Thursday, December 29, 2011

Pass the Cookies

“Does he always eat so many cookies?” asked Donald’s cousin as her face became wide-eyed and her voice took on an innocent tone. 

“Oh, no,” I stammered.  “He rarely does, but it’s a holiday and blah blah blah…”  I don’t remember what else I said.  All I know is that I gave the appropriate answer expected of any good mother who cares about her child’s welfare.
I tried to shrug it off but by the time we left I was aggravated.  The next morning, I was officially mad – at myself.  Mad that I let myself feel like I owed an explanation.  Mad that I felt the need to lie to give an answer that would prove to her satisfaction.

I can’t make people change their behavior, but I don’t have to engage with it either.   I vowed that next time she or anyone asks me a question drenched in judgment that I would just look at them and not answer.
That “next time” turned out to be a few weeks later at my mother’s and the “anyone” was my sister-in-law.  At the end of the evening, her eyes were riveted on my son, James, as he was munching on the desserts.  At one point I said, “James, I think you’ve had enough.  Why don’t you go play in the den?”  When he left the room, I suggested we move the desserts.

My sister-in law nodded to me emphatically, “Yes.  I noticed; I was just going to say the same thing.” 
There I was again – stung by a sanctimommy bestowing judgment on a life she could never understand.

James has always had a sweet tooth as does my husband, Donald.  Since James has no friends, Donald makes sure he is James’s best friend.  On Friday nights, they eat pizza, ice cream, and brownies and watch Heroes night (3 hours of heroes programs on Cartoon Network). 
It’s their night and when I see them on the couch, laughing, watching TV, eating junk food and chatting about the characters, I’m so happy for my little guy who is smiling and at peace with the world.  So, yes, we live by different rules and don’t have the time or the inclination to count each cookie.  We prefer to count James’s smiles.

This week, we saw the cousin at a family function.  She has a 4 year old and a 2 year old and they are not allowed to drink soda.  I know because she said it about five times before we sat down to dinner.  When I realized she was directing the soda decree to me, I told her that James doesn’t drink soda.  “Oh good for you,” she said approvingly.  (Gee thanks.)

After the food was served and people started eating, James said, “Mommy, aren’t we going to say prayers and give thanks for our food first?"  I quietly reminded him that when we are at someone else’s home and they don’t say prayers that we say it to ourselves.  “O.K,” he said as he started praying silently while everyone waited until he finished.  He looked like an angel and you’d think I bribed him with 100 cookies to get that moment. 

On the way home, Donald blurted out, “Not for nothing, but I’m glad James said that thing about praying.  I don’t care if it embarrassed anyone.  Laura always acts like she’s so perfect and the rest of the family treats her like she’s the authority on parenthood.”  

Not for nothing, but I didn’t know Donald was paying attention so score one all around for Team Jackie and the man upstairs.

Yes, my family is not perfect and we show up at your home with warts and all.  But at least my son was raised to thank the good Lord for all of that delicious, imperfect food he puts in his mouth.  And I thank God for his smiles.  Amen.
Next stop:  my sister-in-law’s dinner table. 

Thursday, December 22, 2011

Do You See What I See?

That’s a question I want to ask most people who see my son, James, throughout his day.  I don’t bother asking because I have a front seat to the James they do see. 

I’m there at karate class when they see a boy who pays attention and is totally “on” for about five minutes before he looks off and starts talking tangentially, twirling his hair, and occasionally plugging back in if he thinks he can entice the instructor to talk with him about Ben 10.

I have report cards that document his lack of focus, his social deficits that are of “significant concern,” and his reading comprehension that “is not approaching grade level.”

I’m with him at the store when he sees a boy his age and immediately launches into a scene in an episode of Generator Rex while the boy looks at his mom and rolls his eyes.

I’m also at home when it’s just Donald, me, and James, when the demands on James’ sensory system are low, and when he feels most comfortable in his skin.  These are the times when I wish people had a front row seat to what I see.         

I see an 8-year-old boy who has a smile that lights up a room.

I see a boy who runs up to me beaming saying, “Mommy!  Do you know what time it is?!  It’s HUGGING TIME!”

I see a boy who says, “Daddy!  Let’s drive mommy crazy!” and then breaks out into a silly song, purposely singing it off key and incorporating wacky hand gestures.

I see a boy who loves to joke around.

I see a boy who likes to make up songs.

I see a boy who likes to tickle and be tickled.

I see a boy who worries when he thinks Donald and I are sad and tries to make us smile in his own way.

