X is for Xenophilia

X is for Xenophilia

Spell-check doesn't believe that word exists.

But Dictionary.com says it does, so I didn't have to make it up.

Because I so would have.

Because for every phobia there should be a philia. A love to counter the fear, the hate.

Xenophobia is all around us, it seems, built into our psyches, a part of the genome, holdover from our collective ancestral heritage, our hunter gatherer days when strangers brought danger and death with them more often than not, competitors for scarce resources.

Behaviors are somehow adaptive, help the survival of a species or they die out.  (Yes, I'm an evolutionist. Because I am not crazy.) So once it served a purpose.

But we live in another world, now, where our tribe is actually the entirety of the human race. And we may find ourselves to have more commonality with someone from across the globe than across the street.

But it doesn't always come naturally, this comfort with the strange and different, it often has to be taught. And so I am trying to teach my sons through word and deed. Although Jacob, in his own way is also my teacher in this, being essentially colorblind and delighted by all that is new.

And while the official definition of xenophobia cites: "a fear or hatred of foreigners or strangers or of that which is foreign or strange," how it manifests here in melting pot America, often cuts around the lines of race, as much as culture, and where and how we cross them. Or not.

So, yes, I guess I'm talking about race again. And racism, of course. I think about it a lot. And since Mocha Momma asked us to stop being silent, I've been talking about it, here, too. Just the tip of the iceberg, but you have to start somewhere.

And I know a white girl talking about race is not always welcome, sometimes suspect. But that's OK, I'm willing to take whatever comes out of opening up the dialogue here. Because to remain silent is to collude with the forces of fear and ignorance.

I have a friend who has raised four children in this city, mostly because it is the best place for them to be exposed to the full panoply of humanity and cultures. She has given me wise counsel on how to counter the fear kids often have of difference, how to cajole them out of their nascent xenophobia.

Her friends and acquaintances are black white Asian mixed-race gay straight Jewish Christian Muslim abled and differently-abled. As are mine. As are her children's. As are my chidren's.

Especially because I have a child who is different, other, often seen as strange? Working hard to create an environment of tolerance and acceptance, a community that crosses lines, is not only a nice ideal; it is vital. And it's personal.

Xenophilia: [zee-nuh-fil-ee-uh]  — noun 
an attraction to foreign peoples, cultures, or customs.
— antonym: xenophobia

Just think for a moment about what our world would look like if I could be granted my wish: a magic wand that turns phobia into philia.

Swish.

A small alphabetic and phonemic transformation, 2 letters in all.

But a universe of difference in meaning and manifestation. With the potential to transform the world.

Because at the core of war sits xenophobia, working its poison, seeking destruction of the different, the "other."

Because me, I'll take love over hate any day.

And the world that I want to live in, the world that I want for my children?

Chooses love, too.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And X? Hardest damn letter in the English language to come up with a good word to riff off of. Xylophone? Xanthosis? Xiphoid? Give me a break.


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SNSS: I am the Sister

Today brings a completely different voice to Special Needs Sibling Saturdays. Last week the stark. raving. mad. mommy. interviewed her children about their siblings…

Now, I bring you Luna, a young woman who is not a mother (yet) but who has a lot of experience with autism… as a sibling. Both of her brothers are on the autism spectrum.

She also has experience caring for children - other people’s - as she has worked as a nanny. She writes as ababynanny on her blog Hand in Hand in Lala Land.

Obviously NOT a Mommy Blog, although she openly admits to “hanging around mommy blogs.” Most SN/Autism mombloggers don’t have paragraphs like this in their posts:  ”I wonder what would happen if I totally started dancing to this song down the aisle of the library?  The only trouble is, my skirt would definitely slip down and I’m not, as such, actually wearing underpants.”

(Oh, to be young, footloose, and fancy free again.)

If you go there, be prepared to hear the interesting, sometimes random thoughts of a bright, funny, unconventional young woman exploring the world and her place in it. 

