Tuesday, July 28, 2015

Friends...How Many of Us Have them...?

I always have.
In Nursery school there was Cindy. She and I would play 'Happy Days', strutting around the place like we owned it. I was always Fonzie (naturally) and she would often be my girlfriend but sometimes Pottsy.

In Kindergarten there was Kobe and Gabe. When Gabe moved to Australia and Kobe didn't show up for first grade I remember feeling lost. Iris, Lisa, Susie, Pninit and Judy quickly became my posse and Ari (the Principals son- I don't fool around) quickly became an important partner in crime.
 In 5th grade Adina and I became best friends being the top two girl dodge ball players in the school.
High School was all about John, Tessa, Brian, Rachel and Carly. College meant actually living with your friends and Maia, Melissa, Hannah, Winter, Alicia, Anna and so many more filled me with as much joy as the learning and playing. Through it all were camp friends, Josie, Zoe, Polly, Sam....

California meant keeping up those college friends while making new ones from work, friends of friends, random dog park conversations, and the process of creating community through trauma and joyful moments.

I believe more than most things, that connection has kept me alive. Through being teased and bullied, coming out, through motorcycles & horses, and of course through my son's diagnoses and growing up challenges, it's been the people in my life that have gone beyond keeping me grounded, they have kept me thriving.

It has been one of the hardest things to watch my son have the opposite experience; until now.

About 6 weeks ago Simon started camp at the YMCA in Berkeley. He went there last summer for one week before starting another camp for the entire summer.  8 Weeks of Camp Kee Tov was spectacular for him and we saw him grow in leaps and bounds. He loved his counselors. He loved the singing and the Ruach (spirit) of it. He connected with some of the older kids and even had a day or three of hanging with a boy his age.

This summer has been different. Simon went to Y Camp for the week after school ended and then we headed off to Yosemite. Simon came home a week early and got right back to Y camp without missing a beat (ok he missed one week). He was signed up for 4 more weeks and then we had registered him for the last 4 week session at Kee Tov given how great a time he had there last summer.  In my mind, we were kind of waiting for Kee Tov. They had done such an amazing job job last year working with his quirks and he clearly had great love for that place.

I forgot to mention that when I had dropped Simon off at Y camp during that first week of the summer, I asked to talk to his counselors and Unit head just to give them a heads up on heart stuff and autism stuff.

DJ listened carefully to the heart stuff but then started smiling as I went into the autism stuff. She said she worked with kids on the spectrum during the school year for Oakland Unified and not only did she get Simon, she was going to guarantee right then and there that Simon was going to have a great summer. She gave me her cell number and sent me on my way assuring me that she would be working closely with our ABA team and Simon's counselors.
I left thinking that Simon would be in good hands until he got to get back to Kee Tov.

A week went by and I heard at pick up from one of his counselors that Simon was actually playing with one of his peers. Another girl in his group. It was sweet but I didn't think much of it.
The next day, when I went to drop him off in the morning, DJ made a beeline for me and said how amazing it was to watch Simon make a friend. 

"I know" I said skeptically. "I heard about **** from his counselor yesterday."
"Yeah, they've played some but you know Niara is his best friend" DJ said.
"Oh, I hadn't heard about her" I say still thinking that these are fleeting moments of other kids being able to hang with my son who cannot sustain interactions with his peers.

DJ shakes her head and takes me by the hand leading me out of earshot of Simon- who listens to everything.
"No, I don't think you understand. They love each other. They walk around holding hands. She asks him to come swim with her and he goes! He sits next to her every lunch time. They are like two peas in a pod. It's been like this all week."

She is speaking low and slow so I will get it. She gets it. She wants me to get it.

It's sinking in. I am skeptical but I see her intensity. Three weeks have gone by since that conversation and each week has brought with it pictures, stories, and a slow settling in belief.  My son has his first friend.

I have watched them play at pick up. She meets him where he's at. He meets her when she makes bid after bid for his attention and ladies and gents....she holds her own when he engages her in StarWarsMonstersTransformersBarbieMinion battles. It's amazing to watch. I feel my heart inflate like a Mylar balloon and then pop like a birthday Pinata!

It was hard to think about them not seeing each other for the rest of the summer.

When we had a week left before the start of Kee Tov, we gently asked Simon if he wanted to stay at Y camp or go to Kee Tov. Two or three times we very clearly laid out the options. Go to Kee Tov or stay at Y camp with Niara? Each time Simon chose Kee Tov. It was unclear to us that Simon understood but we didn't have anything else to go on.

Simon ended his time at Y camp on Friday with a sweet send off, lots of hugs and an all camp salute.

Monday arrived and Simon and I are driving to Kee Tov where he'll meet his new camper group and counselors.  I'm telling him how excited I am to be taking him to camp and he's smiling. Then comes the question that breaks my heart. "Will Niara be at camp Kee Tov?"

This is the first time that he's asked a question like this...ever, but not the first time that this topic has come up. Remember just a few sentences back when I told you, dear reader, that we'd very gently but clearly asked Simon to choose?  Each time, we tried to explain that Kee Tov meant no Niara or DJ or so and so. We put it in positive terms, we put it in negative terms, I used hand gestures, I thought I was clear. Still, until this very moment, it was clear to me that Simon had not understood.  The question and connection had to come from him.

I said "No my love, Niara is going to be at Y camp and you are going to be at Camp Kee Tov."

He was quiet.

When we got to drop off, Simon still hadn't said much and even when we met his counselors and unit head there was something missing. Folks from last summer were thrilled to see him, his counselors were very thoughtful and listened closely as I gave the 'Simon Spiel' but as I walked away the Boy did something that I have never seen before.  

He followed me.

If you know him or have read this blog at all, you know this is not typical. Simon has really never shown any separation anxiety (or stranger anxiety either). He plows headfirst into most new situations especially if he has the attention of interested/caring grown ups.  I chalked it up to the chaos that accompanies any first day of camp and got him hooked into a game of GaGa.  There were no tears, no pulling at my hand not to go, and I even got a weird kiss goodbye.

I left with a sinking feeling right alongside a hopeful feeling that things would be all right. This was after all, an exceptional camp with exceptional people and we had had an exceptional summer last year.

No calls during the day kept that feeling of hope going right up until Simon stepped off the bus at 3:45. He looked fine but wasn't smiling. He wouldn't answer any questions about how the day went and got really agitated by the 3rd attempt on my part to find out even a little of what the days activities had been. By 5pm it was clear that it had been a really hard day-his ABA therapist called to discuss her surprise at Simon's angry behavior at camp.

The short of the rest of the story is that Simon is back at Y camp. Niara and Simon are back together. Jaime and I are learning more and more about our son and how consistency is key.

The long of it is, connection is what I want most for him but that's just me. He will have a lifetime of camps, schools, people who can meet him where he's at, affinities that will serve him, some that won't, love in his life that will be unconditional and loves that will come with conditions that he can or can't meet, maybe some relationships that will last longer than expected or wanted, some that won't, and summers that will be filled with swimming, field trips, and hopefully Niara and many more like her.

The two hours that I spent on phone last night frenetically brokering refunds and reregistrations are totally worth it when I see Simon's eyes light up as we head upstairs to the sign in at the Y. After a quick kiss goodbye he is off and running, feeling home.

Summer Lovin'

Cheering/Chillin' at the A's game

Family Time!

Nothing like Cousins!

Pontoon Boat fun!

Mom! I can totally drive this thing.

Ok then.

 Just like his Mommy!

BFF's at play 

I just love these next two. She is wailing on him and he loves it!

Fallen asleep on the way home from a field trip.

Sweet sweet summer time.