Wednesday, July 25, 2012

Poster Child

Last week I got a phone message from the young lady who coordinates the special needs programs at our local Y.  For the past year, the Y has been offering special needs soccer, karate and swimming, and it’s been a godsend to us. 

It’s a place to go and we’ve met some nice parents.  We’ve been very grateful.

She was asking if we could bring James on Saturday so they could take photos of him for their web page and brochure. It may have seemed harmless enough.  
Most schools and SN sports classes ask us to complete a photo release form at registration, so over the years James like lots of other kids has appeared on websites before.
But this time it felt different. That’s because when I look at James, he is different.  He’ll be nine soon.  He weighs 80 pounds.  We wear the same shoe size.

He’s a real kid now – a kid who trusts me and relies on me in a way typical kids don’t rely on their parents. 
Despite his autism, I feel like I’m tricking him if I intentionally bring him in for a photo shoot.  He’ll do as he’s told.  He’ll climb the equipment and smile if asked.  But he won’t understand why.  

He doesn’t know he’s different and that this is a brochure for a program for kids who are different.
I feel like he’s reaching an age where he should have a say as to whether he wants to be a poster child for autism.

By the same token, the program has given us a feeling of belonging and I want to give back.
But I’m torn.  Do I have to give back until he’s 18?

I’ll admit it also makes me a little sad because I didn’t think we’d have to make these decisions when James was this age. 
I thought we’d be done with autism and that James would be the poster child for therapy – the benefits of therapy and how it can change a child who is on the spectrum to just a quirky kid who can have relationships with other cool, quirky kids.

James hasn’t outgrown autism, but he’s outgrown being a child - and I’m thinking that includes being a poster child. 
So I decided that if autism didn’t go away maybe this request would go away if I just did nothing.  I didn’t return her call and waited to see if she’d call again (not that I would have picked up if she did).  When I see her, I’ll give an unconvincing excuse like we were away that week.

It’s hard to accept that autism isn’t going anywhere just like the endless decisions we as SN parents have to make aren’t going anywhere soon.   
Maybe it’s time to stop putting kids on posters as the face of autism and put the parents on instead.  We can be poster parents for denial, fear, confusion, avoidance, exhaustion, and so much more.  

I’ll come in for a photo shoot for that.

Thursday, July 19, 2012

Why I Like Alphas

“Alphas,” a program that is entering its second season on the Syfy channel, features five people who are Alphas – persons with extraordinary abilities.  Their job is to find other Alphas who use their extreme mental and physical abilities for wrongdoing. 

So every week the” good guy” Alphas fight the” bad guy” Alphas – as my son, James, would say. 

One woman, the soft spoken, repressed Rachel, can shut out four of her five senses and use her remaining sense to hear heartbeats, see dust patterns, etc.  She fights Alphas by day and by night battles her Persian family’s shame of her abilities and her unmarried status. 
Another woman, Nina, is the token hottie (is that word still used?).  She’s a poor man’s Samantha Fox and when she’s not battling bad-guy Alphas with her enhanced powers of suggestion, she wrestling with her own sexy, bad girl demons. 

My husband lights up when she answers a post of his on her Facebook page.  I haven’t had the heart to tell him that her publicist is probably responding to all of the drooling men who post.  But, I digress…
One man, Bill, is a family man with super strength, and another, Cameron, is a loner who has hyperkinetic abilities.  Like every man on an action show, they are both dealing with their own macho issues.

And then there is Gary.
Gary is young man who has high-functioning autism (“32 on the CARS scale” as he tells people) and who can see and read electromagnetic waves.  Gary is in his mid 20s and as of last season lives with his mother.

Each character brings to the team his or her own extraordinary ability.  They also bring their own baggage – some of which is already apparent and some which is slowly unfolding.  Except Gary. 
Gary’s baggage is his autism and it’s right there.  No secrets.  It’s there when he moves his arms and fingers and looks around like he’s reading something (because he is).  

It’s there in his mother’s worn and worried face.  It’s there in how he speaks, in his obsessions, and in his unashamed honesty

Gary has savant abilities and to some people in the autism community that is a stereotypical portrayal. 
But all of the main characters in Alphas have savant abilities so that makes Gary an equal member of the team.  They have to navigate Gary’s perspective – and each other’s – because they need one another.   
The show sprinkles in subtle glimpses into Gary’s head so that we can compare how the world sees Gary versus what he sees. 

