Keeping It Real

In almost two years and a lot of infrequent postings, I've shared a fair amount.  I'm no Mary Poppins, but I've mostly shared the lighter side of things.  The victories.  The lessons learned.  The occasional righteous indignation.

I suppose that's less than honest of me.  The truth is, no matter how much I love my kids, some days suck.  Badly.  Today is one of them.

Brandon will move up to middle school this coming fall.  In another world, tomorrow would have been graduation day.  We should have been marking this momentous occasion all year long, as an elementary school senior, with a senior t-shirt and autograph book and yearbook, with a senior trip.  It should be a time for excitement and an awareness of a major milestone achieved.  Today I should have been making sure that cap, gown, and camera are all ready.  

Instead, today I got a phone call that my son bit one of his classmates.  That no matter what cool stuff was going on all day (a trip to a park, ice cream, a school end of year celebration), he could only focus on a set of bird print outs he had brought in and wanted cut out for him.  Today I got a reminder that I've been having a year long battle with his school simply to have him moved up to the upper school classroom in the fall in the first place.  They thought he should stay in the lower school.  I maintained that no matter what they thought, he is certainly aware of what being left back is.  You can sugar coat it any which way - that the classrooms are ungraded and therefore it's not the same thing - but he will understand that his friends moved on, he didn't, and that it amounts to being left back.  Eventually my perspective won.  My perspective doesn't get to walk down an aisle and celebrate that accomplishment.  

I know it's not polite in some autism circles to talk about the hard.  I call bullshit.  I fully understand - and believe it to be true - that most of the hard is not directly autism.  Autism doesn't cause there to be a dearth of good schooling options for kids on the spectrum - bureaucracy does that.  Bureaucracy caused the best choice we could make for Brandon to be a self-contained school with ungraded classrooms that go all the way up through middle school.  Bureaucracy and the paucity of appropriate high school placements may cause us to move Brandon earlier than that, causing us to once again be robbed of a graduation.  Of what for an NT child would be a milestone marked by ceremony.  As a parent, for me, that's hard to swallow.  I shouldn't - and don't - blame any of this on my son or on autism.  But I won't claim that it isn't hard and it doesn't suck.  And I should be allowed to talk about it.  

I realize this pity party is all mine.  My son is just fine with how his day went, biting the classmate notwithstanding.  That's as it should be.  He doesn't need to be aware that I spent all year fighting for his right to move on to middle school.  Or that I'm acutely aware that I will not be at a graduation tomorrow.  These are my fights.

But the truth is, some days suck.  Badly.  Today is one of them.

Warm Fuzzies?

I’ve noticed a trend in the news lately.  It’s a series of “feel good” articles about autism.  You’ve seen them – autistic kids get voted prom king and queen, autistic athlete does good, etc.  The latest one posted by a friend features the story of a small boy in love with garbage trucks that’s become friendly with his local sanitation guy.  Said sanitation guy recently brought him his own toy garbage truck to play with.  Mom happened to be outside taking video that day, and posted it for her friends and family.  Instead, it went viral, and everyone is having the warm fuzzies over it.  Inevitably, being the mom of an autistic child, most of these stories make their way into my Facebook news feed.  Several of them get posted directly to my page. 

Now, I’m a warm and fuzzy kind of gal.  I can “aww”, smile, cry, and get sappy over feel good news with the best of them. 

These articles do not give me the warm fuzzies.  In fact, they kind of make me want to throw up a little.

For those of you now asking, “Who pissed in her coffee this morning?” the answer is no one.  And everyone. 

Here’s my fundamental problem with these stories:  They’re supposed to be shining examples of autism awareness at their finest.  Inclusion done well.  For me, they leave a bad taste in my mouth.  Awareness done right leads to support and true inclusion.  True inclusion is an environment where autistic people are valued for themselves – where there’s a recognition that they bring as much to the table as their NT peers.  It’s not “peer mentorship”, or being buddied up with someone who sees it as their feel good project and a line about how great they are for working with “those kids” on their college resume.  It makes for a really sweet story when a young woman decides that the autistic kid shouldn’t be left out of the prom and offers herself up as his date.  But what happens afterward?  What are you going to say when he calls your house?  Asks you for a date?  Thinks that you’re his friend and wants to hang out with you and your buddies? 

