Monday, October 12, 2015

A Decade

On October 22nd, Laura and I will have been married for a decade.  Ten years of wedded bliss. And trauma and intense personal growth and community building.

We decided to throw ourselves a party.  A big one. Like 100 people big.  Cuz...go big or go home, right?

That seemed like a great idea when I booked the location 4 months ago, before I stumbled into ye old pit of despair and before Laura herniated a disc in her neck (more about that soon, I'm sure, as she's scheduled for surgery a week from today).  About 3 weeks ago, I had a total and complete freak out. Like, "I don't care if we lose the deposit, I want to cancel the party" freak out.  An "it all feels like too much work and something will go wrong and it will all be ruined and I'm just going to end up disappointed and you're so grumpy from being in pain and on pain meds that I'm not even sure I can pull it together to LIKE you at our party so let's just call the party off RIGHT NOW", kind of freak out.

That was actually the night I figured out I was depressed, because one thing I know is that my life is better with Laura in it and I want the world to know that and we have an amazing community and I love food and I instantly fall head over heels again when Laura does her adorable faux goofy-but-actually-really-hot dance moves, so if I didn't want that, then something was seriously wrong.  It was a kind of useful freak out, as freak outs go.

So...we had the party.  And it. Was. Perfect.  Not disappointing.  Not even a tiny bit.  A few folks I really hoped would be there didn't make it and I hardly got to talk to the ones that did, but there was enough food to feed an army and bands of kids were running around wild and happy and the adults all looked relaxed and smiling and dancing (thank you Kris Woolery for the most bad ass playlist!).

One thing I hadn't really planned was clean up.  I figured I would just do it myself.  I tells you a lot about my psychology. As the end of the evening approached I started looking around and realized how much work it was going to be.  Before I could start to get into work mode, our dear friend Saun-Toy grabbed Laura and I and the 10 or so friends left. She pulled us into a circle and proceeded to start the most beautiful shower of love and affirmation for us.  After folks gifted us with some of the most powerful and lovely words I have ever received, a group of 3 stayed and clean up was done in 20 minutes. I didn't have to ask for help.  It just...happened.

Our last friends walked out the door as my new favorite song came on - "What Do You Mean" by Justin Beiber (I  have no shame. I know I turn 40 in 3 months,but I'm a Belieber.  Whaddya gonna do?).  Laura grabbed me for a slow dance and I melted into a puddle of tears.  When I pulled it together I managed to squeak out "I just feel so SEEN.  It's the thing I wanted most growing up and it's really happening.  They really see us and what we're trying to do".  As Laura kissed me softly on the forehead and drew me in closer, I was filled with an overwhelming sense of contentment.  I haven't felt that feeling in...years.

As we close out an incredibly difficult decade, I am finding myself feeling so hopeful about the decade to come. During the silent meeting we had the morning of our party, an analogy came to me that summed up what I think this last decade was about.  Laura's grandmother was a sculptor and she described sculpting not as creating something, but taking away the excess so that the form could show itself.  I feel like what has happened over the last decade, starting with Laura's head injury a few months before our wedding and continuing through all that it's meant to be a parent of a medically fragile kid, have revealed both who we are as a couple and who I am as a person.  There were a few places where we got gouged too deeply, FOR SURE, but mostly I'm realizing that this decade was about clarifying who I am and what I stand for and what is important to me and the same for us as a couple and as a family.

My vision for the next decade is that life will smooth out those rough edges left from the first pass, sand away the deep gouges and buff us with gentle strokes until we shine.  Cuz, if life comes at me with another chisel anytime soon I'm going to have to kick some serious ass.  I'm serious.  Hand to hand combat.

Otis and Simon's Godmamas lookin SHARP!

There was another food and drink table besides this!

Me and my Papa and his too-cool-for-school pants


Me and my Mama

The fabulous Cherry

Who says parents of kids with special needs can't have a good time?!

Parental units

I don't even know what is happening with Laura's face here.  But Pete looks lovely!
Simon's Dunkle Mike!

Cousins Uma and Girija who travelled over an hour to be there!

Girls dancin!

