Saturday, November 26, 2011

Trapped in the Wonder Years

My husband, Donald, spends much more time on Facebook than I do and has rekindled many friendships with classmates from high school.  Today, two friends were visiting from out of town and came over to meet up with Donald and each other in person.  I watched and listened as they sat on our couch poring and reminiscing over their yearbook.  It was a familiar conversation held over many a yearbook.

There’s Delores Katonah – remember when she dyed her hair jet black and when she tried to dye it back to blonde it looked green for a while? 

Oh man, look at Bobbie Lawrence…what a burnout.  He lives in California now.

Oh, it’s Maureen Ridnik.  Everyone called her Redneck.  Didn’t her older brother die of something?

Tommy Schaeffer …  he dated Patty Patrice and they had that fight in the lunchroom and she threw her milk at him.  I think she’s born again now…

Listening, I could already hear in my head the dialogue on someone else’s couch over my picture.

That’s Jacqueline Peters.  She was sooo quiet.  I hear her son has autism…
Despite the decades that go by, people get stuck in time and can’t shake the flakey personality, the bad hair day, the shyness, or the fight in the lunchroom.

Maybe that’s why many parents today are so acutely aware of the pain of growing up that they try to shield their children from all the angst of youth.  They don’t want their kids to expend as much energy as they have running away from or fighting the yearbook one liner. 
They also realize that even if you completely transform your life - for better or worse - and are no longer that boy or girl in the picture, the folks reading the yearbook will have no clue.
You’re always the kid who was shy and now your kid has autism.  There’s no in between. 

That 17-year-old girl is now a grownup and a completely different person.  Maturity changed her, college changed her, working changed her, marriage changed her, and autism changed her.  But none of it matters when the yearbook comes off the shelf.  You may be called Jackie now.  You may have run five marathons (I haven’t). You may write novels (I don’t).  You may have climbed Mt Everest (that’s right, I haven’t).

How do you tell people that your kid is amazing and that autism is more than a word and your life is more than that word?   Donald would say, “Who cares what they think?”   I say, let them think I’m shy, let them think I’ve become agoraphobic if they want.  Reduce my life to one sentence but don’t do that to my life with my son.  

You can say, “I hear her son has autism,” but don’t stop there.  Finish the story. 
How about, “I hear her son has a beautiful spirit, an incredible sense of humor, wondrous eyes, and a smile that lights up a room.  I hear that Jacqueline can’t believe that her friends have been so amazing and supportive since her son was diagnosed and that she has since met wonderful parents who have kids like her son.”

“I hear her husband is a great dad who makes sure he’s his son’s best friend.  I hear she can’t believe how lucky she is to have her little guy – and it’s all because of autism.”

Trap me in the wonder years:

That’s Jacqueline Peters.  She was sooo quiet.  I hear her son has autism…

Just give me one extra line:

..and everyone’s doing o.k.

Sunday, November 20, 2011

Shiny Happy Facebook Pages

It’s a convergence of personalities, generations, lifestyles, and perspectives as we’ve expanded our universe of “friends” with whom we stay in regular touch and share our lives.  The facets of our lives we choose to share can vary widely.  

Some people post about the lemon chicken they made for dinner (with photos), their delayed flight to Detroit, the new flavor potato chip they just tried.   Others will rarely post assuming that no one would be interested in their vacation photos, their dinner menu, or their jalapeno potato chips.
As a self-described introvert, I’m more of an observer on Facebook than a poster.  One thing I have observed is that I don’t see postings about life with a special needs child.  No one posts about therapies, special needs schools, melt downs, or even the joys of finding the right school, really clicking with a new ABA therapist, or their child making a friend.

It has made me wonder if everyone’s world is so much rosier than mine that even the lemon chicken has a taste and glow worth posting about.  That is, of course, if they are not posting their wannabe pithy comments about  parenthood or their photos of smiling kids at birthday parties, pumpkin farms, and dance recitals. 
But it’s their version of life gone awry that can give me even bigger pangs.   You’re fried because your daughter had a sleepover in your home with eight girls?   You have empty nest syndrome because your son went off to college?   Your flip camera broke just as your daughter began singing the lead for the school musical?  I’m sorry but I’m having trouble grieving for you since my son quite possibly will never do any of these things and now I’ve just been reminded of it all over again.

Am I the only Facebook friend with a special needs child or am I not giving the lemon chicken people enough credit for possibly having a child with special needs but being able to enjoy their child and share those happy moments?  Is the kid with the bright eyes in their birthday party photo as “amazing” as I see my kid?   
Maybe Facebook is the antithesis of reality TV.  No one posts about their special needs world.  But most people don’t post about messy divorces, anorexia, bulimia, or your teen kid telling you he hates you either.

Maybe Facebook is our equal opportunity happy space.   It’s the reality we’d like to live in if not for our real lives. There’s no place for divorce, rotten bosses, unemployment, depression - or autism - on Facebook.
I think I like that.  Maybe I’ll start posting and share the joy.

Tuesday, November 8, 2011

Real Housewives

It started with Real Housewives of New York City, then New Jersey, then Beverly Hills.   

James is asleep, Donald is on Facebook, and I watch the shows while chatting on message boards ad nauseam.  I can’t help it.  I’m emotionally involved.  Caroline is a self-righteous bully, Luanne is insufferable, Kyle is an enabler…  Why do they hate Alex so much?  What is going on with Kim?  “Why are Caroline and Teresa not speaking?”

It’s reality TV in all its brilliance. And it’s never about the drama as much as who said what to whom.  It taps into the 16 year old that lives inside of every woman.  It is my escape to a time when life was easier and my teenage psyche was consumed by the minutia of our relationships.  “What did she say?  And then what did you say?  And then what did she say to that?  How did she say it?  Did she look mad?”    