I see a boy who comes home from school absolutely thrilled that another boy wanted to play the same game as him so now they must be friends.
I see a boy who pops in a CD and says, “Mommy, dance with me!”

I see a boy who will get hyper and silly until it becomes very aggravating and then later in a more calm moment, think about it and say, “‘Mommy, I’m sorry I frustrated you.  I didn’t mean to.  I was just having fun.”

I see a boy who sits on the couch with his legs crossed just like Donald does as the two of them eat junk food and watch Heroes Night on Cartoon Network every Friday night.

I see a boy who doesn’t question that there is a Santa Claus.

I see a resilient boy who works so hard to figure out and deal with the world and still comes out of it smiling.

I see an amazing kid.

I wish more people could see what I see.  But James has me and Donald to see him and appreciate him and let him know that he’s special, and loved, and safe when he’s with us.  And when we’re home with him – just being a family – we feel safe too, safe from judgment, safe from having to work so hard – just like James does – to be a parent.

On Christmas morning it will be me, Donald, and James.  James will come out of his room, he’ll look at the presents under the tree, his eyes will light up, he’ll smile his wondrous smile, and say “He came!”  

That’s what we’ll get to see.  It’s a shame everyone else will miss it.

Merry Christmas James!

Thursday, December 15, 2011

Thank You Santa

Santa Claus is coming to town.  But before he does, his “helper” is coming to a mall or department store near you.

Parents line up with kids, strollers, and baby carriers to take part in the annual tradition and experience the magic of watching their child sit on Santa’s lap and capture that moment in a photo.  These moments aren’t always as magical as everyone dreams but the photo will tell the story we set out to tell. 

Donald and I didn’t have a photo or story to tell until James was four.  Until then, he wasn’t related enough to visit Santa Claus.  When we finally took him, we had no expectations.  We were so skeptical about how he’d react to Santa that we didn’t dress him up because we knew we might have to stare down disappointment.   As a matter of course, James brought his little Ziploc bag of plastic animals that he carried around with him at all times. 

James didn’t seem to understand what Christmas was or that he was supposed to ask for gifts.  Seeing Santa wasn’t at all important to James, but it was very important to us.  We wanted that picture of our little guy sitting and smiling – the picture that meant we weren’t so different from everyone else.   It had been two years of living and breathing autism and we really needed that picture.

We held our breaths when James walked up to Santa and sat in his lap, showed him his little animals, and smiled for the photo holding his little bag.  We couldn’t believe it.  It was as if we had dipped our toe in the typical world. 

Never mind that he didn’t care, we had our picture.  We bought the deluxe photo package and I don’t remember how many frames so that we could share our magical moment with grandparents, aunts, and friends.  

We’ve continued to visit Santa each year.  James is never dressed up because we don’t take anything for granted.  He dutifully gives the smile he thinks we want him to give.  It looks forced and the photographer will show us the shot and ask if we want another one, and I say, “No, that’s fine.  I’ll take this one. “

This year, James is 8 and still believes in Santa Claus. He was even excited to go see Santa and had a list of toys he wanted.  So wearing his carpenter jeans and a loose thermal shirt, we set out to our usual department store

James was patient on line.  When it was his turn, he walked right up to Santa and spoke to him for about 30 seconds before he turned his back, started twirling his hair, and saying things I couldn’t quite understand.  I hovered closer to hear what he said. 

Santa was a nice guy.  I was certain he picked up that James might not be typical.  I tried to prod James to look at Santa while he was talking to him, but Santa was quick to say “it’s o.k., he’s talking to me and I hear him – that’s all that matters. “
Thank you Santa.

When it was time to pose for the photo, James stood next to Santa.  His jeans were baggy, one shirt sleeve was rolled up and one hung past his hand.  He smiled his “cheeeeezze” smile and “snap” there he was looking lanky, silly, messy, and happy. 
As we were leaving, I could see the other families on line – mostly with younger kids who were dressed up in sweater vests and holiday outfits  – all waiting for their perfect picture.

I looked at them all and thought, “You all seem like such nice people.   I hope you get your perfect picture.  I got mine.  Thanks again, Santa.”

Wednesday, December 7, 2011

A Green Dot Day

This year, James’ teacher (who we love) sends home a sheet every day with a large magic marker dot about the size of a quarter that is either green, yellow, or red along with a space for us to initial and acknowledge that we saw the dot (as if we could ignore it).

A green dot means that he was able to complete his assignments without excessive redirecting, he was mindful of class rules, he was respectful to his classmates, etc...   A yellow dot means it was a little tough for him to get through the day.   A red dot means there was a notable problem.
For James, who sees the world in terms of good guys and bad guys, a green dot is a good day, a yellow dot is a medium day, and a red dot is a bad day.

