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?