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.

All I Want for Christmas. Or Chanukah. I'm Not Picky.

It's been a long time.  Like a two months long time.  Sorry folks; there's been a lot going on the autism universe, and every time I went to write, I discovered someone else that already had, sounding way better than I ever do.  I think going forward I will post those links here, so I can share even if the words aren't my own.

I know that the holidays have just ended, but here I am, still digesting what lessons this holiday season has brought.  I've had a lot of occasion to think about acceptance this year; not only what it means, but what it looks like.  How to honor that in daily life with Brandon.  It's an ongoing, constant learning process for me, but for the holidays this year, it took the form of presents.

We happen to be a dual holiday household, so there are lots of presents.  Chanukah presents.  Christmas presents.  These are currently the only niece/nephew/grandchildren/I don't have kids of my own and think it's cute to buy for yours presents.  My home looks like a sub-section of Toys R' Us.  As the parent of an ASD child, presents can be anxiety provoking.  Usually for me, not the child in question.  Want to see me look like a deer stuck in headlights?  Ask me what Brandon wants.  The difficulty is not that he doesn't understand that there's a holiday.  Trust me; Saturday morning at 7 am on the first night of Chanukah, sunshine came bursting through the door of my room yelling, "Do you know what today is?!"  Try explaining the concept of a lunar calendar and the holiday not starting until sundown to him.  Go for it.  Let me know if you have any luck, OK?

No, the difficulty is in finding gifts that he's actually going to like.  In the past, this has involved serious guessing on my part.  Unlike other kids, Brandon didn't tell us.  So his gifts were always a mixed bag; lots of books about animals, toys selected to work on specific skills he needs help with, toys that I thought would push him to a more age appropriate level of play, toys that were more of what he already owned, just to make sure there was *something* in there he would like.  Toys that very often spoke more about what I hoped for, what direction I thought he should be growing in, than about who he is or what makes him happy.

Learning to accept Brandon as exactly who he is changes things though.  It has meant listening - really listening - to the logic behind many of his choices.  Understanding that behind his desire to watch his old "Baby Einstein" videos again is really a love of watching the animals, and a love of the classical music it is set to.  Recognizing that his beloved "Sea Rescue" TV show may not be on DVD yet, but there are other Sea World related toys and DVD's that would allow him hours of imaginative play of his favorite sea animal variety.  Throwing out notions of gender specificity in toys and knowing that he wants Disney princess toys, and Ariel in particular, so he can cast himself in the role of prince.  Ariel in particular because, of course, she is the princess of the sea - and she can come on his Sea Rescue adventures with him.  To be fair, we were also gifted with this being the year that Brandon has finally asked for specific toys.  In fact, he has spent many hours trolling both the Amazon and Toys R'Us websites, pulling us into his room to show us what he "wants to buy."

It has also meant advocating for him.  Explaining to family and friends that yes, I know what I've suggested you give him may be unusual.  I understand that the age range on the box may be far under what his actual age is.  But what is that against the look on Brandon's face when he opened his gifts this year and all of them - every single one - got a whispered "yes!" and a look of joy and excitement?  When he opened his stuffed Ariel and actually squealed, then planted a great big kiss on her?  What is any of that when my son felt like his wishes and dreams had been heard and answered?

The real gift, of course, didn't come in a box.  It never does.  Of course, if you've been thinking about this at all, you've also realized that the real gift wasn't for Brandon at all.  It was for me.  In opening my mind to the possibilities of who Brandon is, instead of who I might want him to be or what developmental milestone I think he should be pursuing through play this year, I gained my son.  The real person, with his real loves, hopes, and dreams.  The kid that wants to see Sea World with everything in him, appreciates classical music, and loves his new toys so much that he is asking much more often for us to come play with him.  He finally thinks we're hearing him, and he is honoring that by giving more of himself.

Santa, you brought me just what I wanted.

Really, does this face not say everything?

Ticking Away, The Moments That Make Up a Penguin Day

OK, I have to say it:  There are things about Brandon being autistic that I absolutely adore.

Yes, I know that Brandon is not separate from his autism, and that without it, he's simply not Brandon.  There are certain traits though that, at least to my eyes, are at least in part attributable to the fact that he is autistic.  One in particular, that, as the mom of two growing kids, I cherish, and that is, for lack of better phrasing, his continued innocence.  Maybe it's a delay in maturity; maybe it's an outgrowth of being wired not to conform to "typical" society and therefore not being in such a hurry to grow up.  Whatever it is, I love it.