Tuesday, September 29, 2015

Depression Is An Asshole

It really is. It's the annoying friend of a friend that crashes on your couch for a night and ends up staying for years.  It stealthily snitches fistfuls of joy when you've turned your back and holds it's hands over your eyes when you're trying to see the sunset. It's the kill-joy guy that shoots down every good idea you have and nods with a smug "yeah, sure you are" expression when you say you're going to get up off the couch littered with junk food wrappers and go do something fun.

I realized last week that I'm depressed  I've had moments of feeling depressed over the past 7 years, but always chalked it up to the incredibly depressing, stressful situations we kept being in. Now that the dust has mostly settled, I'm realizing I'm still overwhelmed/un-enthused/disappointed-in-advance about almost everything I set out to do.

It threw me to realize that what I'm experiencing is depression because my go-to concept of depression is severe, clinical, debilitating depression.  I don't feel despair. I don't feel angst.  I don't feel suicidal.  I just feel...bored.  Like nothing is interesting.  Like nothing  is going to work out or be what I hope it will be, so why bother trying. Once I articulated it out loud to someone the other day, the lightbulb went off.

It was great, actually to realized that the problem isn't my life, it's my feelings. THAT I can do something about. When Mr. Wah-Wah starts up, I've started to think "that's just the depression talking" and sometimes the bad feelings blow away like fog.  And...sometimes, not so much.  But sometimes is better than never.

I was watching a video of a war veteran today for work (I now do policy work related to homelessness) and there was something about the flat expression on her face that made me start to tear up.  I recognized that face. That's the face of someone who has been through trauma.  At one point she said "you can't come back from war...and just be a civilian, be normal again. It's not possible." Sitting at my desk, I heard myself say out loud, "EXACTLY". My outside face doesn't look like hers, but my inside one does.

The more time that passes, the more I realize the long-term effects Simon's medical trauma had on Laura and I. I don't know what war feels like, but I know what the unrelenting threat of death feels like and I think they might be cousins.

The hair-trigger fear that used to flare when Simon got the sniffles or I smelled hospital soap on my hands has quieted down, but the unshakable feeling that I shouldn't get my hopes up because something disappointing/traumatic/upsetting/frustrating will likely happen is borne of those years and years of the steps back between the steps forward.  Yes, we moved forward and Simon is a walking, talking, playing, joking, eating miracle, but those backwards steps back have taken their toll.

In our Cardiomyopathy Listserv, we often joke about how the majority of us parents are on anti-depressants or anti-anxiety meds or should be. For a long time I have thought that because depression is expected in our situation it should be tolerated, but I think I'm getting clear that the Debbie Downer in my head needs to take a hike.

I have some good supports in place that I need to make better use of, including writing on this blog. If I have learned anything from the experience of parenting a medically fragile child it's that naming the hard, scary stuff out loud takes some of its power away.

Over and out.

Tuesday, August 4, 2015

The Stork is Coming!

 Every once in a while, someone will ask Laura or I if we plan on having any other kids. The answer has always been a definitive "No".  Some days my answer is "Hell no!".  I adore our kid but he is the work of one and a half kids and we're barely keeping it together as it is.  The only way we're able to keep it all together is with the absurd amounts of support from our family and friends.  Particularly Andreana and Joan, Simon's godmothers.

I did not grow up in a religious family so when we started talking about having Godparents for our kid, I thought of it mostly as "these are the people we've decided should take in our kid if we both get hit by a bus".  I had no thoughts of what Godparents might do beyond show up in my hypothetical tragedy.

It's just as well I didn't think too much about it because I couldn't begin to imagine all the ways Andreana and Joan have showed up for our family. They logged countless hours in the hospital with Simon when he was a baby. They are the ones I called to take Laura to the hospital at 3 am when she was having a gall bladder attack so that I could stay with Simon. They learned how to do tube feedings and give meds and changed diapers for YEARS.  They are the only other people besides my mother who have taken him on overnights.  They are the first people we call when we have a sudden pothole in childcare and there has never been a time that they turned down a request unless they absolutely had to.  They are as close in with us as one family can get to another.

Another thing to know about these two is that they have been trying to have a child for years.  Not one or two years.  YEARS.  They have both endured expensive, painful, unpleasant infertility treatments, paid crazy fees to adoption agencies, been grilled and inspected and assessed by government officials to determine if they are "suitable".  It's been grueling.  So grueling that they were getting really close to saying "I give" and being done with the ceaseless brutality of trying to become parents in the face of countless obstacles.  So close they had almost set a firm deadline for the date the grind would stop.  And then....

