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!