The video of the little boy being given the garbage truck is undeniably sweet.  But what are we saying about the worth of autistic people when something like this goes viral?  In a way, what we’re saying is that we’re all warm and fuzzy because he was noticed.  And I find it terribly, terribly sad that the act of noticing an autistic child – an autistic person of any age - is still news. 

So go ahead and be amazed at the Jason McElwains of the world – their abilities are, indeed, amazing.  I also ask, though, that you think about that story critically.  Would his feat on the basketball court have been seen as so amazing if he hadn’t been identified as autistic?  Isn’t the real story a question of why he was only allowed to play in those few minutes of that single game all year long?  Shouldn’t we be asking why his coach hadn’t been spending all year discovering and developing his talent, instead of praising him for allowing those handful of minutes, only after he was sure that his team was already assured the win? 

Autistic people of all ages, and all abilities, should be noticed.  They should be included.  For themselves – for who they are, as amazing, autistic people, worthy of being known in their own right.  That’s the non-story that I want to see.  That’s when I’ll get the warm fuzzies.  

I Remember

So, a first for this blog:  This post has nothing to do with autism.  It is, of course, September 11th, and I am working in lower Manhattan for the first time in my life.  It's put my brain in a strange place today, and this was the end result.

I remember that we chose to drive into work that day.  It was brilliant and cloudless, an unreal brilliant blue full of longing for childhood days spent out of doors.  I was wearing a skirt with new shoes, honoring the loveliness with my outfit.  We drove through the Battery Tunnel, not knowing that my anal retentive need to be early had delivered us to safety and relatively freed us from chaos. 

I remember my boss asking me if I had heard that a plane had crashed into the World Trade Center.  I gave him my best “WTF” look.  After all, I had just passed by there in the car, maybe 15 minutes earlier.  Minutes later, we would scramble to get to the proper windows when we heard that another plane had hit the second tower.  I went to the bathroom to doctor the back of my new shoes with padding, because they were blistering my feet, too bewildered to make sense of any of it.  Coming back to my desk, my husband was standing there, pushing me to grab my things and GO.  I told him that I couldn’t just walk out of work.  He told me to look around; the rest of the office had already done the same.  I suddenly remembered that my mother worked on the tip of Manhattan and tried to call her.  Of course, there was nothing but a busy signal.  We left. 

I remember he had the presence of mind to stop at an ATM, not knowing how or if banks would be affected.  We walked back to his office, though it probably wasn’t the brightest place to be, located down the block from the UN.  The collective group stood around the large screen TV, watching as smoke, ashes, and people came through the windows.  Watching as the first and then the second tower collapsed.  My brain would not, could not process what it was seeing.  I called my parents and discovered that my father had not heard from my mother; we didn’t know where she was.  Hours later, I thought to check my answering machine, where I found frantic phone calls from my best friend, her mother, and her mother in law, all trying to find me.  Located in Chicago, she could not remember where in Manhattan I worked. 

I remember finally calling her office, and having the receptionist screech, “Oh my gosh, don’t hang up!  I’m going to get her!”  Apparently, *all* of the hospice she worked at was waiting for me to call.  I called my father again, and finally exhaled when he told me that mom had walked across the Brooklyn Bridge, found a safe place to wait, and he was leaving to go get her.  I walked outside into the empty neighborhood and found the only shop still open and bought myself comfortable clothing and sneakers, no longer able to stand being dressed for an ordinary work day.  More hours later we attempted to drive home, only to be caught on the road as building 7 collapsed.  We were herded into Queens, and were lucky enough to have family to stay with overnight.  We called as many friends as we could, reassuring and being reassured that all were safe.  I closed my eyes that night, but did not sleep.