When Gary is flicking his fingers, he’s reading radio waves.  Gary notes that a roaming security camera (he can see the waves) in the building next door can look into their office and that’s why he won’t go to the bathroom at certain times during the hour.

Ultimately – like in all action shows – all of the characters are tortured souls who want something and are dealing with whatever it is sitting inside of them holding them back. 
Gary’s wants may be more concrete – he wants friends, he wants to drive a car, he wants people to listen to him – but his autism is holding him back. 

Rachel wants to speak her mind like Gary does but her upbringing holds her back. 
Nina wants love but doesn’t believe she deserves it (because she’s such a hot sexy bad girl with a past).  The men…well you get the picture.   

In the end, they are all different – different from us, different from each other.  They fight bad guys and, like us, they wrestle with their issues – together and on equal footing. 
And that’s why I like Alphas.


Thursday, July 12, 2012

Trapped in the Wonder Years

My husband spends much more time on Facebook than I do and has rekindled many friendships with classmates from high school. Today, two friends from long ago were visiting from out of town and came over to meet up with him.

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?

Look at Bobbie Lawrence…what a burnout. He lives in California now.

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 18-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?  

My husband 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.”

“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.

Thursday, July 5, 2012

Take a Break

The two most dreaded words to an SN parent:  school break.  But not for my husband.  He cracked the code.

Our son, James, was off the week between school ending and summer school starting.  Ordinarily, I would have been with James and stumbled through the break as I went along.  But, I started at a new job a month ago and couldn’t take the time off. 
So my husband, Donald, stayed home with James for the week.  This was his first time on break duty and I felt guilty that I didn’t schedule anything for them to do.  Five days is a long time to be alone with a self-directed child. 

But Donald assured me, “Don’t worry.  There’s enough for us to do.” 
On Monday afternoon, I called to check in. 

“How’s it going?
“Really good.  James played electronics and rested a lot.  He was very happy.”  Then he slipped it in:  “I even got to go out and do a few errands.”

“You did?” 
“Yes.” 

“Alone?”
“Yes.”

“Where was James?” 
“In the apartment.”

“Alone? 
“Marcella was there.”  (Marcella comes every two weeks and cleans our apartment.)

“Marcella watched James?”   (Did I mention we’re usually not home when Marcella comes so she’s maybe met James three times in four years?)
When he sensed my shock, he started to backtrack.  “I was only gone for a few minutes – and she didn’t even know I was gone.”

“So you went and didn’t tell her?  Did James know you were out?”
“Oh yeah he knew.  She didn’t…” 

Uh huh….
On Tuesday, Donald had scheduled a three-hour dentist appointment to have a bridge put in.  He took James to the appointment with a bag of electronics and snacks. 

“How did James do?” I asked later that afternoon.  “Did he sit there the whole time?” 
“I think so.  He also spent time with Kim.”  (Kim is the receptionist) 

“How much time?”

“I don’t know. I was in the chair and didn’t see what he was doing.” 
“Was she o.k. with watching him?  Does she know James is autistic?  I mean I’m sure she knows now, but did you tell her before your appointment started?”

”It’s fine.  Kim’s cool.”
 O.K….

On Wednesday, he took James to visit his 92-year-old aunt.  During check-in, he said that, yes, Aunt Marie was thrilled to see James and then added: “I took a nap while I was there and let Aunt Marie have him to herself.” 
A nap?

On Thursday, they went to visit Donald’s sister.  She loves James to pieces so I didn’t have to ask - he came right out with it: “James and his favorite aunt got to play and I took a snooze.”
What have I been doing wrong the past eight years?  How come I never used school breaks to get my hair done and catch up on sleep? 

I was telling my friend about how Donald breezed through the week without a care in the world and she laughed, “You do know that he got away with it because he’s a man.  If we did that, all those women would be throwing darts at our pictures right now.” 
Aahhh…so therein lies the difference. If I plop my kid with the cleaning lady, the receptionist, or the elderly aunt, I’m shirking my responsibility as a mother. 

When a dad does it, well he’s just bumbling along so let’s give the poor guy a helping hand.

Still, I got to go to work and James was happy (because Marcella, Kim, and Aunt Marie are great baby sitters).  My husband knew he needed help and called in the unwitting troops and the world is still spinning. 
Next time there’s a break, I think I’ll get my roots and highlights done.