Extra-Curricular Activities and the Autistic Child

I read and shared a great article the other day, written by Laura McKenna, entitled, “Our Public Schools Must Be More Autism-Friendly — Here’s Where to Start,” and published on the Pacific Standard Magazine website.  In it, Ms. McKenna highlights ways in which schools could be more inclusive with their extra-curricular offerings.  She makes an excellent point, as may of the kids I know on the spectrum do not participate in clubs and sports, due to the level of social sophistication that is required for inclusion.  But that only allows our children partial access to everything the school experience has to offer.

The Boy and I have made the decision to continue with school band next year.  I have spoken to the band director, and we are going to take a proactive approach, and really monitor what needs to be modified and accommodated for him, even in terms of performances.  I am comfortable with that, and if I ever get uncomfortable with the situation, I can pull The Boy out and continue with private lessons, which was my intention when the whole band debacle went down this winter.  But here’s the thing: I realize now what a social thing school band is, and I understand that this may not work out for The Boy, and that’s OK.  But I still want him to belong to his school community, and if it won’t be through band, then how?

We have mostly stuck with independent stuff like surfing

We have mostly stuck with independent stuff like surfing

When he dropped him off after spring break, his dad told us all about how they played basketball, and The Boy has a great shot.  They also worked on catch, but were not as successful, and they would work on that (uh, right).  Sure, if The Boy has interest in playing sports, we could encourage it, but to what end?  School sports are also social in nature, with the necessity to read cues from teammates and opponents and to quickly interpret them and decide on a course of collective action – a tall order for someone with underdeveloped social instincts and executive processing difficulties.  So he shoots free throws by himself?  Again, how does this help him fit into his school community?

Our local Autism Society Chapter has taken on the challenge to fill this void in our community, and I applaud them for it.  They have been recognized statewide for creating a “Friends, Fun, and Birthday Club” which happens once a month to celebrate all of the kids birthdays that happen that month.  Friends, siblings, and those on the spectrum are all invited – anyone can attend, and since Birthday Parties are kind of a sore spot for the autism community, this meets a very strong need, and is quite successful.

They also have a once-per-month fundraiser at a local pizza restaurant, which has turned out to be a social gathering for the kids on the spectrum and their siblings.  They all sit at the same table, away from their parents, and they bring their DS’s and gameboys and have a good ol’ time.  It is a sight to behold, and I almost get teary-eyed watching them together.

The chapter offers monthly music and art programs for the kids to participate in, too,and again, friends, siblings, and kids on the spectrum are all welcome.

But again, this is all outside of the school community.  Inclusion needs to happen outside of the classroom, as well, and it is high time our schools begin to recognize the void in our kids lives.  Yes, we want to allow them the comfort of being alone, but as adults on the spectrum will tell you, they also want to have friends and be a part of the larger group.  We have to help them do that, and developing programs to address those needs is long past overdue.

I’m off to share this article with my son’s principal…

The Boy is Back

The Boy, still sleeping, catching up from Spring Break at his dad's

The Boy, still sleeping, catching up from Spring Break at his dad’s

The Boy is back and seemingly had a good time.  And I am glad.  I’m glad there were no emergency phone calls asking me what to do because he is having a meltdown.  I’m glad it sounds like they actually spent time together, which hasn’t been the case in the past.  And it’s early days yet, but I’m glad that The Boy seems to be happy to be home, with no lingering ill-effects like cat scratches covering his hands, or a fear of the bathtub.

I am happy to have him back, and I am happy he had a good time.

That does not mean that I trust things with his dad have changed.  While setting up this trip, his dad talked about taking him to Disney in May, because he knows someone who works at Discovery Cove and could get “us” into all the parks for free – you see, he wanted The Man and I to share in this adventure, most likely because he wanted us to drive The Boy down to Orlando to meet him.  I asked him not to mention this idea to The Boy, and told him May wouldn’t work, as The Boy is still in school at that time.  When we met for drop-off, the ex explained that it would have to be postponed, and that the cost of Discovery Cove would be $150 each for he and The Boy, and if The Man and I wanted to go it would cost us $400 a piece, so maybe we wouldn’t want to do that.

So says the ex, who is almost $800 behind in child support.

So you see, I am happy this trip was able to happen.  I am happy The Boy seemed to have a good time.  But not for one second do I think things have really changed.  Not for one second do I believe the ex is done hurting The Boy, albeit unintentionally.  Plans will continue to be cancelled, phone calls left unmade, etcetera, etcetera, etcetera…  Maybe it’s pessimistic, and distrustful, but it’s also evidence-based, and I am too protective a mom to think otherwise.

The Handoff

A co-worker asked how my weekend was, and I think I responded something like, “Meh.”  Because it was a nice weekend, and The Man and had a tiny vacation, but I had to give up The Boy, so there’s that.  The truth is I hate giving him up, but I have an undying hope that he will be able to salvage something of a relationship with his dad at some point, and so I know this is good.  Or has the potential of being good.  But having him gone is like not having an arm for a week.

And so, while the weekend was a nice little getaway, and I could do nothing but smile at The Boy’s insistent questions (“How much longer?  Are we there yet?  I wonder what kind of lights Dad’s new car will have…”) and statements (“I can’t wait to see the new puppy!”), it still just sucks and my emotions are a little raw, a little closer to the surface.  I will (and already do) miss being a mom, at least in the active sense, this week.

Here’s to hoping it goes by quickly, uneventfully, and as painlessly as possible.  Tomorrow’s another day.

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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).

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.