I remember going outside the next day, and the hideously painful sound of a silent New York City.  We finally made our way home through the streets.  I desperately wanted, bone deep needed, my home, my bed, my normal.

I remember the phone call shattering the fragile peace; a friend informing us that his brother in law was missing.  He wasn’t supposed to be at the World Trade Center that day, but somehow he was.  I remember my husband’s irritation that I wouldn’t give up my desperate need to collapse and sleep and go to them.  I remember that I couldn’t find the words to tell him that after hours upon hours of numb, my brain could NOT function anymore, and was protecting itself the only way it could, by forcing me to shut down.  I remember repeating, “I can’t…I just can’t”, over and over again, and failing to bridge that enormous communication gap.  I remember that because I couldn’t, I was alone when the pain and the tears finally hit.  I remember days later, when we all realized that he would never come home again.

I remember the stories that would take hours, days, years to come out.  A friend who should have been on a different PATH train and would have been under the towers.  Someone’s mother, who made it out.  Someone’s boyfriend, who worked for Cantor Fitzgerald.  Ashes that made lower Manhattan a permanent graveyard.

I am working in lower Manhattan today.  I remember.

And Then There Was This

Fair warning:  This post is a hodgepodge of stuff, related only by the fact that it all features my favorite penguin.  Who seems to think he's Scuttle the seagull from "The Little Mermaid" lately, but that's neither here nor there.  It's encouraging him to ask for dinglehoppers to eat his food with, and that's all I care about.  If you're lucky enough for it to have been a decade or two since you've seen "The Little Mermaid", dinglehopper is what Scuttle names a fork.

First, there was a doctor's visit, the usual back to school well visit.  My kids take getting shots and having blood taken about as well as I do, which is why we have a prescription for numbing cream for them.  Cady is so bad that her blood usually needs to be taken in a lab, lying down.   I actually can't go with them to any appointment where blood has to be taken, because I will be lying down next to her, the hard way.  

Geri, our babysitter, broke out the numbing cream, and started to slather it on Cady.  Brandon looked at her and said, "It's OK.  I can handle it without that stuff."  I looked at her...she looked at me...lots of eyebrows got raised...but it was his choice, and we let him do it.  And he did, like a pro.  Both shots were given and blood taken, and there wasn't a peep or a tear out of him.  Two years ago my husband used to have to hold him down for a blood draw to be done.  Normally I make fun of Geri's post doctor visit trip to the store for a Beanie Boo for the kids, but this time that boy earned it (as did Cady, who apparently was still able to feel the shots this time even with the cream.)

Then there were balloons.  At a birthday party.  Where you would expect to be balloons.  Brandon as a very little boy used to love balloons, batting them all over the house.  Geri had a "birthday balloon" tradition, and heaven help her if she forgot the birthday balloon.  It was a national crisis...or at least a local one requiring an immediate trip to the nearest balloon selling store.  Until the day we went to a birthday party and he was suddenly and inexplicable terrified of balloons.  In particular, he is afraid that they will pop, and of course I can't guarantee that won't happen.  Which makes balloons at a birthday party something of a sticky situation.  In fact, just slightly over a month ago we spent a very long hour in Central Park waiting for Danny and some friends to finish a race, stuck in a spot that had not one but two people making balloon animals.  It was a very, very loooooong hour.  

So when we arrived, and I saw the inevitable balloon bouquets, I mentally winced.  Inhaled.  Exhaled.  Noticed that one set of tables didn't have any balloons and mentally marked it as the best place for him to eat his pizza and cake.  And prepared to do my very best balloon reassurance for the next two hours.  

Except that Brandon didn't say anything about the balloons.  Not when he walked in.  Not when he sat near one of the bouquets to eat.  Not until he was given his party favor all the way at the end of the party and very calmly asked for his balloon to be removed from it.  It was a balloon non-event.

