It's Not Fair

Parents hear "It's not fair" all the time. Most of the time it is merely an aggravation, and responses tend to be something like life isn't always fair, or it all evens out in the long run, or the ever-popular: "you get what you get, and you don't get upset".

James has always been hyper-focused on making sure that everything is divided perfectly evenly, and is constantly worried that he is getting the short end of every stick. We try to make things as even as we can, but it isn't always possible. And unfortunately, he is not able to understand that it all evens out in the end, and he can't reconcile the (many) times he actually gets more with the specific moments he feels slighted .

So I'm used to hearing "It's not fair", and I've been able to deflect it somewhat. Until this summer.

This summer, it has become clear that James is not talking about who got more minutes playing Wii or who got more brown M&Ms.

He means "It's not fair that I have autism".

He has realized that he is different. He recognizes that most things come easily to Johnny, and he gets very frustrated when he can't do those things as well as his little brother. He notices that Johnny runs around the pool, going down water slides, going in the deep lap pool and on the obstacle course, while he stays in the shallow part of the zero entry pool, staring through his clear inner tube at everything going on around him. His friends get bored in the wave pool and go off and play with Johnny. James stays where he is or sits on the steps, watching. He is lucky to have a friend who stays with him and plays the games he loves, but he still notices the ones that gravitate toward his brother, and he wonders why. Now he only agrees to go if that friend will be there.

I don't know how to respond to him, and I don't know how to make this easier for him. This is uncharted territory for me, and I'm completely unprepared.

I've tried explaining autism to both of them ("Mommy, Do I have Autism Too") by highlighting the unique things that James is able to do. I haven't completely dismissed the challenges that James faces, but I've been focused on making sure that he doesn't feel like he is less than his brother or friends in any way, and I haven't adequately dealt with how to react when those situations arise.

I've been avoiding it, in that same way I avoid laundry or cleaning the kitchen. I realize that the longer I wait, the more it will pile up, but I can't seem to take it on. It's just TOO BIG.

His social worker is wonderful, and I know she is going to be a huge help in this new "chapter". I don't even know what to call it - I can't say it is a challenge or an obstacle, because it is his entire life and it is not something that we are going to fix or he is going to overcome.

He is going to face this for his entire life.

He is going to face this for his entire life.

There. I said it.

I think that was the first time since the bleary-eyed early days of the diagnosis that I actually said it.

Now that I've said it, I think I can start working to support him, however I can, and with whatever resources I can find. But unlike those first days of the diagnosis, I know better than to try and take it all on by myself.

I'm going to need your help.

"He Just Looked at Me. He Doesn't have Autism"

We went to see a new pharmacologist to talk about medicine for my son's anxiety. I went through the usual 5 minute intro about our journey with PDD-NOS, anxiety and sensory processing disorder.

The doctor was nice and seemed understanding, but then he said it.

"He just looked at me. He doesn't have Autism".

I think I stammered. I told him I feel blessed that my son is high functioning and tries so hard to make connections with others.  I told him what we've worked on, and how far he's come, and then the challenges he (and we) still face. I thought he understood, but I left feeling uneasy that a neuro-psychologist just casually "undiagnosed" my son minutes after listening to me while watching him out of the corner of his eye.

A month later, we went back for the follow up.  The doctor looked at James, just a few minutes in the room but totally focused on putting together a magnetic game, asking the same questions over and over, and showing an uncanny memory at the placement of random objects in the Dr's office.

Then the doctor looked at me.

"You know what Autism is right?  It is lack of reciprocity.  DO YOU KNOW WHAT THAT MEANS?"

I winced.  It felt like he was yelling at me.

And then the bombshell:

"Are you really attached to that particular label?"

I think I said something like "you can call him a purple people-eater if you want, as long as he gets access to the services that are helping him so much", but I really can't remember because I was too busy screaming inside. 

Screaming at the doctor for not seeing what breaks my heart on a daily basis, but mostly screaming at myself for not standing up to him, and for allowing a person, after 10 minutes, to make me second guess myself and everything I've done to try and help my child.

Instead of slinking out of there feeling sick and guilty, like I just discovered I was either a Munchausen by proxy patient on an episode of "House" or the direct target of Denis Leary's next book, I wish I stayed in that office and said this:

REALLY? Do you think I actually want my son to be labeled with autism? Do you think it makes me happy to watch him struggle daily to fit in? To see how uncomfortable other children are around him when he tries to play with them?  To watch adults get frustrated when he gets in their face and asks them the same question over and over again even though they've answered it?  To have to repeatedly tell him to look at whoever is talking to him, or to continually tell him to answer whatever question has been asked of him?

Do you think I wanted him to realize at the age 8 that he is always going to be "different" from his brother and other kids his age?  To know things that are so easy for his little brother to do will always be challenging for him?  Playing sports, playing with friends, even telling jokes?

Do you think I dismiss the fact that he laughs when other people cry, or that he doesn't understand when people become annoyed with him, or are teasing him?

Oh, actually, yes.  After living this for just about all of the past 8 years, I guess I am "attached to this particular label".

I am attached to it because my son does exhibit that characteristic about reciprocity.   For my son, and many others with ASD,  lack of reciprocity is not for lack of trying.  Although some may try desperately, they are unable to reciprocate without constant assistance and significant effort.  Some of them, like my son, are able to achieve a basic level of back and forth, but they have to work constantly to recreate even a simplistic version what you and I do without even a second thought. 