And then some magic happened.  Out of the blue, the birth mother of their dreams picked them.  Oh, by the way, she's due In less than 2 weeks!

Because of the tight timeline, our beloved framily members are facing unexpected costs, including a hefty out-of-state fee from the birth mother's adoption agency that can normally be avoided by having the birth mother come to the state of the adoptive parents, cross country travelling when you're 8 1/2 months pregnant!

As a tiny way of helping give back to these two amazing women who are at the very core of Team Shimmy and helped us and Simon all stay alive, we have started a Gofundme page to help raise money for their additional costs.  If any of you readers have been wondering about concrete ways to help Team Shimmy, here is your chance.

These two people define what it means to show up for someone else.  I can't wait to get a chance to try to balance the scales when the newest member of our family arrives.

Squeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!! We're having a baby!!!!!!!!!!!!!!!!

In the courtroom just after I adopted Simon

At our wedding at the hospital 

At the hospital when Simon had ear tube surgery
Smoochin with Auntie Dre

At city hall, marking Joan and Andreana's domestic partnership

Goo goo eyes with Auntie Joan


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.

Saturday, July 25, 2015


Simon has his first bona fide friend!  She is a fellow camper at the YMCA camp where he has been for the last 4 weeks.  This is his first friend and she is actually his age!  Annnnnd, twice his size. Seriously. They are like the polar ends of the size chart cruising around. 

They are like puppies together- walking around holding hands, playing, wrestling, whacking each other and giggling and sometimes in a puppy pile snoozing like this:

It's been so so sweet. Tragically, Simon starts another camp next week.  We debated canceling the 2nd camp so they could stay together but he wanted to go to the other camp.  I'm nervous to see if he really understood that it meant he was giving up his friend.  Methinks he doesn't really get it.  

We've sent a letter to her mother via a counselor with our contact info and have our fingers crossed we will hear from her.  

Amazing milestone!!

Wednesday, July 1, 2015

A New Chapter

Tomorrow is my last day at the job I've had for the last 6 1/2 years.  The new job I will start on Monday is pretty much my dream job (policy work for a county health department Homeless program) so I've been a little confused about some of the hard feelings I've been having.  This morning it hit me.

In our documentary, at one point I say something like, "there are two things I am proudest of in my life.  One is my relationship with Laura".

The other one was getting the job that I will be leaving tomorrow.

For reasons that will become obvious, I couldn't blog about what was happening while it was happening. I feel like enough time has passed that I can tell the story now and hope that the telling will help heal some of the tender spots still left.

When Simon got sick, I was in a job that I had had high hopes for. I was on the fast track to move up quickly and, though I was feeling increasing pressure to put in more hours and was less and less sure I wanted to be there long-term, it was a perfectly good job.  Things started to get a little bumpy when I told my boss I would be taking 6 weeks of maternity leave when Laura gave birth but I didn't make the connection between that decision and the increase in pressure from her until much later.  Simon was born and the heat started to turn up more, but it was managable.

But when Simon got sick, all hell broke loose.

I asked for 2 weeks off the day he went into the ICU as we tried to determine if he would live or die. When it became clear he was hanging on but really sick and still unstable, I asked to work part time for about a week.  At the end of that week, I met with my boss to discuss options, including dropping to part time for a few months and/or working remotely for a day or two a week.  No dice.   Not only no dice, but I was told that if I dropped to part time, there was no guarantee that I could have my job back.  This was a BIG problem because we had also realized that Laura would not be going back to work anytime soon.  Our family was completely dependent on me keeping this job.

During that conversation, my boss ACTUALLY said to me, "I think coming back to work full time would be great for you.  A few good wins under your belt at work will really help your spirits".  My newborn was in the ICU with a life threatening disease and I was being advised to lean in at work. By the director of a women's health center focused on supporting new mothers and their newborns.  I almost laughed in her face.

Shortly after that meeting my boss set up a meeting with HR.  I was really looking forward to the meeting, naively assuming that it was called so that we could talk about possible options to help me support my family AND continue to do good work for them.  Thank god I had lawyered up by that point because it was a nightmare.