Later that night, there was this exchange:
Me (to Brandon): "You know what? I love you."
Brandon: "I already know that."
Me: "Well, I want to make sure you always know that."
Brandon: "Yes, I know."

Could you just?

And then there was food.  Like a lot of people with autism (and a lot of kids in general), Brandon has a really restricted diet.  He's expressed boredom with the same handful of foods, but at the same time is just too anxious to try anything new.  We keep offering, in the hopes that one day he will finally be brave enough to take a bite.  

For summer session, his class theme has been healthy living.  So as a final field trip, they went to the local green market yesterday.  I sent him with a couple of dollars to buy a snack.  Apparently, they were offered peaches to try.  Then Brandon selected a peach for his snack, and, from what I hear, ate it straight down to the pit.  All of which sounds very ordinary...except that Brandon doesn't eat peaches.  He came home all excited about his new snack - "Yeah, they're yummy!" - and had one with his breakfast this morning.  Making me wonder if they sent me home the right kid.  We took advantage and told him about nectarines and how they're similar to peaches, but without the fuzz.  He tried a piece from his teacher this morning and pronounced that yummy too.  I'm still wondering if it's my kid.  It's the first new foods he's tried in, literally, years.

So it's been a weekend of firsts and letting go of anxieties.  I'm curious to see where all of this goes and what other changes it might herald.  It couldn't be happening at a better time; Brandon will be trying mainstream day camp next week for the first time.  It's his first mainstreaming experience ever.   I've got my fingers crossed.  Seems like right now the little miracles are everywhere.

Words Matter

Hello there!  Apologies for the six month hiatus, but I've been unemployed.  It's taken more time and energy to find a job than it does to actually work :0P  Anyhow, happy to be at a new job, and happy to have the energy to be back here.

This post has been three months in the making.  For a long time, I couldn't decide if it truly mattered as much as I thought it did, or if I was being oversensitive.  At the time I also couldn't figure out how to tell this story without directly pointing a finger at someone who meant no harm.  The worst he's guilty of is ignorance and thoughtlessness.  However, two things have occurred over the last few days to convince me that ignorance and thoughtlessness need to be pointed out (one of which I won't be discussing here.)  In the end, words matter.

If you're familiar with the autism community, then you've probably already heard about rapper J.Cole, the song "Jodeci Freestyle", the incredibly insensitive lyrics (and yes, I'm aware the whole song can be construed as offensive, but we're talking autism here), and J.Cole's apology.  If you aren't familiar, you can read the apology here: http://www.dreamvillain.net/autismspeaks/.  The short version is that he hurls the word autistic in his lyrics as a slur, a put down.

The original incident that's been living in my head occurred in April.  Autism awareness month, which made it even more painful.  Add to it that it's a class I attend and cherish for the fact that it's so "other" that it allows me to get outside my head and be something other than mother, wife, employee, something without predetermined parameters for a full two hours almost every week.

We were working on recreating a well known movie fight.  At full speed, it looks fantastic.  At slow speed, one of the characters makes a move that makes absolutely no sense, but if you don't let it happen, you can't get on with the rest of the fight as it's been choreographed.  Two of the guys were demonstrating.  At the point in the fight where that move needs to be made, one of them stopped and said something to the effect of "Yeah, just hold out your arm like that and pretend to be a little autistic."  It was said complete with faces and sound effects.  You know the type.  The type a thoughtless kid would make to denote a mentally incapacitated person, and not in a kind, gentle sort of way.  The first time he said it, I looked at my partner.  She looked back at me, knowing my blood was boiling.  I inhaled.  Exhaled.  Chose to let it pass.  Except then they demonstrated again.  And he made the same comments, and faces, again.  I looked at my partner, and said something to the effect of "If he does that again, I'm going to kill him.  With witnesses.  And I don't care."  And then we both turned around and called him out on it.  He immediately apologized.  

The irony?  I came to this class via a performance they did as a fundraiser for Autism Speaks.  

