people’s consciousness after the month is over unless they are touched by autism somehow, and until they experience autism first-hand at a restaurant,  mall or other public venue, or at a get-together in the neighborhood or dinner at a friend’s house.  And then, because of Autism Awareness month, they may remember that what they are seeing may not be a tantrum from a spoiled child, or the bizarre actions of some weird kid.  “Oh yeah, he may have autism,” they may think, and react with compassion instead of condemnation.

Awareness. Acceptance. Awareness Day. Awareness Month.  Words do matter, and another word that is tossed around and shouldn’t be is “epidemic,” which signifies that autism is a disease, which it is not.  The new numbers released by the CDC are interesting, but not worthy of hysteria.  It simply puts an exclamation point on the need for more research, and more services for those with autism of all ages.

So happy Autism Awareness Day and Month.  I hope we reach billions this year, and begin to change hearts and minds which may have been sheltered in ignorance before.  I hope we can work together as a community to see this opportunity for what it is – something still very necessary to reaching our goal of acceptance for those with autism.

Happy teaching.

Standing Up When It’s No Joke

Today I had to say something.

I know it’s different in the South, but really?  How long are we going to let this be an excuse?

At work today (which just blows me away, coming from a work environment where nothing off-color would ever escape my lips, not only because that’s really not me, but also because it would never fly with anyone else), a co-worker used a not uncommon Southern phrase which also happens to be derogatory to an ethnic group.  And then the person she was speaking to repeated it in his response.

I bit my lip, sighed uncomfortably, and tried to focus on my work.

It was said again.  And again, in response.  This happened three or four more times – it almost made me feel like I was getting “punked”, they couldn’t really be saying this same phrase over and over again so many times without it being a parody, right?  Nope.  They were for real, and I was fed up.

“Could we use a different word for that?” I asked.

I was not confrontational, but it was also clear I wasn’t joking.

The first woman immediately said, in a sing-song voice, “Uh-oh!  We’ve offended somebody!  Oh no.  Someone’s offended!”  And I don’t think she meant further offense with this — more of a Southern way of backhandedly telling you you’re overreacting while trying to smooth ruffled feathers, kind of like “Bless your heart!”

The man approached me and asked if I was a member of the slighted ethnic group.  Shocked, I asked, “Do I have to be to be offended?”

“I’m just asking a question!” he responded.  “And I’m just asking a question,” I said.

He went on to say he didn’t think it was offensive, and thankfully left soon after.

I wasn’t intending to be confrontational, just speaking up.  Because it bothered me, and I don’t care if it’s a “Southern” thing.  Truthfully I was more bothered by their responses to being called out for being offensive. It made me feel as if I was somehow in the wrong.  And maybe I am, geographically.

But we can’t accept this anymore.  “It was the way I was brought up,” is no longer an excuse, because you were probably also brought up to not hurt others.  “It’s just a saying down here,” is not OK anymore.

And when you offend someone, you need to say you are sorry, and leave it at that, whether or not you agree with the person who felt offended. Why don’t people get this? It’s not up for debate!  Every single person is different, and has had different experiences and backgrounds.  If you hurt someone enough for them to speak up and tell you to your face, you just end up looking like an ass if you insist you didn’t hurt them.  You may not have intended to, but you did.  Own it, apologize, and change the subject.

Thoughts?

Once You Get to Know Him

IMG_1303Throughout his life, The Boy has attracted a great number of fans.  He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team.  Of course, The Man, The Boy’s grandparents and I adore him, too.  He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities.  And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary.  Everyone knows The Boy.

But usually, it doesn’t start out that way.

Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum.  The very challenges that define the disorder make it difficult for neuro-typical people to get to know him.  They tend to gloss over his human-ness and focus on what he can’t or won’t do for them.  And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.

This is the downward slope upon which we were sliding with his band director.  But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?”  As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.

Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative.  He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”

I will take what I can get – no lie, this is a huge victory for The Boy.  And I absolutely love how loved my boy is.  But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is.  He shouldn’t have to prove it before people will accommodate him.

 

 

On Being “Messy”

by .pst

by .pst

I got a call from my boss when I was out of town at a conference.  He was sitting down at my desk and trying to access something with my login.  When my “desktop” came up, he remarked at how “messy” it was.  It’s really not – it’s organized how I understand it, because it’s not used by anyone else, and I know where everything is located.

The Man has problems with my “messiness” as well, and that’s just how it is.  He is a super neat-freak who has a place for everything and everything is in its place.  He gets upset when a receipt is left on the counter, but he is learning to curb it now that he is sharing living space with me. “I used to be much worse,” he often remarks to me, and I think, “How is that even possible??”