But first, read this moving post about her experiences as the sister to two autistic brothers, here:

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I Am the Sister – by Luna (aka ababynanny)

I am a 21 year old girl, not yet a mother, but I think a lot about autistic kids because both of my brothers are autistic. Growing up watching my parents try to raise my brothers gave me a lot of huge, huge fears about motherhood.

But reading (some might say stalking) Autism Mom blogs – especially stark. raving. mad. mommy. – is helping me to see how mothers can be content with their special needs families, loving their kids and knowing they are awesome. Right now I'm really coming to terms with my future motherhood.

I am the youngest child in my family, with two older brothers and one older sister.  My oldest brother David (now 32) has Asperger’s syndrome and my brother Tyler (now 30) is mildly autistic with developmental and learning disabilities. Although these guys are my “big brothers,” my sibling relationship with them, growing up, has been far from typical.

When giving a definition of autism, a doctor might tell you about the impaired social interaction. Real life translation: I can’t remember ever receiving a hug from either of my two older brothers.

The doctor might tell you about low IQ.  Well, I can tell you that ever since I’ve learned to read, I have been reading aloud to my eight years older brother instead of the other way around, and we both love it.

The doctor might mention restricted and repetitive behavior, but I’ve experienced the variety of having a brother who can always tell me about the latest movies and Broadway plays, and can’t rest until he’s collected them all on DVD. (Don’t call it obsessive.)  There’s a whole lot about life with autism that a doctor can’t tell you.

In some ways, my brothers are a challenge.  Growing up, when I invited friends over, I had to educate them first. I'd take them to the stairs in the laundry room on their first visit, and clumsily but confidently talk about things like poor reading skills and special ed classes, while they always listened quietly and respectfully.

My brothers required more attention from my parents in many ways. And people with Asperger’s syndrome typically have an emotional maturity rate of about 2/3 their age, so for years I’ve had to deal with the frustration of a “younger” older brother in both David and Tyler.

And yet, overall, I love the experiences I have with my brothers.

As a little girl, it didn’t seem strange - in fact, I was lucky - that the person I played dolls with was my teenage brother, Tyler. David, always very smart, would teach me about interesting things that most people wouldn’t, from ancient history to modern medicine.

Whatever intellect or sociability he may lack, Tyler paints and draws and is one of the most creative people I know.  Despite Tyler’s supposed limited ability to relate to people, he has a streak of compassion that runs deep and that I admire.  

For some reason he has this adorable weak spot for vulnerable women.  He gets tender and nurturing around them. Tyler has a volunteer position (supervised by other adults) taking care of the toddlers at our church while their parents are in class.  We had a single, pregnant relative living with us, and every Sunday he would always bring her a Dixie cup full of animal crackers they had been feeding to the kids.

He's unusually high functioning for someone with his type of disabilities. He can't learn easily, but he wants to SO badly!  He has a voracious appetite for books. He is the favorite visitor of our librarians and the employees and Barnes and Noble, and he can take the bus there himself.

Tyler collects books he cannot read and his teacher used to report him copying from the pages of books for hours, which strikes me, as a lover of reading, as poignant and tragic. He is however quite well read through all the books he listens to on tape. When tested, his scholastic skills fall around kindergarten level, but his vocabulary is relatively off the charts at high school level.

My relationship with Tyler now breaks my heart.  I adore him, but in a very distant way. I used to spend hours playing dolls and writing stories with him when I was little. I brought the writing skills, but he brought the play and imagination.

As I got older, we both outgrew that, and he got... annoying. He could be a such a brat, and I could never work out our tiffs with him the way I could with a typical sibling.

Even being around him, today, as a young adult, makes me feel overwhelmed with frustration. I feel like gritting my teeth listening to him go on and on about some movie.  I think my guilt adds to my annoyance. Why can't I just be patient and accepting? I pray for help with that.

I feel a strong desire to enrich his life. This is because he's so limited by lack of socialization, lack of independence, and lack of, well, the ingenuity and opportunity and comes with intelligence.