He apologized again after class.  He was sincere, but also dismissive...he likened it to be called a nickname that he doesn't particularly like.  I let it go, because I knew then that he just wasn't going to get it.  It's not the same, at all.

You see, he doesn't have to justify himself, justify his place in the world, every day.  No one hurls his nickname as an insult or a slur.  His nickname isn't used as a reason for isolation or exclusion.  It's never been used to incite fear.  

It also really got to me that there was this underlying assumption of what autism looks like.  I'm here to tell you folks that autism doesn't automatically "look" like anything in particular.  There are those that are more challenged and need more support.  There are those who are less challenged and need few supports at all. What none of them needs is the preconceived notions of the thoughtless and ignorant, who think that a developmental disability is something it's OK to make derogatory remarks about if it comes from a place of "just kidding."  

Language is powerful.  Words matter.

Gender Bender

Brandon lives in a relatively sheltered world.  He attends a NYS approved non-public school for children on the spectrum, and his entire school day is spent with other children on the spectrum.  I've had my moments of questioning the wisdom of this; after all, he has little exposure to neurotypical peers, or the neurotypical learning experience in general.  Over the past few years though, I've had many occasions to see his class together, and how wonderfully supporting and accepting they are of each other, in all their quirky, autistic glory.  Brandon, on a day to day basis, has never had reason to question any of the things he loves that make him uniquely Brandon.

Brandon has recently fallen irrevocably in love.  It's not the first time.  The current object of his affections happens to be a gloriously red haired mermaid by the name of Ariel.  Yep, Brandon is seriously crushing on the Little Mermaid.  If you look at my last post, you'll see a picture of him snuggling up to the stuffed incarnation of her he received for Christmas.  Ariel has gone to school, several times.  To the best of my knowledge, no one there has ever questioned what a nine year old boy is doing toting around a stuffed mermaid.  She's simply been accepted into the classroom as part of Brandon's richly detailed fantasy play, where he is her friend/suitor, depending upon his mood.

Personally, I'm going with it.  He's found great joy in watching The Little Mermaid, as well as old episodes of the cartoon on the Hub.  He enjoys acting out sea adventures featuring Ariel, and I think, at almost 10, has also found a safe way of trying out what it's like to feel affection for a female.  After all, this is the same kid who greeted me from work the other night by asking, "Hey Mom, want to see what I do to attract the ladies?", and then flipping up his t-shirt to show off his belly.  If my boy wants a pink Little Mermaid birthday party this year, he's getting it, gender roles be damned.

I recently received an ugly reminder that the rest of the world doesn't quite see things this way.  Our babysitter, Geri, was on her way to the dentist with the kids, loaded down with stuffed toys for them.  Dentists are anxiety provoking, so G-d love her, she's willing to tote the entire house full of stuffed animals if they ask her.  On the way to the bus, she bumped into a friend from the PTA at Cady's school.

Each child was holding their new stuffed puppy in a carrying case, so said friend asked where they were going "all dressed up."  Geri explained what they were, and that the kids were toting them to go to the dentist.  The friend looked at Ariel, still in Geri's arms, and asked, "What's that, then?"  "Oh, it's Brandon's", Geri answered, without thinking twice about it.  The friend paused for a moment, then asked, "Isn't that a little g-a-y?"  "It's what he likes", Geri replied.  "Well, shouldn't you redirect...?", said the friend.  "No", Geri firmly replied, and got the kids moving.  When she relayed the story to me later that night, she was *pissed*, with good reason.  Who is this woman to question my sons' choices?  Not to mention the utter disrespect in assuming that Brandon wouldn't understand her spelling, or her words.  What right did this woman have to question anything about him, or to speak about him, in front of him?  More importantly, what right did she have to assume that a choice of a doll inherently is wrong for a boy, or makes him potentially homosexual?  And if he were homosexual, to automatically make the assumption that this is wrong, would somehow make my boy broken in her eyes?

