Great Expectations

I made it all the way through three weeks worth of school without exploding.  Sure, I would've liked to extend that time by just a bit.  However, when an innocent question leads to an unsatisfactory answer, my Mama hackles go up and I growl.  Loudly.  Let me explain.

The classrooms in Brandon's school are ungraded, but by age he would be in the 4th grade.  His school has an annual back to school night.  Due to a client event, I couldn't attend, and I arranged to meet his teacher on another morning, before school.  We met, I met the assistants and his new OT, I saw the classroom.  All was well.  Then I asked what literacy and math levels Brandon had been grouped into.  Silly me, I thought I knew the answer; I was just checking.  Good thing.  He had been placed in level three math (which I had expected)...and level three literacy.  Um, what? No.  No, no, no, no and no.

Brandon has been reading since he's three years old, and he has always been ahead of his peers in literacy.  His second grade year was a disaster, however, with Brandon struggling with as yet undiagnosed ADHD, and very little learning being accomplished.  He spent more time outside the classroom struggling to self-regulate than in it.  In order to work on his frustration tolerance and boost his self confidence, we made a group choice to have him repeat level two math and level three literacy last year, in a 1:1 setting.  It worked beautifully; Brandon actually accomplished a full year's worth of math, a subject that used to provoke a meltdown by it's mere mention.  Having been told how well he was doing in literacy, I assumed the same of that.  Yeah, I know what they say about assuming things.  What can I say, I had gotten a little too comfortable with my kid actually being happy about academics.  

I exploded.  No way should my boy have been assigned to level three literacy for the third year in a row.  

So, why the level three literacy then?  Well, apparently that was at least partially an oversight.  The group had actually almost completed the level over the summer, and until I got my hackles up, no one took note of this.  OK, even in good schools stuff happens.  I could have rolled with that one, albeit with a lot of grumbling and general pissed-off-ness on my part.  It was the part where they cited his behavioral protocol needs and inability to write that got to me.

Brandon's ability to work in a group is tenuous and newly emerging, but something he himself now desires.  To help foster that, he was introduced to a literacy group over the summer, with a behavioral protocol.  It works like this:  for every minute he is able to attend without off-topic interrupting, he gets a token (in his case, it's a penguin icon.)  After he earns three of them, he gets a brief break and reward, then goes back to the group.  This year, he's so far been able to increase the time to three minute intervals.  To be sure, this reward system takes up a not insignificant amount of adult time, and also causes a certain level of disruption. However, it has NOTHING to do with his level of academic functioning.  

Brandon also can't write.  He has had significant fine motor skill issues all his life, and it is apparent at this point that writing will never be his primary mode of communication.  By fourth grade though, literacy starts to involve a lot more writing.  Brandon's writing challenges are not new.  They have ALWAYS existed.  So...are we going to hold him back for that?  What happens when he still can't write next year?  The year after that?  Are we going to hold him back indefinitely until he can type fluently?  What if that doesn't happen for another year or two?

HELL NO!  I'm not unrealistic.  I know my baby has a long, long way to go.  He's not getting there with low expectations though.  I don't know if Brandon will be capable of college.  I don't even know if he will *want* to go to college.  What I want is the possibility of that for him.  My vision of the future includes one where Brandon has choices.  And he's certainly not getting there if we can't see past the behaviors and the sensory issues and the physical challenges to the very real, very bright boy underneath who will only go as far as we expect him to.  It's time to stop making excuses and doing what's easy.  IDEA says nothing about easy; it says "appropriate".  It's time to raise expectations, and stand back and give him wings to fly with.  It won't be easy, but I'm betting he finds a way to touch that sky.

The Cure! I've Found It!

Let me just get this out of the way and say "Yes, that is meant to be tongue in cheek."  

Autism has been a part of Brandon's life, and by extension mine, for 7 &1/2 years now.  This also means that first NAAR and later Autism Speaks have been part of my life for around 7 years now.  I will admit that, in the beginning, I wanted a cure.  I haven't met a parent yet that didn't start out in that place.  Eventually I got around to defining what I personally meant by the word "cure".  What I wanted was the keys to my son's kingdom, as it were.  I wanted to understand what things made his ears hurt.  I wanted to know what type of classroom he would learn best in.  I wanted to know what caused anxiety for him.  What made him frustrated, angry, and why.  I wanted to have a "real" conversation him.  I wanted appropriate supports and services, so he could succeed.  In the end, what I wanted wasn't really a cure at all.  I wanted a way to ensure a good quality of life for him, which is not even close to the same thing.  