I genuinely WANT him to come live with me and my future husband when we have a settled home someday. Nieces and nephews would enrich his life so much. He is pretty low maintenance as far as day to day stuff and needs lots of alone time, so it wouldn't be intrusive or a big deal. Then my parents could have a life.

I was a live-in nanny on Long Island recently. The family went on vacation, and said Tyler could come stay with me.  I excitedly emailed my mom - Tyler had been saving up for a trip to New York, (he loves Broadway) for FOREVER.

Well, I think he was expecting a wonderland, but Manhattan is OVERWHELMING for someone with autism! My mom ended up coming on the trip, and he ended up needing her for support, but also resenting her taking away from our freedom and fun with her stress.

His favorite part of the whole trip was when he and I were alone and I took him out for some "real New York pizza" in a boring Long Island strip-mall. He told everyone about it.

Then there’s my brother David. The way David affected me really messed me up.  I was afraid to have kids.  No kid could possibly have been harder to raise than David.  And ya know it's genetic.

He was hell. My parents did EVERYTHING THEY COULD THINK OF for him. AND NONE OF IT WORKED. They tried to shield me from it, but I could tell.

My poor parents just wanted a simple life.  They wanted to raise a few average Christian kids who would do things just right: go to college, get married, make them some grand kids.

Instead they got psychiatrists and doctors and government aid and social workers up their butt forever.  And my dad, a great provider, has worried constantly about paying all our mental health bills and, as moral support to David, attended a million and one support groups. 

My parents are, and weren't to begin with, the most emotionally healthy people, and I am unique in my family for the way I have addressed that as I became an adult and really worked hard to get better.  But one thing I do really admire my parents for is the way they tried and persevered and supported my brother.

I was supposed to be the good one. Quiet, eager to please, precocious, even "wise," I was their last and easiest kid. Until I hit my preteen years and the stress and lack of emotional support in my home became too much for my hyper-sensitive self and I slipped right into the pit of depression that genetics had ready and waiting for me.

But, too bad for me, my parents had completely been run out of steam for that sort of thing with David. They would angrily have "talks" with me about my slipping grades, and I would get the eerie realization they thought they were talking to HIM, not me. 

They would say, "We've tried everything and nothing works on you." David could not be motivated to change by any reward or punishment under the sun.

But I hadn't done anything...

The thing is, David doesn't just have Asperger's, he has severe depression (that started way too young when he was teased at school), OCD tendencies, severe ADD. He is completely negative and self defeating.  He made a lot of bad choices and brought a lot of darkness into our home.

He was sweet to me growing up.  I was his "favorite," the least obnoxious of his younger siblings, and I cried and ran out of the house the first time my parents had to kick him out for behavior they couldn't accept in their home.  I even watched him be escorted away by a police officer once.

I am PROUD that David REFUSES to think inside the box, I am PROUD that he is so very smart, and PROUD that he always maintained a goodness and sweetness even at his lowest point.  He is proud of his unique approach to the world and absolutely refuses to change it, even though I think it would make his life easier.

He wants to help people, and I'm sure what he's been through has made him empathetic.  He's a cat whisperer, full of faith, and knows everything about everything. He's amazing, really.

Having my brothers around has taught me a lot about open-mindedness, acceptance, and individualism. Through Tyler, I’ve had the opportunity to work with many people with disabilities, including assistant-directing a play for developmentally disabled adults, something I never would have chosen to do if it wasn’t for my experience with my brother.

And occasionally David's quirks can produce comedy that is the stuff of family legends.

Like the time he randomly got it into his head, to write a letter hoping to convince our grandfather that he should, like David, give medication a shot. Our grandfather is probably mentally ill, but is the kind of narcissistic jerk who makes everyone around him miserable, without being aware that he has faults.

From one dysfunctional man to another, David's letter (that never got sent) began with a tactful opening and then went: "It is my opinion that you are insane." The entire family laughed about that for months!