For Donald and me,  a green dot makes us happy, a yellow dot puts us in purgatory (while we wait for the final verdict in the next day’s dot,) and a red dot sends us straight to despair.
We live for the dots.

The first one home waits for the other’s call:

             “How was his day?”

            “He got a green dot.”

“Oh good!. (Whew!)  See you soon!  I love you!” (Yes we even feel the
love for each other when there is a green dot!)

“How was his day?”
            “He got a yellow dot”.

              “Why?  What happened?  Did she write a note?  What does it say?  Did he
              say anything to you??  Put him on the phone!”

You can imagine the conversation when there is a red dot…

Bless his teacher’s heart, she has no idea that our days have become defined by the dots.  A red dot day becomes our red dot day and sets the tone for the rest of the day and night.  Despite our forced smiles, we can’t hide the fact that we’re not happy campers.  Even our significantly socially delayed son picks up our vibe.

We probe him at dinner, but he’s not budging.  He knows what’s up.   He just says, “I don’t want to talk about it.”  We wait five minutes and try a new way to get information…. ”so were you in the lunchroom when you started getting angry at Tyler?”  

“I said I don’t want to talk about it!”

Donald and I look at each other and give up.
Well-meaning friends with typical kids often say things to us like, “Oh Johnnie obsesses about SpongeBob too.”  But their kid’s version of obsession is different than my son whose mind lives inside that pineapple under the sea, who wakes up and thinks about SpongeBob, Patrick, and the Flying Dutchman and thinks that if another kid in his class doesn’t want to act out SpongeBob during free time then he’s a mean kid and not his friend and worthy of a kick in the shin (which, in turn, is worthy of a red dot).

Friends can shake off bad days easier than we can because the stakes aren’t as high as they are for my kid.  I want him to be able to learn, to form relationships, to be loved and appreciated by people.   A red dot in class means a red dot in life.

James hasn’t gotten a red or yellow dot in few weeks.  We spoke to his psychologist and found that it’s not so much that he’s had a social/emotional leap, but that our craziness drove him to it.  Simply put, “It makes mommy and daddy sad when I don’t get a green dot and I don’t want them to be sad.” 

Hmmm…is that a hint of empathy I see?  Now that’s a green dot day for me!

Thursday, December 1, 2011

What they said, what I said, what I should have said

What the woman with the gifted child said:   In a way it’s as hard having a child who is gifted as having a child with a special need.

What I said:   Sure.  I can see that.
What I should have said:   No, it’s not.  My son may never live independently, may never have anyone love him, may never have a friend.  Your son will.

What the mom I know from yoga, who has a typical child, said (or rather blabbered about):    Everyone thought my daughter would play the lead in Carousel but they picked someone in a lower grade which goes against school tradition and the school kids and the parents were in an uproar and my husband, Mike, and I think it’s all so ridiculous that everyone made such a fuss…

What I said:   Well it sounds like you have a good attitude but it’s all a shame everyone else got so upset.
What I should have said:   Is everyone else at the school really so upset or are you - because methinks you doth protest way too much.

What the well-meaning special needs soccer coach said:   Tell me if I’m out of line, but James seems to have a lot of anxiety.  Sometimes medication like Zoloft can help a child be less anxious.  I can tell you it’s worked great with some of the kids I’ve seen.
What I said:   My husband and I have actually been discussing this with James’s team.

What I should have said:   This is James on medication.

What the Sunday school teacher said:   We’ve missed James at Sunday school.
What I said:   It’s hard to get James out of the house on weekends.

What I should have said:   You are very sweet, but we both know that he can’t handle mainstream Sunday school and you shouldn’t have to babysit him for an hour every Sunday.

What my co-worker says:   You look tired.
What I said:   Oh... I guess I am.

What I should have said:   You say that to me at least once a week.  Please stop.

What the school said:   We’d like to make an appointment for you to come to school and talk about how James has been doing.

What I said:   Oh, o.k., sure.  When would you like me to come in?
What I should have said:   Damn!

What the developmental pediatrician said:   James meets the criteria for pervasive developmental disorder- not otherwise specified.
What I said:   My husband and I have been doing a lot of research and we suspected that this was the case. 

What I should have said:   We’ve done exhaustive research but I was still really hoping you would tell me that he just has a few delays and that with some therapy he’ll be o.k.

What the saleswoman said:   He’s such a spirited child and he seems to know so much about Star Wars.
What I said:   Yes he is and he does.

What I should have said:   He has autism.