Like most parents of an ASD kid, I've seen Brandon show all sorts of behaviors I didn't understand.  I've been *that* parent, at the other end of a phone from my son's school, trying to figure out why he hit, or bit, or overturned a desk, wondering how if the professionals didn't have an answer I was supposed to find one.  I was determined to try though.

In the trying, I discovered the adult self-advocate community.  I learned that "cure" is very much a four letter epithet for many of them.  I also learned how very much they had to say and to share with NT parents, and how many of them are willing if we would just listen.  I didn't learn what things hurt Brandon's ears, but I learned not to be embarrassed by carrying noise canceling headphones around (heck, I've even used them myself once or twice.)  I learned he got frustrated and angry because the world looks so very different to him than it does to me, and that if I just take a few minutes to help bridge the gap, there is a lot less frustration and anger.  I learned that what I thought of as appropriate supports and what an autistic thinks of as appropriate supports could be miles apart.  I learned that a lazy Saturday at home every once in a while, in pajamas, in his room with his computer, books, and stuffed animals with the door closed allows him to reset himself and ensures smoother days ahead.  Best of all, I learned how to talk with him.   You see, "real" is a matter of perspective.  The things Brandon wants to talk about are very real to him, and important.  When I finally stopped to dignify that, he did, in fact, start talking about the things that were real to me.  I've always loved my son, but now I get to enjoy him too.  He's whole, as is.  I've found the cure.  It's not Brandon that needed to be fixed - it was me.  

I'm not going to claim that every day is a picnic.  We still have plenty of tough times together, when my NT perspective and context get in the way of understanding his autistic perspective and context.  I'm also a parent, and he's a kid, and he does plenty of things every kid does that invoke the wrath of parenthood.  

I'm also not going to claim that autism is always a blessing.  I'm not Pollyana, and some days it's a right pain in the ass.  I don't enjoy seeing my son struggle.  I don't enjoy the constant need to focus on Brandon's deficits in order to justify his services.  There are some days where I fail miserably at bridging the gap between us, and one of both of us ends up in tears.  But none of these things ARE my son, and they are my problems, not his.  

If you're familiar with Autism Speaks at all, then you also know this growth comes at a price.  You see, I no longer like the word "cure" either.  My son is not a tragedy, and he doesn't need to be cured.  What he needs is to come of age in a world that is ready to accept him.  It's a tall order.  You see, if the "nation's leading science and advocacy organization" can't accept him as is, how can we ask anyone else to?

I've been asked why I still volunteer for them.  I still believe in the research, because I believe that for some of the symptoms of autism, we can find ways of making it better.  I believe in the advocacy work that goes on in the national arena.  I believe that in the next few years you will see them focus much more on adult research and adult quality of life issues.  I believe that if people like me say it enough times, and say it loudly enough, that they will understand that in so many ways the cure they're looking for is right in front of them, if only they would listen to the adult self-advocates.  It doesn't matter if what they has to say comes from their mouth, their computer, their iPad, or their Dynavox.  

Self-advocates speak.  It's long past time to listen.

My Son, the Ornithologist

If you're the parent/friend of parent/family member of an autistic child, and you have a sense of humor, you recognize that our children are frequently quite funny.  If you are the parent/friend of parent/family member of an autistic child and you don't have a sense of humor then, well...this blog post is probably not for you.

On our aforementioned vacation, we did go other places besides Sesame Place.  One of them was the Academy of Natural Sciences in Philadelphia.  Really neat place for science and nature loving kids, kind of like they took the American Museum of Natural History and shrunk it, except without the crowds and lots of really helpful people to tell you about the exhibits.  

I also may have mentioned once or twice Brandon's love of animals.  Particularly penguins.

By one of the exhibits was a lovely young woman, equipped with a set of bird feathers and bird bones, all ready to talk birds with the kids.  Brandon sat down, and they examined the feathers together, discussing the shape and feel.  Then they got to the bones.  The conversation went something like this:

Woman:  "Pick up the bones.  Feel how light they are?"
Brandon: "Yes."
Woman:  "That's because they're hollow.  All birds have hallow bones.  That's so they can fly."
Brandon: "All birds don't have hollow bones."
Woman: "Yes they do.  What bird doesn't have hollow bones?"
Brandon: "Penguins don't have hollow bones."
Woman: (Looks at Brandon.  Doesn't have a clue how to respond.)