What does it look like, this hard to define trait?  It looks like picking TV shows such as "Octonauts" as favorites, or deciding that it's OK to watch Baby Einstein DVD's again because they have animals and music that he likes.  It looks like doing a happy, waddling, tap-type dance so he can look like his "Happy Feet Two" friends whenever you mention penguins lately.  It's not caring that "My Personal Penguin", a Sandra Boynton board book is his favorite bedtime story, complete with fingers in mouth and best furry friend Roscoe the raccoon "reading" it to him.  It's still liking to go to Sesame Place, even though he is 9 & 1/2.  It's wanting children's museums, where he can still touch and play with everything.  It's still searching for my hand when crossing the street, even though I have tried to transition to a more age appropriate arm around his shoulders or light hand on his back.  It's getting to keep my little boy for just a bit longer than I should have had him, and I love every precious second of it.  

I do question how much is genetics and how much is autism, by the way.  After all, at age 40, I also still like Sesame Place, think there's no such thing as too many stuffed animals, and heartily share the view that Disney is, in fact, the happiest place on earth.  One of my better exchanges with my husband happened on a Disney cruise, when picking out photos that had been taken by the cruise photographer.  I had my picks in my hand, and he wondered why I hadn't chosen a different, better photo:

Me:  "Because this way we have one with Mickey and one with Minnie."

Danny:  "Sure, never mind the humans in the photo.  We've got Mickey and Minnie." (Insert *that* look.  You know, the one where your spouse makes very clear they think you need to get a grip.)

I think the salesperson may still be laughing.  Also, my husband heartily disagrees about the stuffed animals.

Regardless, there's change in the air this year.  We started seeing it in the classroom.  I've felt him drop my hand as soon as we cross the street.  And then, this exchange a couple of weeks ago:

Brandon and I used to have a "thing" at bedtime when he was younger.  I would kiss him, pull back, and ask, "More kisses?"  He would shake his head yes, and I would keep kissing his face, and maybe his belly.  He was good for three, sometimes four rounds before I stopped.  We haven't done that in a while.  I kissed him, and looked up.

Me:  "Brandon, enough kisses?"

Brandon: "Yes."

Me: "Remember when you used to ask for more kisses?"

Brandon: "Well, I'm getting older now."

Man, did that hurt.  He's used that phrase several times since then.  Yes, Brandon, you are getting older now.  You are headed for your first double digit birthday this year.  It's a double edged sword.  You are showing us maturity in ways that were frustratingly out of reach and very much longed for only a year ago.  And yet, and yet....

There I some things, sweet Boo, that I hope you never outgrow.  I hope you never compromise yourself, never try so hard to grow up and fit in that you forget the things that make you happy.  I hope you always love something as passionately as you love your penguins now.  I hope you always have something that makes you as comfortable and secure as Roscoe and "My Personal Penguin" do at bedtime.  I hope you'll always see the world with at least a little bit of childlike wonder.  I hope you will keep on being happily autistic, and that someday you will find your way to a community that honors that.

And yes, I know that you could care less about Mickey and Minnie.  Someday, a photo with Shamu.  Definitely.

You Should Know That

It's been longer that I thought - so sorry!  Sometimes, life is busy happening and I lose track of time.

A few nights ago, I was helping Brandon get ready for bed.  His "tell" when he's sleepy is obvious; he sucks on his first two fingers and rubs his beloved stuffed raccoon Roscoe's tail back and forth against his nose.  He's been doing this since he is tiny.  It is sweet, innocent, and adorable.  Though I will no doubt be paying for orthodontia because of it someday, I have to admit that I love watching him revert to shades of my sweet little baby boy, with nothing more pressing than a need to be tucked in and read to.  

I needed to get his t-shirt over his head, so I gently tugged his fingers out his mouth, telling him "Hey Boo, I need your fingers out so I can put this on."  He looked at me and said "I do that when I'm tired.  You should know that."

You should know that.  

Wow.

How very many things that covers.  I should know that even though you read at fourth grade level (and possibly above)  your very favorite bedtime story is "Personal Penguin", a board book.  Not only because it features your beloved penguin, but because it is short and predictable and allows you to wind down without placing any demands on you.  I should know that when your health is off, even very slightly, that I will get an e-mail from your teacher letting me know you had an off day because if your health is off, your filters will be low. I should know that I need to explain things like that to your teacher, because you can't do it for yourself yet.  I should know that you need some downtime in your man-cave, and that if I let that happen, you will eventually also ask to go out, or for us to come in and play.  I should know that you don't eat inedible objects to drive us all crazy, even though it feels like that sometimes.  I should know that even though you're bored of the foods you eat, trying new ones is still much too scary for you.  I should know that when we go places, allowing you to lead may not be the most efficient way of seeing something, but it allows you the control you need to make it OK.  I should know that there are all these things that I need to know, so that I can advocate for you until you can do it for yourself.  You should know that I love you, and every single day I'm trying to learn just a little bit more, so that when you say "you should know that", I can say "yes, I do."

