Thursday, February 23, 2012

Give Me a Break

When our son, James, was a toddler and we realized he had delays, we lived in fear of one word – autism.   When we learned there was a whole “spectrum” to autism, it joined the short list. 

It took me years before I could say those words and now they slip right off my tongue.

Now that James is eight, there are two new words that strike fear into our hearts – school break.

This week is James’s winter school break.  Many friends with typical kids will fret about how to keep their kids busy or the cost for signing up for a week of camp.   They long for the days of our simpler childhoods when our mothers just sent us out to play.

But I’m glad we’re not living back then because my son couldn’t just go out and play.  I can imagine hearing the noise of kids playing outside while my son is in the house alone watching TV, or playing Nintendo, Angry Birds, or Mario Kart. 

These breaks strike fear into me because I don’t have my job and James’s school to help me put autism aside for 8 hours a day.  I am yanked back to the isolation of my “different” world where I have to think about how I’m going to get him out the door.  I have to figure out how keep him from sinking back into his superhero world when we work so hard to keep him in our world.
This time, however, I got a pass.  My parents, who usually go away for the winter, stayed home this year and offered to take James for two nights and three days. 

James was so excited to go.  He couldn’t wait to teach grandpa how to play Beyblades (little does grandpa know what he is in for).

But I think his real excitement stems from how settled and grounded he feels when he’s there.

My parents live in a retirement community.  There are no kids with whom to compare him.

My mom is 78 and at a point in her life where she doesn’t go out of her mind if she stays in for three days.  James is her distraction.  Having her grandson sit on the couch in the den and watch TV while she brings him a never ending supply of snacks is heaven for her. 

James seems to thrive on the quiet, the routine, and the peace.  Grandma gets up at 6 and puts the coffee on.  Grandpa gets up a 6:30, and goes out for rolls and the paper.  At 7, it’s breakfast time and they eat together.  Mommy isn’t pushing him off her in bed yelling, “let me sleep!”

He’s putty in their hands – probably because there isn’t an underlying tension between him wanting to just be and his parents trying to get him out the door. 

“He’s tired… He works hard at school…  He needs a rest..,” my mother will say.  They are all in rhythm with each other.  And if they mention an impromptu visit to Carvel, he’s in.
According to my mother, James doesn’t fixate as much with them.  Maybe it’s because he’s not clinging to superheroes as an escape or maybe they just don’t keep a scorecard of his obsessions. Where I see autism, they see cuteness and quirks.

I’m sure there’s a lesson here.  My husband, Donald, and I try hard just to “be” with James, but being in his world long-term makes us antsy.  We need him to meet us half way.  It’s hard for him to do that. 

So at grandma’s, James gets a true break.  No one is yanking him into their world.  And while he’s at grandma’s, we get to relax in our world.

I guess we all needed this break. 

Thursday, February 16, 2012

I'll Call You

It was one of those rare occasions where my son, James, had a playdate. I had a lot of errands to do that afternoon and planned to be home by the time the boy, Marcus, would be dropped off. 

I called my husband, Donald, as I finished, “’I’m on my way.” 

“Take your time…we’ll be fine.”

With a little extra time to myself, I went to Starbucks to get an iced tea and just “be.”  As I sat down to my drink, my cell phone rang.

 “Where are you?” 
“I’m a few minutes away.  Why?” 

“Marcus wants to watch the Food Channel; James is in his room.  When Marcus goes into James’s room, he jumps on him and squeezes him and won’t let go.  I have to manually pull them apart...”
 “Alright.. I’m on my way…“ 

I got home and Marcus was sprawled on the couch watching TV.  James was in his room playing with Marcus’s Nintendo.  Donald looked lost (aka useless).
I began to snap everyone into shape.

“James!  Your friend is here!  Let’s play something!  Marcus, come on in James’s room.  Let’s play!”

Marcus, who is bigger than James, went to the bed and jumped on James.  I noticed a lot of squeezing and hugging on Marcus’s part.  James first thought it was playing but started screaming when he couldn’t get out from Marcus’s grip. 
Donald was standing by, “See what I mean?” and then added, “I’m going to the bathroom."

Needless to say, I never saw him again.
I stayed with the boys, facilitating, and trying to keep some sense of order.  “Don’t jump on the bed,”  “James is smaller so you have to be careful,”  “Don’t lay on top of James,”  “James, your friend is here; why don’t you show him one of your games…?”

But neither boy listened.  Marcus wanted to smother James with hugs and kisses.  James, in turn, started repeating everything that Marcus said, which made Marcus very agitated.
After about an hour, I gave up.  I suggested they both play with their Nintendos - one boy on the couch, the other in an easy chair, both playing their own games intently, not acknowledging the other.  The perfect PDD play date.

When the mom arrived, she quickly asked, “Did they play?” and I saw her pleading, hopeful eyes tell her own story. 

“There was some playing...”
“Really?“ she asked suspiciously. 

“Well, next week how about James comes over?  I’ll call you.”

“Well… let’s talk on Friday and see how the week plays out.  James still doesn’t do drop-offs.  I’ll give you call. ” 
I decided to wait until she texted or called to see what we’d do.  Maybe she thought she’d wait for me, because neither of us got in contact.   

Did she sense my hesitation when I told her we’d see how the week played out?  Or was her son still ranting about the day like mine?  James was still upset about the squeezing.   Marcus was surely upset that James kept imitating him. 
It was like dating.  We both knew it wasn’t very good despite the fact that we said, “I’ll call you.”  That’s because in the world of autism and play dates, if your great grandmother’s china sugar bowl didn’t get smashed on the play date, the door stays a little bit open.

I’m willing to bet that if we run into Marcus on the street, James will start yelling at him about the squeezing and Marcus will start yelling about the repeating.  And the mom and I will still look at each other and say, “I’ll call you.”