The HR rep started the meeting by saying, "I didn't think it was legal for you to use the Family Medical Leave Act for the time you've already taken off [when Simon got sick] because you were just providing emotional support [to Laura] but I did some research and it turns out that it's okay".  I was so in a state of shock from everything that was happening that my lawyer had to point out the insane homophobia in that statement (ie, Laura is the real parent, you are just some person helping her out in the hospital, instead of me being a full parent there to be with my son while he was critically ill).  It only went down from there and ended up with me being presented with document saying I was on probation, despite my stellar performance review 6 months prior.  Again, praise to my lawyer because she had warned me not to sign anything in that meeting.

I stalled on signing the document for as long as I could while I started madly searching for new jobs to apply for. There was nothing, nothing, nothing and then, like a shining star falling from the sky, a job popped up and the name on the posting was a former colleague. Within a week I had an interview scheduled and I was able to see the light at the end of the tunnel.

The morning of the interview, Laura and  I stopped by the hospital to see Simon as we did every day before I left for work.  Usually he was happy and chatty or still dozing but that morning he looked dead.  Literally, he looked dead.  He was grey and barely moving and could hardly open his eyes when I anxiously cooed good morning to him.  His nurse appeared immediately and explained that he had started to run a fever in the middle of the night and that they weren't exactly sure what was going on.  Not wanting to leave Laura in the middle of a crisis, I offered to reschedule my interview for another day.  She grabbed me by the shoulders and looked me right in the eye and I got it.  We needed me to get this job and we needed it badly.

I worked for a few hours and then left for my "appointment". By some miracle, I was able to be friendly and chatty and articulate during the interview.  I returned to work feeling numb and stunned and hopeful.  At about 3 pm , Laura called me and I could hear the terror in her voice.  She gave me Simon's temperature in Celsius and said I should come to the hospital.  I was so afraid of getting fired on the spot that I decided to talk to our manager (not my boss) about whether or not it would be okay for me to leave.  When I told the manager (a former nurse) what his temperature was, her face blanched.  She said, "Jaime, that's 106.9 Fahrenheit!  He is really, really sick.  You have to go right now".

Shortly after I got to the hospital, he started vomiting and pooping what looked like coffee grounds. It turned out that he had been started on antibiotics to fight an infection of yet-to-be-determined origin and the drugs had interacted with his blood thinner.  His naso-gastric tube had irritated his stomach lining and he had developed a GI bleed so significant that he was moved back to the high intensity section of the ICU and given a blood transfusion.  The next day they determined that he was septic with gram-negative bacteria which are the worst kind- the bacteria are basically like little nuclear bombs that release super toxic waste when they die.

I forced myself to go to work the day after this terrifying incident and prayed with everything I had, to anything and anyone that would listen, to get the new job.  A few days later, I got a call for a second interview and shortly after that, got the job. The rest is history... (The Department of Fair Employment and Housing took my case, identifying at least 3 separate violations, but my employer had been very careful not to leave a paper trail so there was not enough evidence to move forward).

It's been so intense to realize how much has changed since those awful days when I was so desperately trying to get this job I'm now leaving.  It ended up being the perfect job. I had a supportive workplace and boss, work I loved, time and flexibility to support my family- so many things that were exactly what I needed at the time.

Today I notice that while I still have scars, I have healed and grown enough that I'm ready to move on and stretch myself.  I can't wait to see what this next chapter holds...for my career and my family.

Monday, May 25, 2015

The Stormtroopers Are Crying

I had one of the most profound parenting experiences of my life last night.

We've been trying to get Simon started on the Harry Potter stories, thinking the story of the quirky boy will resonate with him and that the ultimate bad guy will hold massive appeal. We've told him about Voldemort to entice him, but it's been rough going, because we're only about 30 pages in and it's been too slow for him.

Last night  I read a few pages but we still didn't get to anything juicy. When I stopped reading and turned out the light, Simon started to get really angry.  He wailed and insisted that he wanted me to keep reading and hear about Voldemort. I quickly realized the feelings he was showing were way bigger than warranted for the situation, so I decided to try and give him space to show whatever was going on.