I am attached to this label because it is a word that has meaning for people who are just getting to know my son, so that they can better communicate with him, and understand the support he needs to successfully reciprocate. 

I am also attached to it because I think it is going to be a very powerful word for my son as he grows, and I believe that he will be able to use the label on his own terms -- as a crutch if necessary when he feels like he is left out or lost, but hopefully more often to help develop relationships that are comfortable for him, with people who will understand and respect him.

As for me personally, I am attached to it because I can use it as a tool to teach others that people cannot be pigeonholed into a 3 word definition in order to understand them, nor can they be "figured out" by observation, and that anyone who tries to do so is lacking in empathy, respect and, yes, reciprocity.

Preserving Arts and Craps

I've been feeling nostalgic since Johnny finished Kindergarten last week, and have been thinking about all the things I'm going to miss as he gets older. 

I'm not sure why it is hitting me so hard, I never felt this way with James.  It could be (and I really hope this is not the case) that a lot of the cute things James did got lost in our memories b/c we were so focused on his progress and therapies, or maybe because Kindergarten lasted 2 years and we were emotionally ready for 1st grade by that point.

It might be that because James didn't speak until later on, and then couldn't verbalize thoughts or ideas at that age, so these Johnny-isms seemed the funniest things we had ever heard. It could be that I wasn't on Facebook and didn't keep a journal (which I totally regret!), so I didn't have the chance to look back and relive those moments.

Or, it could just be that I know I'll never have another Kindergartner in the house (unless he is left on our doorstep!).

Whatever the reason, I keep going back to some images and reminders of things Johnny has said and done, trying to preserve them clearly so I don't lose them like I lose everything else in that black hole I call my memory.

So, more for me than you, here are some of my favorite comments and status updates from the past 2 years:

Favorite Johnny-isms

 "Coughateria", "Chopped lips", "Arts and Craps" and things that "blow in the dark".

Fluffy and Kitty School Moments
- Playing Candyland w/ Johnny and his stuffed kitty. Fluffy is winning.


Fluffy at Kitty School



Kitty school is growing.
Each student has a desk, chair, pencil and eraser.

- It's Dance Party hour at kitty school. Johnny started a "Justin Beaver" chant. 

-There are about 25 stuffed animals in line to see the Vet. I think we have a kitty flu outbreak over here...

Johnny being Johnny

- Johnny: "Mom, how do you spell right?" me: "you mean like take a right at the light?" Johnny: "no, like when you tell your mommy something new that she's never heard of before, ever, and your mommy looks at you and says 'you know, you're right and you are very smart to think that' "



Johnny Multi-tasking

- Johnny just wrote his name in Australian. It is upside down...

- Teacher asked Johnny this morning what he wants to do when he grows up. His response: "I want to do everything, except be a priest".

- My favorite part of today was Johnny sitting down on the steps of the State House and singing "I'm just a Bill, yeah, I'm only a Bill, and I'm sittin here on Capitol Hill" (From the day we went to the State House to support the Autism Insurance Reform Act)

- Johnny Drama just came in the kitchen crying that he really hurt his leg. "What happened?" "I fell! ouch! It hurts!" "what did you fall off of? The couch?"
"NO! OUCH! The FLOOR!"

- Johnny started crying while changing into his pajamas. "Johnny, what's wrong, are you OK?" I yelled running from the kitchen.  "NO!  I got a rug burn putting the pajama pants over my knee!"

-Overheard Johnny talking to his new friend on the playground --
Johnny (in excited, squeaky voice): "Greg! We have exactly the same stuffed animal!"
Greg (confused): "You have a stuffed butterfly too?"
Johnny: "No, I have a gray kitty. But Greg (now using his serious teacher voice) you know why I said we have the exact same animal? Greg, wait. Do you LOVE your butterfly VERY MUCH?"
Greg: "YES!"
Johnny (excited again): "I LOVE my Fluffy VERY MUCH TOO! That is why I said we have the exact same stuffed animal!!"

-OMG, I just looked in the living room and Johnny is dancing to "DJ got us Falling in Love" - on roller skates!

 - Johnny saw something about Cupid and asked who he was, I told him that there was a story that people who got hit with Cupid's arrow fell in love with the person they were with. he said " OH, That is what happened! I got hit with Cupid's arrow when I met Kaydence!" (a girl he became good friends with in his pre-school class 2 yrs ago ;)

Johnny to James on the way to swimming lessons. "Wait, did you say "heart" or "hard"? Was it "heart" like "she stole my heart?"

- Johnny told Tony tonight he believes in God. And Fairies.
Religious Education successfully completed in the Macchi household.

- Johnny: "MOM! There is a BULLY on bus 3-5-9! We don't have a bully on our bus. The cooties come every few weeks though, so that is bad!"


Johnny's been playing with his new file cabinet all day.
I'm waiting for him to start calling the keys "my precious"...



- kids are playing fetch. Johnny is the dog as usual.

James: "someone said the 'S' word on the bus today."
Johnny: "was it the 'upid' or the 'uck' one?

- Umm, Johnny just told me he hears voices in his head that nobody else can hear. I'm wondering if I should take the File Cabinet of Fun story more seriously...;)

- Johnny just said "Mom, life keeps getting gooder".

And the moment that makes me appreciate "Johnny being Johnny" more than any other and realize I have a lifetime of these to come:
- Just watched Johnny lead James all the way around the pool club by the hand to show him where our chairs were. Possibly the sweetest thing I've ever seen.