Speaking of things I should know, I should also know that Cady knows (and understands) more than I think she does.  Always.  

Brandon has a fixation with gift shops.  Not only does he have a deep need to go into one at each place we go to (assuming one exists), but he has a deep need to come out with a toy.  Each and every time.  We've tried multiple tactics to squelch this, but the end result is usually a meltdown if we don't give in.  I think we're starting to approach the point where he's mature enough to work on this, but in the meantime, I will readily admit to consciously deciding to purchase my sanity.  And that in the interest of fairness, Cady is also allowed to pick out a toy.  Try not to judge me for this one, OK?

We had an interesting gift shop visit while on vacation this summer.  For the first time ever, the kids couldn't readily find something they really wanted.  Brandon was not about to rest until he found *something*.  Cady kept picking things up and putting them down, and we discussed not buying things that we could easily find at home (and probably for a lot less money.)  We talked about waiting until she saw something special, instead of buying a toy for the sake of buying a toy.  For the first time, she chose not to get something.

Later that evening, when I was tucking her in, she floored me.  This is an approximation of our conversation:

"Mommy?"

"Yes?"

"So, I know we go into the gift shops because of Brandon.  You know, it's OK, if we go into a gift shop, and you say that I should wait and maybe not get anything this time, because we're going to go into other gift shops.  It's OK."

I didn't know what to say to that.  I could not believe that my not-quite 8 year old had so thoroughly pegged what was going on.  That she understood enough to tell me that she was now grown up enough to want to be treated fairly, but that she was starting to get that fairly and equally are not always the same thing.  I should know that she gets it, even when she's busy acting like a very typical sibling who might wish we could export her brother to the moon, for no other reason than that he's her brother.  

My kids blow me away all the time, just by being themselves.  You should know that.

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.  

Fuzzy Love

My best friend is in from Israel, and I get to see her tonight.  SQUEEEEEEEEEE!

Sorry for the screaming, but I haven't seen Rachel since she and her family moved there a little over a year ago.  Her niece is getting married, and I'm spending Shabbos with them.  I'm not normally Shabbos observant, but the one before a wedding is a special celebration for the bride.  Rach asked if I could bring a few small kids toys with me for a game.  Everyone sticks their hand in a bag, pulls out an item, and has to bestow a blessing upon the couple that incorporates the item.  A fun idea, especially if the people involved have a wicked sense of humor when selecting the items.  The non-kosher toy pig should be a riot.

This morning before I left for work, I went to scope out a few toys.  To say that my daughter is not a morning person would be a gross understatement, and finding anything in her room on my own would require a map and a shovel, minimum.  I took one look at Cady faceplanting on the couch, and moved on to Brandon's room.  Sleepy Cady is fun for snuggling and planting smoochies on; not so much fun for getting intelligent information out of. 

On to Brandon's room.

"Brandon, can I borrow a few of your toys?"

"What for?"

"Well, I'm spending tonight with Auntie Rachel, and we want to play a game with a few of them.  Is that OK?"

"Yes." 

I start to look at his toy bins.  Brandon joins me, sees that I'm looking at his plastic animals, and starts to hand me one or two.  It's then that he takes my breath away.

"You should take some of my stuffed animals.  Here, take Norn, and...."

I will grant that Brandon has enough stuffed animals to fill out a section in Toys R' Us.  He is, after all, mine, and at 40 years old I still think there's no such thing as too many stuffed animals.  However, his stuffed animals are his most prized possessions, his very best friends, the subjects of the fantastic creative stories that he loves to build in his head.  Perhaps more importantly, they are his comfort. 

What he is handing me is not so much toys as his trust.  He is sharing what he loves most, and having faith that I will care for them and return them. 

I may never hear him say "I love you" without saying it first, but I will never forget that today he showed me, loudly and clearly.

Evolution

My journey with Brandon has been, like his autism itself, atypical.  Brandon was 17 months old when my mother suggested that I ask the pediatrician a few questions.  He wasn't yet speaking, and he didn't imitate.  He hadn't regressed; he was simply starting to miss the typical milestones.  I was very pregnant with Cady at the time, and didn't know enough to wonder about that on my own just yet.

I was not one of those cute, glowing pregnant people.  I think I mostly resembled a very grumpy walrus.  With sciatica and boobs that belong on a 6" tall Playboy Playmate, not a 4'11" waddling human with Fred Flinstone sized swollen feet.  Suggesting anything to me was an act of supreme courage.  Anyway....

I am, by nature, an information seeker.  Upon being given a diagnosis, I immediately needed to arm myself with as much information as I could find on the internet.  No doubt I overdid it.  But one of the very first things I ever found was Jim Sinclair's beautiful, insightful, and moving "Don't Mourn For Us."   If you've never read it, I encourage you to do so:  http://www.autreat.com/dont_mourn.html

I will forever be grateful that I did.  At the time though, I had no idea I was reading what is essentially the beginning of the self advocacy movement, with a rallying cry of "nothing about us without us."  I also had no idea that it's anathema to many parents, especially ones that fervently hope for a cure. 