But, I too, have curbed my messiness because I am now sharing space with him.  I live in a neater bedroom than I ever have in my life, as my mom can probably attest.  She used to some in my room periodically and threaten to throw everything on the floor into a garbage bag to be thrown out so that I would clean it up, and I, in turn, used to shove it all into my closet so she would leave me alone.

I must clarify that by messy, I do not mean dirty.

But it bothers me that “messy” is still such a bad thing.  I think it’s a personality trait and organizational style rather than any reflection on a person’s work ethic, as years of societal and motherly admonitions would have you believe.  I do not need others looking down on me because I am not as neat as they would have me be.  It obviously works for me, because I haven’t changed in all my years on the planet.

And apparently, being messy is a sign of a creative mind, not something I would disagree with, nor be ashamed of.  I think we “messy” ones need to be cut some slack, and be allowed to keep our own personal spaces as we wish without fear of being reprimanded or looked down upon.  Just because it’s different doesn’t mean it’s wrong.

Baby Steps with Showering & Autism

The Boy hates to shower.  Well, like most kids he actually loves it once he’s in the water, but absolutely hates the idea of a shower or bath.  Compound that with the fact that he is super-sensitive about his body (i.e. can’t take a shirt off in front of me, and wears hoodies like they’re going out of style, even when it’s warm), and we have a constant battle on our hands to get clean.  And when puberty has hit, it is imperative for a boy his age to get clean, let me tell you.

He has also not had the skills to wash his own hair, which can be quite the challenge when he does everything in his power to hide his body from you.  For a few months, he would take his shower, and then I would wash his hair in the kitchen sink with the sprayer.  This became quite the production.

A few weeks ago, I finally decided to show him how to do this, embarrassment about his body be damned.  And I can tell you, he is learning.  The hardest part is getting him to back up far enough in the shower to get his entire head wet prior to applying the shampoo, and again to get the shampoo out.  I stand at one end of the shower, with the curtain held up so I “can’t see anything,” shouting out directions.  “Back up!  Tilt your head back!  Now turn your head to the right!”  I’m sure The Man is just shaking his head in the family room listening to it all, but it’s a learning process, and how the heck else are we going to do it?  I’ve thought about having him put his swim trunks on so I can climb in with him in my bathing suit, but…  Well, I’m not usually up for that after a long day at work, to be honest.  And besides, I think this is working.

I’ve also told him he needs to start taking more showers a week, because that’s what you have to do when you turn 12-and-a-quarter…

We’re getting there with baby steps, like usual.

The Sightreading of the Parenting World

When I was a band director, it was always expected that I took the bands to “Festival,” which is a nicey-nice term for what it really was – competition.  Ideally, the judges would rate each band according to an ideal, a standard, but in reality, they were comparing your group to the other groups they’d just heard, and would hear after yours, and indeed the phantom college band they had playing in their head at all times, being conducted by some very famous college band director.  And when you were done they would post your scores in the cafeteria, right under the group that had performed before you, and right above the group after you, so everyone could compare…  Yep, it was a competition through and through.

My favorite part as an educator, and my own gauge of my effectiveness as a teacher, though, was sightreading.  This involved taking your group of stage-frightened, stressed-out kids into an unfamiliar band room, and handing them manila envelopes with explicit rules not to touch the envelopes until directed to.  Then, after reading an interminably long page of more rules, the kids and I were able to see the music, and then had seven minutes in which to discuss two pieces of music.  We were not allowed to play a note, just review it together as quickly as possible, and try to catch all of the notes, rhythms, dynamic markings, and other nuances that normally take several months of rehearsal to bring to the stage.  Sometimes we ran out of time and didn’t get through it all.  Sometimes we had time left over.  But when time was up, we played, and were scored on how well we played by the judge.

I often feel like parenting is a lot like being a band director, preparing, rehearsing, going over details until they “get-it,” and then moving on to the next thing.  But that being an autism parent is more like sightreading.  Using all of your knowledge and skills, sometimes in what seems like a very condensed amount of time (because it usually just takes our kids a longer amount of time to do everything), on a stressed-out and overwhelmed kid, and hoping that you’ve done enough for them to be able to apply what you’ve taught them.  There’s a lot of adrenaline and anxiety, and at the end of the day, if you did the best you could do, you take what you’re given, reflect on what could have gone better, and get ready to do it again.

Except band directors (and students) do it once a year.  Autism parents do it every day.

Cheers to all the maestros out there.