I kept gently saying "We're done reading for the night honey.  We can read more tomorrow". He started wailing loud enough that Laura poked her head in to make sure everything was okay. He sobbed and quieted down in cycles but then started ramping up to real crying.  At one point he used the word "heartbroken" and my eyes started to sting with tears.Then, all of a sudden, in the middle of a jag about Voldemort,  he choked out, "He makes me want to cry!".  I almost sat bolt upright in bed. This was the first time he had ever said anything close to "When x happens, I feel y".  I kept lying with him, trying to see what else he had to show me.

He kept crying real tears and clearly feeling more sad than mad, so I started saying something to him that I used to say when he was a baby in the hospital. I used it especially when he was having painful procedures done or one of the multiple times he was septic and feeling godawful.  I kept softly repeating, "I hear you Simon.  I hear how upset you are.  I'm right here".  Everytime I'd say it he would cry harder.

At one point I said, "I hear how sad you are Simon. I wanted to let you know that I'm not sad, I'm feeling okay, so I can be here with you and listen while you're sad".  He stopped crying and I thought for a moment.  I said, "Simon, do you want me to be sad too?".  Quietly, he said, "Yes".  I asked, "Do you want me to cry too?"  He said yes.  I started to fake cry and he started sniffling and sounding like he might cry.  Then I started to real cry a little and he began to cry again.  After a few minutes of this, he settled down a bit and started talking, in a small, sad voice.

What he proceeded to do blew me away.

He went through a series of approximately 20 characters from movies, books, TV shows and his life. For each one, he said they were crying and then, with prompting, told me why.

It went like this:
Simon: Barbie is crying
Me: Why is Barbie crying?
Simon: Because her Dreamhouse is gone.
Me: Oh, that's so so sad. She must be so sad.

Here are just a few that I can remember:
Professor Callahan (Big Hero 6) is crying because his daughter is gone
The Boov (from the movie Home) are crying because their planet is gone
Rosetta (from the Disney Fairies) is crying because Tinkerbell is gone
MM (Laura's Mom) is crying because her daughter is gone.
The Storm Troopers are crying because their guns are gone (this one particularly got me)

It went on like this for about 20 minutes.  The thing that struck me most was that each person lost the thing that meant the very most to them. They weren't crying because they lost a comic book, or a toy. They lost their person or their planet or the most identifying thing about them. I just lay in stunned silence between each version.

A few times I asked him why he was crying or why he was sad.  He would get really quiet. At one point I said, "Do you know why you are sad or do you just have sad feelings?"  He quickly said, "Sad feelings".  He mostly didn't want me to touch him but at one point I put my hand on his chest. I asked him if he wanted me to leave it or take it off, he said to leave it.  I explained that sometimes when I feel sad it feels tight in my chest and sometimes tight in my throat too.  When I asked him if it felt like that for him, he said yes.

When it seemed like things were winding down, I asked why he was sad one more time. He thought for a minute and said, "My father is gone".  I had a moment of "Oh, God, are we having this conversation right now?" but decided to just roll with it and ask who his father was.  He answered "Darth Vader". I breathed a silent sigh of relief and silently chuckled.

More clues this morning when he and I were playing with 2 of his dolls.  He told me my doll wasn't feeling well and that his doll was the doctor.  I asked him what was wrong with my doll, and when he didn't answer, I decided to try to push a little. I said, "Oh, Doctor I'm so glad you're here.  My heart feels sick".  He turned his doll around immediately and said "Not available".  Trying to keep my face neutral, I said, "Oh, sorry, I mean my knee hurts".  His doll came over and did a little treatement and said, "There!  Now you're all better".  My doll thanked his doll and we went on our merry way.

I'm just so in awe of how sophisticated his brain is and heartbroken about how sad he is. What he described with all his examples is the most deep, existential grief.  His way of communicating what is happening inside reminds me so much of the autistic boy in "Life Animated" (an INCREDIBLE read/listen- highly recommend it if you want to understand Simon).

What has happened in the last 12 hours just reminds me that we can't come at any of this head on with Simon, but if we take one step back to give him some space and listen carefully, he is speaking volumes. 

Tuesday, May 19, 2015

Unanswered questions

When we go quiet on the blog, it’s usually for one of two reasons: 1) things are really good or 2) things are really hard.  Unfortunately, this time it’s reason #2.