In high school, these conversations generally circled around the drama of a prom, a birthday party, or a final exam.  In RH country, it’s a barbecue, tennis game, fashion show, or botox party set against the glitzy backdrop of Hampton estates, Manhattan town houses and California mansions.  The housewives wear designer clothes and sexy shoes, they wear hats (o.k. in NJ they wear wool hats at the kitchen table and I don’t know why), and they own restaurants and baseball teams.  But their lifestyles are not there for us to admire.  Their affluence is the eye candy.  And, our prize for tuning in is that we get to judge them. 

I put life – complete with autism – on hold while I watch the housewives and become absorbed in their girl angst.  They may be the women we love to hate, but they are also rather wonderful as they stand by their flaws.  They argue, diet too much, divorce, flip tables, curse each other out, and have too much plastic surgery.  I get to watch their typical dysfunctional lives from my atypical functional life.

And I get to pick apart lives that have nothing to do with autism.  From the time when James was young and in the pre-diagnosis stage, Donald and I dissected every aspect of James’ life.  He’s holding an Elmo doll close to him – that’s good, it means he’s attached; he won’t let go of Elmo without screaming - he’s perseverating; he looked at me and smiled – that means he’s related; a shelf fell down next to him and he never flinched – he must have autism; he cried when grandma left – he must care and be related and not really have autism...

Now, at elementary school, we try so hard not to live for the sight of a teacher’s note.  But the words are there right on the tip of our tongues.  “Did she write a note?”  “Read me exactly what she wrote.” “Did he play with other kids?”  “She used an exclamation point when she wrote that had a good day!”  “He argued with another boy?”  “Did she say what they argued about?”

But for one hour a week (and the subsequent seven hours I spend discussing it), I’m travel back to the lunchroom.  I get to be 16 again – before there were all the responsibilities that came with careers, marriage and children, before there was autism and it was all about being a girl and working through the angst of tests, boys and friendships and looking forward to being a grownup.

Tuesday, November 1, 2011

My Best Friend

I met my best friend, Hope, around the time that James’ delays became apparent and I began the rounds of evaluations and doctor visits, meeting new therapists (and actually finding out that there were therapists for these things) and learning new terms like body awareness, receptive language, proprioceptive input, etc. 

Hope was there when it all began and she immediately “got” me.  Even now, five years later, she keeps me going and gives me the strength to stay on top of James’ academics, therapies, and social skills development while nurturing his psyche. 

She convinces me to focus on how far he’s come and that therapists, teachers, and psychologists only see “spectrum boy.”  They don’t see the real James inside of James, the James who can be reasoned with, the James who doesn’t need to rely on behavioral therapies to help him through tough periods, but who needs someone like me who understands how he is experiencing the world, how things come at him in a very intense, yet disjointed way.  Hope knows that if I can see the world like James can and relate to him through his experience of the world then I can help him break through the curtain between him and the world.

Basically, Hope tells me what I need a best friend to tell me – that everything will be ok, and that James, who by all accounts is “high functioning,” will someday live independently, even get married and have kids. 

I tell myself that when he does, I won’t be the doting, worrying mother and I’ll be the dream mother-in-law.  I’ll be thrilled for him and his wife if they decide to move to the other side of the planet and I only see them once every few years (of course, I’ll have skype).  I’ll just be so happy that he has a life and he is living his life with another person who loves him and isn’t his mother.  As a matter of fact, I’ll be so hands off and supportive of whatever they do that I’ll be my daughter in law’s idol.  She’ll want to call me “mom.”  That’s where Hope helps me take the dream.

Naturally, I know that no one really lives the dream life.  One thing having a child with special needs has driven home for me is that “normalcy” is an illusion and it is a very rare family that has the ideal life with perfectly healthy and well-adjusted kids who follow the traditional course.  Still, they have that dream and with all that I’ve come to know about what “normalcy” is and isn’t, that’s the dream Hope has for me. 

Yes, my friend, Hope, like me, believes in my son and believes that someday I can put all of this behind me and live that life or some facsimile of it.  

I feel guilty at how easy it will be for me to forget it even happened – as if this was a ten-year “glitch” in my life and now things are back to “normal.” 

Sometimes Hope and I talk about how my life will change.  I have a whole new repertoire of knowledge, vocabulary, and wisdom.  I could take a special ed graduate course and pass with flying colors.   But I can put that all aside.  Hope and I wonder if I will stay in touch with my special needs mom friends or will it be too awkward for them – or me?  Will I fit in with other women with typical kids or will they bore me with their petty rants about whether their child was invited to a classmate’s birthday party?  Or will I become just like them?  Will it become that easy to forget?  Hope and I think not but we know the lure can be strong.

Hope helps me to continue to plow forward and keep my eye on the prize just like any best friend would.  If you had two left feet and dreamed of becoming a dancer, wouldn’t your best friend encourage you to continue going forward and pursue your dream?  That’s what my best friend does.  You might not make it to the American Ballet Theatre, but it might get you to the travelling dance troupe.  I know that maybe a “real” friend would tell you the truth, “Honestly, Jackie, you’ve been at this for five years and it may not be in the cards.  Have you considered a career in nursing instead?  You are warm, compassionate, and you like helping people.” 

But James and I have enough friends telling us that.  We all need that one friend who believes in us and our dreams however far off they may seem.  James needs me to be that person who doesn’t give up on him and I need my special friend to help me have the dream for him.  It’s what keeps us going and I’m like anyone else – I need the dream. 

Hope is my best friend and I don’t know what I’d do without her.