I do have a bottom line.  And it is that my brother's are freaking SPECIAL people.

If I could tell parents anything, it is that autism is not the end of the world. Try to still be happy. David has finally grown up a little, did great with lots of biofeedback, and is slowly taking college courses and wants to become a nurse. He's a good person, always was, and we always loved him.

He's perfect, really. Both my brothers are. That needs to be all that matters.

Oh, and LAUGH.

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I don't know about you, but this post made me laugh and cry. It made me think a lot about how my autistic son Jacob affects his brother Ethan, and what I ask of and expect from Ethan on a daily basis. 

That Luna has been through so much with her brothers and still clearly loves and values them gives me much hope for their future together. 

If you want to hear what Luna has to say about other things, go to her blog Hand in Hand in Lala Land.  

You might want to try this post about actually loving kids, or this one written to the fathers in her life on Fathers Day, or this funny one on keeping a sense of humor about kids tantrums. Also if you just want to get inside the head of a sweet, funny 21 year old? Try this post about, well, you'll see. 

Luna has also written a guest post on Scary Mommy about why it's hard to be a nanny. Well worth the read.

You can also follow her on Twitter, where she tweets as ababynanny.  

Thank you Luna, for sharing the story of your life with your autistic brothers with us here, today.


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SOC Sunday: Wedding Bells

Sliding in here on the very edge of Sunday's tailfeathers. But wanted to post quick before I go collapse in my bed, then wake up early to prepare for the upcoming week's many challenges. So here goes....

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I was at a wedding today. a lovely, lovely wedding. I don't know the Bride and groom well, had met them at their engagement party last year. But the mother of the groom is a dear, dear friend of mine, so Danny & I made the 2 hour-each-way trek up the Hudson to Poughkeepsie. Yes I know some of you make that kind of trip daily as your commute. (thinking you must be insane)

We are New york city folk without a country home. to us a long drive is anything over 1/2 hour. Longer than that? Take the damn subway dude.

But anyway, usually that length trip better involve a sleepover for me, but today? totally worth it, to share my friend's joy.

As soon as I got home, I popped this in as my FB status:

Was at the loveliest wedding today. A friend's son. He has overcome many challenges to become the amazing young man he is today, and I am so happy that he has found love and an amazing partner in life. She has also faced challenges, and they understand and support each other completely. Also? Damn good looking couple. Danced my feet off, had a great time. Wishing them many happy years!

And I mean every word. This morning Dan & I were so not in the mood to go to a wedding. We're both stressed, too much to do, too little time.  We left a little late (but arrived EXACTLY on time, thank goodness I;d padded the drive time expectation!) and were stressy and snippy about that, tumbling into the car in dual nasty moods.

The drive up was not lovely... talking / worrying about money and autism and other fun fun subjects like that. But once we arrived? the beauty of the place (catering hall right on the Hudson river w/ sweeping views) and the sheer, clear & palpable happiness of the young couple and their wonderful supportive families just shifted our mood completely.

We didn't know many people there at all, (pretty much only the grooms parents) so I decided to treat it a bit like a date, talk with each other, hold hands, dance a lot together. and we did. and it was lovely. And we met some nice people too.

This morning I was thinking how I was going to write another whiny bitchin' & moanin' SOCS post today as I was feeling all bummed out about autism. tonight I;m feeling all warm and fuzzy (and no. I only had one glass of champagne for the toast, its not that) so moved was I by the force of these loving families we were celebrating with.

the groom is the middle of 3 brothers who love each other fiercely. It was awesome to be witnessing this. He loves puppets and animation, would love to be a puppeteer, is actively working towards that goal. and so his chosen song for his dance with his mother? The Muppet's "Rainbow Connection."

And they sang along, to each other, as they danced.  And I was really glad I was wearing waterproof mascara, because you bet I teared up at this.

It was all about who he truly was. In a family that "gets" him, marrying a woman who "gets" him. their honeymoon? They're going to Disney. Because they are playful, joyful people, and that's their idea of fun.