The whole encounter solidified something for me.  We have a long, long way to go people.   Being L, G, B or T is not a choice.  Neither is being autistic.  All are in desperate need of civil rights, of being recognized as, in the immortal words of Temple Grandin, "Different, but not less."  And our world is in desperate need of more open minds.  So the next time you see a boy playing with a mermaid - or a girl playing with a dump truck - try this:  Marvel at their amazing pretend play skills.  Join them in their rich fantasy world.  Just enjoy them for the wonderful, unique human beings they are.

Aye, Aye, Captain

Hi there!  Come a little closer, because I'm going to need you to read something in order for part of this post to make sense.  C'mon, a little bit closer now.  Um, too close.  Your cheek is squished up against the screen.  There, that's better.

It's called The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).  It's a little long, but if we're going to understand each other, I need you to take a minute.  Autistic self-advocate Karla Fisher uses this model, but instead of spoons talks about tokens.  When I say "Brandon was out of tokens", this is what I'm talking about.

You're done?  Great.

On any given day, I have no way of knowing how many tokens Brandon is working with.  There are signs I can look for.  If he's tired, hungry, or sick, there are less tokens available.  If I've gotten a phone call from school that he's had a bad day, I know he's coming home with few tokens left.  If he's spent a lot of time and effort attending, the token stash is being depleted.  Bonus depletion of tokens if he's spent a lot of time attending to a non-preferred activity.  Some days he wakes up with lots of tokens, and handles everything the world throws at him.  Some days the tokens are seriously low before he even leaves the house.  I'm not at a point yet where I'm any good at helping him manage his tokens, but I can recognize when he's low on them.  Rest and self-directed down time help him replenish them.

Saturday we took the kids to the Intrepid.  The Intrepid has a terrific program called Access, with certain groups specific to those with developmental disabilities and their families.  They give a short tour of a select group of artifacts around a theme, and end with a craft activity. This month's theme was superheroes. We've been to the Intrepid several times before, but Brandon usually gravitates toward the one or two things he likes, and then asks to leave.  I thought this might be a chance to broaden his world just a little bit; a chance to make history relevant for him.  I also thought it might be a good way to engage Cady, who gave me *that* look when I told her we were going back to the Intrepid again.  Sometimes, she's got a few too many of my genes.

If you're new to this blog, Brandon has a thing with gift shops.  As in, if he knows the place has one, he MUST GO.  And BUY SOMETHING.  Any trip where we don't plan on visiting the gift shop must be approached with caution.  Xanax probably wouldn't hurt either, but I don't have a current prescription.

Danny intuitively understood that we were asking a lot of Brandon - to go to the Intrepid, but not be self-directed.  He'd have to stay with a group, and attend to the tour as best as he was able.  Knowing that Brandon was going to want the gift shop anyway, he promised him a trip if he tried his best to stay with the group.  Which he did, beautifully, no doubt helped by the toy models that were being used as visual aids.  Which also made him look forward to the gift shop even more.  Which made it suck really, really badly during the crafts activity when we discovered the gift shop was closed.

You'd think we might have checked that, seeing as how NYC was hit by Hurricane Sandy, and the Intrepid is on the water and all.  But no.

You already know there's an epic meltdown on the way here, right?

Brandon lost it.  As in screaming, tears, throwing himself around, the whole nine yards.  It's a rare moment when I'm better equipped to handle a public meltdown than Danny is.  But for once, I got it.  He'd used up all those tokens doing what we'd asked.   Lots of tokens used on the activity meant not enough tokens to cope with the unexpected.

Where am I going with this?  Read the spoon theory again.  Add it to your favorites.  Remember it each and every time you need to advocate for your loved one - not just in the classroom, but in every day life.  Remember it the next time you can't figure out why your loved one could do something yesterday, but can't seem to do it today.  Remember that they can be replenished, but on a day to day basis they're not an infinite resource.  Treasure them - they're the most precious currency in your world now.