I remember some less than lukewarm dates in my single life and I went back for the second date thinking things might change if I got to know the person better.

Not our kids.  They cut to the chase.   It was a bad match.  “You annoy me.  We’re done.”   It doesn’t make sense to deal with someone incompatible. 
Maybe there is something to learn from them.  When I figure it out, I’ll call you.

Thursday, February 9, 2012

On the Job

I confess I don’t tell everyone I know that I have a son who has autism.  Depending on the nature of our relationship, some people know the whole story, many know an abridged version, and others don’t know a thing.  

Most of the people at my office fall into the last category.  They are for the most part younger and don’t have a clue about my “high functioning” life. 
In a way, it’s like an escape from my special needs world to be seen as typical from 9 - 5 – even if it’s just in the eyes of these Millennials.  To them, I am Jackie, a pleasant grownup with an ordinary life – albeit boring and unexciting to them – a nice, geeky husband (sorry Donald, but that’s what they see), and a sweet son. 

But there’s a deeper reason that has less to do with me and more to do with these fun, perky 20-somethings whose lives are so easy right now.  Their biggest decision next month will be what excuse to invent for leaving early for a pre-St. Patrick’s Day celebration before the bars get crowded.   There is no need to dampen their free spirits with my serious life.
To give them credit, they are all very nice.  One lovely woman and I were taking the same elevator a few days ago.  She asked me if I went to a Super Bowl party.  I told her I watched the game at home with my husband and son.

“Was your son cheering for the Giants?”
“Yes!  He was really into it.” (Not true - he really didn’t care after the first 5 minutes.)

“Is he into football or other sports or is he still trying out different things?”
“He’s still trying out different things…”

“Oh that sounds like fun.”

“Yes it is…”

This woman has a bright smile and an optimistic spirit.  She is dating a sweet fellow and she just met his parents.  Her eyes shine with happiness and hope.  She’s also very smart and will go far professionally.  The world seems to be at her feet. 
I look at her and hope she doesn’t have to experience having a child with autism or any special needs. 

I hate to think of her eyes becoming sad, of the tears, and the sleepless nights worrying and agonizing over what she may have done to cause the dreaded big “A”, the nights scouring the internet hoping against hope that pdd-nos really isn’t autism.  It doesn’t seem fair when she’s such a nice girl. 
I have to wonder if someone once felt like that about me. When I was her age, I snuck out early from work to do the St Patrick’s Day crawl.  Was there a Jackie at the office watching me, smiling at me, and protecting me a little longer from a future over which we have much less control than we think?   

It’s ironic that this young lady may be looking at me and thinking she’ll have a more exciting version of my life one day.  I’m looking at her and hoping her life doesn’t get as “exciting” as mine. 

Keep your spirited smile and your hopeful eyes.  They are my escape and you can stay there with me as long as you like.

Thursday, February 2, 2012

Theory of Relativity

“Interesting…,” said my husband, Donald.  He had just hung up the phone with a relative.

“Laura says that her grandson is being evaluated for a speech delay.”

Given that I crowned the boy’s mother “sanctimommy of the year” (Donald loves that word now), he expected a reaction.  “Schadenfreude?” he asked.

“Absolutely not.”   I could never feel that way about any child or mother in that situation.  But truth be told I had trouble sympathizing.  Not because of my feelings about the mother.  All I could think was, “I’ve met your son.  He’s charming.  He speaks.  He has great receptive language.  You’ll both be o.k.”

In other words, “I’d take whatever it is he has over autism.”
I could already picture it.  She would be a wreck thinking her perfect life was ending.  When her son’s speech reaches age level, she’ll have her “hero mom”’ story of how she overcame some major life hurdle.  She may even commiserate with me as if we’re now in the same club.  I’ll smile like I appreciate her support when I really wish for her simple life.

A wise friend said to me once that every kid has “something,” and it’s true.  When I tell people about James, it’s like the flood gates open up with stories that cover the special needs map.  

One woman’s private school daughter has a mild learning issue that is hurting the girl’s self-esteem.  It was her way of empathizing, but again… I’d love to have her issues.

Then there is my friend with a very gifted son who said that in a way having a gifted child is as hard as having a child with special needs.  Plus, they are going to have to pay through the nose to find a school that can teach a child with his IQ.  Uh huh…  Puleez give me your issues!!
But I also know that I can’t blame people for being out of touch with my life.   I am protective of my son and I make a point of assuring others that my life is o.k.  I don’t want them to feel sorry for my son or me, and I want them to be comfortable around us.

So with the comfort I give them, I also give them carte blanche not to watch what they say.  And even if they did watch, it wouldn’t be good enough anyway.

Don’t tell me I’m a “great mother” – it’s condescending. 

Don’t tell me you could “never do it” – it’s rude. 
Don’t tell me “God only gives us what we can handle” – I’ll smack you upside your head and say, “here (smack!)  God says you can handle this!”

But as I tell Donald, we’d be them if we weren’t us. 

We have friends with kids who have more involved issues than my son, James, and I’m sure we’ve slipped when trying to be understanding.
I posted a photo of James marching in a parade on my Facebook page this weekend.  Some friends with kids like James responded about how amazing it was that he did it.   

Others were probably thinking, “Shut up.  My kid could never do that.”  And friends with typical kids with whom I don’t share my real life angst, probably thought, “so what?”

So we all live together in this world, navigating each other’s complex lives, perspectives, and the feelings that we allow other people to see.  I try to keep my heart open to people and my skin hard against judgments, but clearly I don’t do as great a job as I like.

I have to believe that people are trying to do the same toward me, but they can’t get it exactly right all the time either.  And so maybe we have to give each other some room to judge, to try too hard, to not think, and to get it all wrong – relatively speaking that is.