Simon has been having a really, really hard time, which means we have been having a really, really hard time.  Laura thinks it’s been since January, but I didn’t really start noticing it until we came back from Disneyland in April.  We can both agree that the last few weeks have been particularly awful. 
Simon’s default setting these days seems to be rage and frustration.  He is hair trigger sensitive which looks like every day multiple things will set him off on a raging tantrum or just flat out stubborn refusal to do whatever is asked of him.  I know it sounds like a typical 7 year old, but magnify it by 10 and that’s more what we’re dealing with.  
He has gotten multiple “red cards” at school, which never happened once last semester.  He’ll be going along fine and then he just goes on strike (we’re sure there are triggers, but no one can figure out exactly what they are).  If you push him too hard or on the wrong day, he now starts hitting/kicking.  It’s to the point that his special ed teacher, who loves Simon, has even suggested that he might do better in a different class. That would mean moving to his *SIXTH* class in four years.  I'm terrified it means he'll just get warehoused with other kids that are too violent/troubled/low-functioning to hang in a special day class and that there won't be sufficient resources to really keep them moving forward.  I don't want him in a holding pen.  If he really needs to switch, we'll be diligent in our research and advocacy, but we are pretty much in a “hell no” place about moving classes right now.

This sudden uptick in intensity and the idea that he might  need to go to another class has sent me down a rabbit hole.  I keep running through all the possible options to answer the glaring question: WHAT THE FUCK IS GOING ON?   
Option 1: Someone is hurting him/molesting him (we can’t identify anytime/place where that would be possible) and that he can’t tell us because he doesn’t have the communication skills.  Worst. Possible. Option.

Option 2: Something is physically hurting him/his heart function is declining and he is uncomfortable and he can’t tell us. Almost as bad as option 1.  

Option 3: He’s just going through some normalish developmental stage that other kids go through at this age or he’s having typical end of the year burn out, but it’s just magnified by autism and is nothing to worry about.  Would be great, but doesn’t seem like that’s what’s up and also, HOW LONG WILL THIS LAST???
Option 4: Now that his heart function is stable and his eating is pretty solid, he finally has the opportunity to feel all the rage, frustration, pain and fight for control that he couldn’t feel when he was younger and all manner of awful shit was happening to him.  I like this option best.

We are pulling in all our resources including someone who is supposed to be awesome with kids on the spectrum (recommended to us by another therapist), getting a neuropsychological assessment to see if there is potentially some brain damage caused by low oxygen/ toxic meds/sepsis when he was a baby, and talking with our ABA team about starting a “sensory diet” for Simon to see if that helps.   

I have had to face some REALLY ugly feelings and fears about our kid being even further out on the margins.  I’ve often used the analogy of feeling like we started out on a train with other parents and when Simon got sick, it was like our car split off from the rest of the train.  Right now I feel like the tracks switched again and we’re getting sent even further out from everyone else. My biggest fear is that he’s about to get shuttled to a track that dead ends. 
He’s getting older and stronger and at some point soon his physical temper tantrums are going to get scary and dangerous.   I’m afraid of what might happen if this behavior continues into his teen years and he tantrums when police are around.  He looks like a typical kid at first but he can’t follow directions, answer a direct question or control himself when he is raging.  If those issues don’t get better by the time he gets to be a teen, I will be VERY worried.  White privilege will help him, but an angry violent man is still an angry violent man to the police.

I grew up in a place where people were really valued because of what they did and how smart they were and how well they performed.  I never realized how deeply I internalized those messages about “value” and “worth” until I had to confront the possibility that my son might never “produce” for our capitalist society.  I am so grateful for the opportunity to dig all that crap out and look at it AND…well,  I’m sure I could have found another way to get to it besides having my son struggle.   
I also grew up with an almost pathological obsession with independence.   Some of it was a coping strategy, but I was also praised for it as a child everywhere I turned.   Through Laura, I have learned to value inter-dependence but it’s still a struggle for me sometimes.  Every time we have to consider a new class for Simon that is a step further away from “typical”, I have a renewed panic about what our lives might be like with a dependent adult child.  What it means for him, what it means for us, what it means for his place in society.  If I can just focus on *him* as this amazing human being that I find fascinating and loveable and charming, I’m mostly okay, but if I zoom out too far, the landscape I imagine is really grim.   Future tripping is never useful but particularly not when my kid is only 7.  I realize spending time worrying about this is absurd and…it’s what comes up.