I was so happy to be a part of this... and now I'm going to sleep because I'm wiped out. My feet are killing me. I danced my ass off. G'night!

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Nothing to add really. Unless someone wants to come over and massage my aching feet... Husband, are you still awake?...

New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

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A is for Autism

A is for Autism.

For April is Autism Awareness Month.

A is also for awesome, like my son Jacob, a nearly nine year-old boy, with autism.

Jake is also astonishing, admirable and amazing. And that's just the "A"s.

He is, in fact, a whole alphabet soup of cool...

beautiful, charming, dynamic, engaging, fabulous, giggly, huggable, impressive, joyful, kissable, loving, marvelous, notable, outstanding, peachy, quick, remarkable, smart, terrific, unique, vivacious, wondrous, exuberant, yummy, and zestful.

And then he is also, at times...  

anxious, bouncy, confused, disconsolate, exhausting, fearful, growling, hellacious, impulsive, jarring, klutzy, loud, maniacal, nervous, overwhelming, puzzling, quixotic, relentless, self-directed, tangled, unhappy, vociferous, wretched, excessive, yawing, and zoned-out.

This is his autism. Our autism. Autism as we know it.

Different for everyone, this is Jacob's particular flavor.

Some days it's the sauce on the side and some days it's the whole meal.  Some days tangy, others bitter.

But it is always a part of who Jake is.

I always see the beauty and value of my son.

Some days I can see how his autism is a part of that beauty, giving him his unique vision; what some have called the gifts of autism.

Other days he is so unhappy, actively in distress, and all I can see is how it causes him pain, confusion, unwanted isolation.

And then I am mad at autism, which is fruitless, like being mad at the wind. But still, I am.

I am aware of autism every day.

It is our life.

And now, so are you, maybe, a little bit more.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And choosing an "A" word, for me? Now, THAT was a no-brainer if ever there was one.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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The Beauty of Each, Our Every Child

There is a documentary that's gotten a lot of buzz lately called “Where's Molly?”  A recent CBS news feature on it has been making the rounds on the internet.  I am assuming that many readers who are part of the Special Needs parenting community are familiar with it.  If you're not, you can see it here.

It's the story of a man’s search for his autistic sister, who disappeared from his family when she was 2 and he was 5.  She was vanished into thin air; "sent away" never to be heard from or spoken of again.  And then, some 47 years later he began to look for her.  And he found her.

I saw that video the other day and couldn't stop crying; rivers of tears just poured down my face.  And knowing that there are so many other stories like this one?  So many children that were just thrown away like yesterday’s rubbish?  Is beyond heartbreaking.

Last month we had our first parent-teacher conference for our son Jacob (who is on the Autism Spectrum) at his wonderful new school.  It went so well, and was lovely to see how fully his teachers and support team saw Jacob's strengths as well as his deficits.

But just before the meeting, when my husband and I were having a quick coffee together, he looked up at me and asked "If Jake had been born in our time, they would have called him 'retarded' wouldn't they?" 

And I had to say "yes."  No one would have looked under the language deficit, beyond the sensory seeking behaviors and seen his intelligence and humor.

If he had been my brother instead of my son?  He might have been sent away.  How sad that makes me can't even begin to be touched.

And then, tucked away in the back of the December 5th Sunday New York Times Style Magazine, there was yet another article, an excerpt from a book written by Allen Shawn about his autistic twin sister, sent away to "camp" when they were 8 years old (my sons' age) never to return. 

Unlike Molly, she didn’t completely disappear. Her family visited, kept contact.  But still, they lived apart, in separate worlds, her home lost.

And then I have been having even darker thoughts.   Because Jake's twin brother Ethan has been doing a school unit on immigration, he had to do a lengthy report on his family history.  He was interviewing me and I told the tale of my mother's parents both coming over on boats from Eastern Europe, through Ellis Island (the classic New York Jewish immigrant story). 

