First Visitation in a Year

Saturday, we hope to take The Boy to meet his dad so that he can spend the week with him.  He hasn’t seen his dad since last March, last spring break.

countdownThe Boy is excited, especially knowing that his dad has a new puppy to meet and a new car over which to obsess.  I am happy that he is excited, and happy that his dad seems to be making an effort this time around.  But, as always, it is with guarded optimism.  The Boy has been hurt too many times for me to blindly accept that all is sunshine and lollipops.  I won’t trust that this all will happen as planned until we actually see his dad on Saturday.  And not for one second do I believe that there won’t be an impact after Spring Break.

Even when trips like this have gone well in the past, there has always been an adjustment back tour normal routine, household rules, and expectations.  And I am preparing everyone here that hasn’t experienced this first-hand before.  The Man says he understands and is ready, as do his teachers – I have prepared everyone to the best of my ability for the inevitable transition that will occur when he returns.

And if it doesn’t go well, or doesn’t go at all, it’s a whole ‘nother story, as you can imagine.

But right now, we are cautiously optimistic, glad to see The Boy’s excitement, and holding our breath for now.

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).

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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.

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.

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.

 

 

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.

He’s Baaaack…

I have a sneaking suspicion that the ex and his girlfriend broke up, because he’s decided to remember he has a son of his own.  He texted me in the middle of the week, saying he was sorry he was behind on child support, but that he’s been laid off, and would make a payment by the end of the week, oh, and he’s definitely a go for Easter, and could he call Thursday?

Sure, I replied.

Thursday evening rolled around, and another text that said he was still at work, and could he call Friday instead.

Sure, I replied.

He called while we were out to dinner, and I missed it, so I called him back before he could get to The Boy and start making promises that I would have to deal with when they were broken.

He laid out his plans for picking up The Boy for Easter Break, and didn’t ask for too much travel on our end.  He went on to talk about us bringing The Boy to Florida in May, because he has a friend who works at Discovery Cove, and could get us in free to every park in Orlando.  He suggested The Man and I come, too, and hang out with them for a couple of days if we wanted…

I told him I’d check the school calendar.

When he finally called to talk to The Boy on Saturday, I told him he could talk about Easter Break, but not to mention the other plans until they were more firm.

The unfortunate reality is that even positive contact with his dad has an impact on The Boy.  We are now bracing ourselves and warning his teachers, who have never experienced The Boy post-visit-to-dad’s.

And it has already begun. The slightest up-tick in defiance and rigidity, the constant fear of being left behind… All of the old emotions (and negative behaviors) return with a phone call and a promise.

The ex will never understand his own power.

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Instruction Manual

By Mestigoit

Whenever the ex re-enters The Boy’s life, I feel like he needs a new instruction manual. He doesn’t communicate all that regularly with him, and even then asks open-ended questions, which are difficult for those in the spectrum. I had to interrupt, get on the phone and remind him that yes or no questions work better and to keep trying when he spoke to The Boy this weekend, because I could hear the frustration in his voice, and could tell he was getting ready to quit trying to engage him in conversation.

When he goes to visit him in April, what will they talk about? He has no idea what The Boy’s interests are, or his friend’s names, or how he likes to spend his time.

Does he remember that he needs time for transitions? Does he remember that raising your voice is risky? Does he have any idea what he likes to eat?

No, he doesn’t. Because that’s what happens when you don’t see your kid for an entire year, and only attempt to talk to him every six weeks or so. That is what happens when you don’t have a relationship with someone on the spectrum.

I worry, but there’s not much I can do. There’s no instruction manual for any of us. Much of parenting is figuring it all out as you go along. Some of us have figured out that building a strong relationship with our kiddos makes things so much easier. Others of us haven’t figured that out yet.

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.