My Mom has a connection to the head of cardiology at another children's hospital and we're getting to pick his brain about what could possibly be going on.  We may do more genetic testing to see if there are any answers there, since a lot has changed since we first had basic genetic testing done 7 years ago.  Good times.

We have about a month left of school and a summer full of plans Simon is excited about including 3 different camps.  We’re going to try to focus on having fun, getting Simon some extra support and living in the moment, unless the moment involves a tantrum, in which case we’ll fantasize about a Club-Med vacation.

Monday, March 16, 2015


Someone recently asked me how Laura and I were doing and I couldn’t find the words to articulate exactly how hard things feel right now.  Yesterday, an analogy came to me.

It’s like we are a forest and for years we worried about loggers coming in and clearcutting, about big dramatic shifts in our landscape.  Now it’s like we have termites. The slow, steady, grinding gnawing of the residual fear and the current struggles with Simon’s many delays has left big pockets of weakened, broken places that we aren’t quite aware of, or can ignore, until too much pressure gets applied in just the wrong spot.
This last week we both found ourselves crumbling a bit. 
For starters we are feeling half-dead from sleep deprivation.  Simon has been averaging wake-ups at least 5 nights a week.  This means he comes into our room sometime between 1:30 and 4 a.m.  and one of two things will happen.   If I’m feeling like, “THAT’S IT! We have to break this pattern and get him back in his own room!” I will take him back into his room where he demands that I sleep with him in the twin bed.  This process often takes a full hour, which usually involves me contorting myself into some quasi-comfortable position next to him until he falls asleep. Then I haul myself over him to sleep in the equally uncomfortable twin trundle, praying I didn’t try too early and wake him up and have to start all over again. Laura can’t do this b/c the bed hurts her back so much that she ends up non-functional the next day.

If I’m feeling desperate, I leave him in my spot in our bed and go try to sleep in his uncomfortable twin bed alone.  I usually find myself unable to fall back asleep for 45+ minutes.  Laura is kept half-awake most of the night from Simon’s twitchy body pressed against hers.   If Simon doesn’t wake up, then one of the dogs does or one of us just spontaneously wakes up and can’t go back to sleep for hours.  It’s a recipe for…well…feeling like life is just kinda crappy.
We have tried melatonin and homeopathy and white noise and none of it makes any kind of considerable difference for Simon.  He used to be on an appetite stimulant that made him sleep better, but we discontinued that about 6 months ago b/c he doesn’t need it for eating anymore.  We are going to try to cut out the small amount of ice cream (never a chocolate or coffee flavor, but still sugar) he eats before bed that is a hold-over from the calorie-pounding days and see if that helps.  We will also talk to his ABA team, but we’re currently focused on a program to let us cut his nails (after ditching the haircutting program for a while b/c we had a major setback with our last haircut).

The hardest part with Simon right now is that he is 100% inconsistent. In any given moment, you don’t know who you’re going to be interacting with.  Sometimes it’s a cute, quirky, cheerful almost 7-year old who can put his shoes on by himself with only 3 prompts.   Sometimes it’s a totally irrational tantrum-throwing two year old who can’t tell you what set him off.  Sometimes it’s a kid with the communication ability of MAYBE a 15 month old.   You can cycle through all three in a single interaction.   I can already hear people, “but my 7 year old does this too!”  It’s not the same.  I promise.  Even our ABA therapist has days when she’s like , “Wow.  Just wow.”