My mother's father's family right off the boat.  Literally.  On Ellis Island, 1920.

As part of this, I had to answer questions about who came over and who was left behind.  And while my grandfather's whole family came over, my grandmother's whole family stayed behind; they had a business they didn’t want to leave.  She was the only one who crossed to America.  And she lived.  And they all disappeared. 

Telling this tale opened up the story of the Holocaust to Ethan, who, at 8 is starting to be able to handle some harsh truths like this.  As I was finding gentle ways to talk to him about this, I wanted to make sure he knew this was not just about the Jews - our personal part of the story, the 6 million lost - but also to include the other 5 million, the long list of those considered "other," "lesser," "unworthy to live." 

And I listed Jehovah's Witnesses, homosexuals, and Gypsies, talked about the absurdity of using skin color as a measurement of value.  And then, racking my brain to remember who else was on the list I hit the disabled including "Mental Defectives."  I was remembering they were among the first to go, near the top of Hitler's "undesirables" list.  How he had "gas vans" drive around cities picking up the mentally unfit and disposing of them immediately. 

And I nearly lost it because I realized that meant Jacob.

That would have been Jacob, had we lived there, then.

Or if that were to suddenly be replicated here, now.

(Don't be complacent and think that couldn't happen.  The German Jews thought they were essentially regular German citizens, completely assimilated into society.  All it takes is a charismatic leader with really bad ideas, good spin doctors, and a strong military to back him / her up.)

And so I struggled not to let anything show on my face as I felt the full on horror of that scenario playing out in my mind while I blithely went on, deflecting Ethan from this too soon knowledge.

Stumbling over my words: “There are others on the list, I don’t remember exactly who, but that's not important. What’s important to remember is how wrong it is to judge whole categories of people by what they are instead of by who they are, as individuals.”  

The assigning of differential values to human beings because they belong to one category or another is fundamentally wrong in my book, and I work hard to convey those values to my sons.  It was ever this way with me, but has become even more so now, as I look at Jacob through the eyes of others and see how easy it is to dismiss him, to place him in a category of "lesser."

I, like so many other Autism Moms was particularly struck by one moment in the wonderful Temple Grandin bio pic on HBO this year.  When her mother says, fiercely "Different, not less.”  

And that has become, I think, for many of us our rousing battle cry as we seek for our children all that they deserve: dignity and respect; to be included in all that they want to be included in; to be educated BEYOND the lowest rung of “appropriate” - to be educated creatively and caringly to the fullest possible extent, so that they can achieve their highest possible potential.

And to never stop searching for what that potential might be.  Even when it is hidden inside an infirm, floppy body, or tied up in knotty language that tangles with every turn inside the brain. 

As more and more of these stories of hidden away, lost children come out, as I think of the many other times and places where children like Jacob would have been thrown away, I am so thankful for the time and place he managed to be born into.

We are nowhere near where we need to be, to truly be an open-minded society that sees value in every individual.  But still, it’s the best time yet that has ever been for being born different.

The gas vans are not coming for my son.

Not today.

And I find comfort in the knowledge that all of us folks in the Special Needs parenting community around the world are striving to make a brighter future real; to help everyone, everywhere see our children as different, but not less. 

To discover and to truly value the wonders that lie within; the beauty of each, our every child.

Note: This was originally posted at Hopeful Parents, on my regular monthly day there, the 10th of December, as "Value-Able."  But I had posted it very late in the day (you can read why, here) and I have strong feelings about this post.  It's another "big one,"  full of things I'd been mulling over for a long time before they coalesced into a post.  

I almost held it back, to keep it on my own blog, but I had nothing else to put up over at Hopeful Parents.  I take my commitment to that blog and community seriously, did not want to miss my appointed time, so up it went.  But now I realize, I also want it here, back "at home" with me.  So I am re-posting it here, with a few additions and tweaks.  And choosing today, Christmas Day, to put it up? A timely reminder to value EVERY child born.



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