Helpful parent that I am, I walked away so I could get hysterical laughing somewhere not directly in front of her.  

In case you're wondering, or you haven't already gone to Google to fact check (and if you have, congratulations - it's more than our politicians are doing!), he's correct.  He also informed us on the car ride home that kiwis, emus, ostriches, and road runners don't fly, and also don't have hollow bones.  We never did establish whether or not road runners actually say "Beep!  Beep!" though.

I love this boy.  I particularly love that he's capable of giving us the type of moments that all kids do, where they are unintentionally hilarious just by being themselves.

And if you're one of those parents/friends/family members of a child with autism that think nothing about autism is funny?  Loosen up a little bit.  Look for these moments.  Both of you will be a whole lot happier for it.  

Elmo's World

Hi there - sorry for the long absence, but I've been on vacation.  Betcha' can't guess from the title where I went ;0)

Summer is, historically, difficult for Brandon.  He has periods of being out of school, and even his six weeks in school are different - different schedule, different activities, different staff members.  Cady is in camp until the end of August, so we don't get to go on vacation as a family until the very last week before school starts again - which means we always go on vacation when Brandon is already many weeks into struggling with different.  Our vacations are a learning experience. Progress is measured in shorter/fewer meltdowns; in Danny and I feeling somewhat less exhausted when we return home.

Sesame Place has particular significance for me.  We've been there multiple times, starting when Brandon was three.  That first trip was wonderful - Brandon went on the rides, played in the water, hugged the characters.  He loved every minute of it.

Fast forward three years.  Brandon didn't want to go near any of the characters; he screamed if we tried.  He would only go on a few rides, and he mostly wanted to play in the sand and the tidal wave pool.  He was still enjoying himself, but was much more limited in where he would go and what he would do.

Fast forward another two years.  Brandon didn't want to go on anything; he just wanted to go straight to the tidal wave pool.  Trying to get him involved in anything else resulted in huge, hysterical, aggressive meltdowns.  Danny and I split up, so that Cady could spend time in the rest of the park.  We spent very little time with all four of us together.  It was, frankly, one of the lowest points in my parenting history for me.  I spent most of the time in the park near tears, wondering how and when Brandon had become so rigid.  Nowhere else was the evolution of Brandon from a relatively flexible child to a child bound by the fears and anxieties unique to his brain so starkly clear.

Of course, I hadn't yet learned the crucial questions to be asking.  I was still wondering how to "fix" this, how to make Brandon less rigid.  It wasn't until shortly before we left for vacation this year that I stumbled across the FaceBook page of Karla Fisher (Karla's ASD Page).  For the first time, I learned to ask myself the right questions:  How can we best support Brandon so that he - and by extension the rest of us - has a good time?  What things are truly important, and what things that we ask of him simply siphon off energy that he could be putting to better use elsewhere?  How much can he reasonably handle in any given day, and where are we prepared to adjust if need be?

Our vacation wasn't perfect, but it was so much better.  And the very best day of it?  

You've got it.  Sesame Place.

We were able to coax Brandon on to most of the rides.  We have character pictures with all of us for the first time in six years.  We sat and watched the parade, more than once.  Meals were reasonably pleasant (well, as pleasant as they get in an amusement park fast food place.)  Best of all, we stayed together as a family almost all day, from 11:30 until 4:30, and then we only split up for an hour.  Brandon spent it in his beloved tidal wave pool, and Cady and I took on the water slides that Brandon's swimming skills aren't strong enough for.  This time, the tears were from sheer happiness.  

What changed?  Well, both of us, really.  Brandon has matured this past year, and grown bolder in ways that I used to pray for.  He is also communicating more, so I'm guessing less at what he is thinking.  For my part, I've started to adopt a "less is more" way of thinking.  A shorter, successful day is worth more to me than a longer one ending in a meltdown.  We ate dinner in the park instead of at a restaurant, which seemed to solve multiple end of day issues.  I'm learning to read Brandon's cues better, to know when he can be pushed just a little bit past his comfort zone, and when we've reached a hard limit.  I've learned to find ways to try and ensure Brandon's success.  

Sesame Street is a place of learning for young children.  Given that I'm in my infancy of learning how to truly understand my son, it is just so appropriate that our first breakthrough together would happen in Sesame Place.  I'm looking forward to so very many more.