Last night when I was trying to get him to sleep, he wanted me to hold the back of his head.  I asked him if he had a headache.  He said yes, but he says yes to almost any question you ask him so you can’t bank on his answer actually being true.  I then tried to ask him if anything else hurt, naming specific parts. I asked him what he was feeling.  I asked him if he felt sick.  I asked him if he felt lonely.  Nothing.  Not a single answer to any of my questions.  It’s like he didn’t hear me.
In frustration, I tapped him hard on his shoulder and said his name loudly, in an “I’m trying to get your attention” voice.  His response was his typical, cute, friendly, almost “Scooby” sounding “Huh?”  Like he really had no idea I was talking to him and just realized I was trying to interact.  I almost screamed in frustration.  Instead, I took a deep breath, gave up on trying to understand what the problem was and lay there praying we would have some hope of getting a few hours of sleep.  After over an hour of him awake, he finally fell asleep and then it took me another 20-30 mins.  He woke up again at 5:15, got into bed with me and we slept until my alarm went off at 6 am so I could go to the gym.  Thankfully I didn’t wake him up b/c that would have meant 30 minutes less sleep for Laura.  I’m exhausted just typing this.

More communication potholes: Last Thursday there was a miscommunication with our respite worker and she thought Simon still had his “privileges” suspended (ie, no TV or iPad) as he’d had them taken away the last time she was there.  He, of course, freaked his freak because he was pissed that his fun stuff was taken away for no reason.   Instead of being able to say anything related to that, when our ABA therapist showed up to be with him at Hebrew School, he was still so enraged that he refused to participate in anything and talked about wanting to blow up the school.  She, of course, was slightly alarmed and texted me towards the end of the class saying things were not going well and that I might want to come get him early.  Upon arrival, I tried to check in with him about what was wrong, why he was upset, etc, but got nothing.  Just more surly.  It took a series of texts with the respite worker to piece together what had happened.  Of course this also triggers fears about really bad stuff happening to him at the hands of other people and not being able to get any information about it.  *hurl*
These days it feels like NOTHING is fun or easy.  Nothing.  It’s probably the sleep deprivation talking, but it’s hard to shake that feeling.  Almost every ordinary thing we have to do with Simon is a grind.  He still can’t dress himself without a massive fight 95% of the time.  Changing activities can cause a melt-down or he can’t stick with an activity for more than 5 minutes.   Yesterday morning Laura took a super sweet photo of Simon and I in the kitchen as we were baking “together” to make muffins to go give out to strangers near our house as a Random Act of Kindness.  She posted in on Facebook and it got a bunch of likes.
All I could think was “Don’t believe this lie.  This was not a sweet, family bonding experience. This is one of those FB posts all the memes reference that trick you into thinking someone else’s life is better than yours while the reality is someone is crying inside” . I know.  “Bitter, party of one, your table is ready”.  But seriously.  Behind the scenes this is what was happening:  
I asked Simon if he wanted to make muffins (ala The Great British Baking Show) and when he said yes,  I was so excited I jumped up and prepped the ingredients.  When it was time to start, of course he didn’t want to. After we cajoled him, he came into the kitchen but just wanted to watch.  Fine.  I kept trying to invite him to do different parts and he finally started to help but got frustrated in about 2 seconds with stirring and then didn’t want to help at all, so then I was in the kitchen and Laura was having to watch Simon because he can’t be left unattended without having a temper tantrum/destroying his room/ending up in a hideous mood for 30 minutes. I just ended up feeling guilty that ONCE AGAIN Laura was “on duty”.  We actually had a great time giving the muffins out,  but nothing about the process leading up to it felt fun or easy. 
The other piece is that my Mom has been out of the country for the last 6 weeks so we haven’t had our regular weekly date nights and our respite workers have had to cancel about 50% of the time on the weekends, so it’s not a total surprise that I’m feeling surly myself.  My new project is to find something that brings me joy and DO IT.
The one good thing is that Simon’s eating is going well (he’s kinda got a little bit of a gut going these days!) and he is loving Kung Fu which he does 3 times a week.  It’s the one area where he can sort of focus and I’m so grateful to see a glimpse of capacity to stay mostly with a group of peers.  The majority of the time he is still a happy, giggling little boy who loves anything having to do with guns, battlefights and, at the moment, pirates.   Mommies are struggling to battle the termites but the kid seems to be doing pretty well, despite us.
Mr. Cool walking our new dog, Walter

Doggies make ear infections feel better!

Spiderman saving the Girl Scouts

Up, up and away!

Getting barfed out by a hippo

"I know! I know!"

The Fitch ladies relaxing in Palm Springs on a weekend away

Our resident chef

"Cmbing Queen Esther's hair"  for Purim

I'm thinking...