It is, to some extent, ironic then that I became involved in what was originally NAAR (National Alliance for Autism Research) and later Autism Speaks.  At the same time I was becoming involved in Autism Speaks up to my eyeballs by co-chairing the NYC walk event, my son entered the LearningSpring School (LSS).  LSS really gets that parental search for clarity in a world that we inherently don't understand.  They respond by providing information, often in the form of guest speakers.  In my third year of co-chairing, one of those speakers was Michael John Carley, Executive Director of GRASP (The Global and Regional Asperger Syndrome Partnership).  Michael was not an unknown quantity to me, but in my universe he was best known as the guy that had opened up a dialogue with Autism Speaks regarding the word "cure."  What he had to say about that, the history of autism and labeling, and why Autism Speaks is so often vilified by the self advocacy community was eye opening.  To his tremendous credit, he laid it out there without an ounce of judgement in his voice.  How he felt was quite clear, but it was not judgemental in tone.  And was the beginning of an evolution for me.

Once your eyes are opened, you can never un-see, only be willingly ignorant.  I cannot afford the ignorance.  Brandon is already 9, and I know that my dearest desire is for him to inherit a world where autism is a difference, not a disability.  I want that thriving self-advocacy community to still be there, helping him to have a place in this world.  I still see value in Autism Speaks, and I suppose I always will - I am, after all, an NT parent, and I see the world with NT parent eyes.  However, I also see that we have caused so much pain, done so much damage, to the self-advocacy community.  How do we bridge that gap?  I don't know.  My thoughts, my actions, are still evolving. 

Evolution

Speak.

Please speak.

Too loud!

No more imitating animals, OK?

Great story, but it's not real.

No, it's not real.

My reality, or yours?

Is mine really better?

My world is not perfect, and there must be

A joining.

There must.

Only in the in-between can I leave you

To just be.

To be who you are

All of you

Standing on your own.

I cannot yet fathom from here to there.

We guide each other.

So...me and a blog.  A blog and me.  Here we are.  I suppose if we're going to go on this little journey together, I should tell you a bit about myself and how I came to be here.  Here as in on this page, not here in an existential way.  I promise not to subject you to that.  At least not right away.

I'm the mom of two beautiful kids, Brandon, who is 9 and autistic, and Cady, who is 7 & 1/2 going on 17, and (mostly) NT.  In the years since Brandon was diagnosed, I've been a volunteer for Autism Speaks, including three years of co-chairing the NYC Walk Now for Autism Speaks.  In those years, I've heard from a lot of amazing people in the autism community, and had a lot to say of my own.  So much, in fact, that "you should write a book" has become an oft heard refrain from family and friends.  I'm not a book-length kind of writer, but I thought I would finally give a blog a shot.  Particularly since I have been blessed with a pair of often quite funny kids, not to mention a hilarious best friend and a family that speaks sarcasm as a native language.  All of who, I'm sure, will end up contributing to the source material over time.  Oh, yeah, and there's a husband of almost 14 years.  Hi Honey!

I'm also fairly opinionated, which might also have something to do with how much I have to say.  Mom, you can stop choking from the laughter now.  Just remember, apple/tree and all that.

About my volunteering for Autism Speaks:  I realize that announcing this will make me a lightning rod for the self-advocacy community.  If you're part of that community and actually here reading this a) I thank you for bothering in the first place and b) would ask you to keep an open mind and to trust that I'm not a typical "curbie" parent.  For more on that, please see this:  http://grasp.org/profiles/blogs/great-letter-from-an-autism-speaks-walk-volunteer-to-autism-speak?xg_source=activity.  I think I have a lot to learn from the self-advocate community, and hope you'll keep reading and let me know (politely) when I get it wrong.  My reasons for remaining involved with AS are complex, and likely to be explored here over time.  Stay tuned. 

About the name of this blog:  Like many on the spectrum, Brandon has an area of special interest.  His would be penguins.  Lots and lots and lots of penguins.  All 17 species of them (yes, there are 17 species.)  He's added to his repetoire with other sea and polar animals (orcas are another favorite), but since the age of 3 his heart has never strayed from his beloved waddling, tux wearing, feathered friends.  I suppose it could just as easily have been rhinos, or gila monsters.  At least penguins are cute.  Plus we're close to the NY Aquarium and the Central Park Zoo, both of which feature his buddies. 

Thanks for joining me here.  I hope that you'll find what I have to say of value, or at the very least periodically entertaining.  I don't intend on writing every single day, but hope to be able to post at least once a week.  Keep waddling!