Defying Gravity

Today is the 8^th anniversary of Simon getting diagnosed with Cardiomyopathy and our life going totally off the rails. I guess not “off” the rails, but definitely on a WAY different rail than we could have ever imagined. 

Last night I had a visceral memory of being woken up by the sickly sweet smell of formula soaking Simon’s crib when the port on his feeding tube would pop open during an overnight feed and the entire contents of his stomach, plus what the pump was putting out, would end up all over the bed. In “Tubie” circles, it’s called “Feeding the Bed” and it’s the bane of every tube feeding family’s existence. 

I lay there remembering how Laura and I would work like a finely oiled machine in the dark, pen lights firmly gripped in our mouths while one of us put a towel on the bed so we could change the soaking baby out of all his clothes and wipe him down while the other person changed and wiped down the crib. We could do the whole thing in under 5 minutes in the dark and not even wake the baby. When we were done, I knew I needed to be quiet for a few minutes because Laura would need to lay in the dark calculating how much extra food she could try to push into Simon the next day so he could grow. 

My internal clock still jolts me alert every once in a while at 10 pm, thinking it’s time to give Simon his dose of Lasix.  Our kid hasn’t taken Lasix for at least four years. FOUR years and my body still remembers. 

Last Sunday, Simon still hadn’t come into our room by 7:45 a.m. (he’s usually up by 6 if he’s not sleeping in our bed). I lay in bed simultaneously grateful for the extra bit of sleep and half wondering if he died in his sleep. The second thought didn’t even register until, out of the quiet, Laura said, “is it terrible that I still wonder if he’s dead when he sleeps in?” We lay in bed curled around each other, willing ourselves enjoy our snuggle instead of getting up to assuage the relentless beast of worry. Ten minutes later, we heard Simon’s door open and we both breathed an audible sigh of relief and hauled ourselves out of bed to meet the day.  This stuff is just woven into the fabric of our lives.  This is what it still looks like 8 years later. 

Tonight, as we do every year on August 1st, we delivered baked treats and a card/sign that has a "before" (Simon in the PICU) and "after" picture (Simon now) to the PICU staff.  I got there before Laura and Simon and decided to sit outside on a bench in the sun.  I leaned back, closed my eyes and immediately felt tears spring to my eyes. I remembered so vividly sitting in that same spot, warm sun on my skin, trying to find a moment of joy eight years ago.  I still remember how good the sun felt when we were in the hospital.  How good food tasted.  How funny jokes were.  How bright colors were.  How much joy felt like joy and grief felt like grief.  How simple everything was.

As we walked through the hospital tonight, I felt the calm, heavy, warm feeling I felt so often in the hospital.  I didn't want to talk, I didn't want to move fast, I didn't want to do anything but just BE.  It's not unlike the sleepy, heavy feeling I get when an airplane takes off, before the cabin pressure adjusts. It's like a little extra...gravity.

On August 1, 2008, Simon received a very grave diagnosis. We found ourselves overwhelmed by the gravity of the situation. I didn't really understand the meeting of those words in a lived sense until that day.  It's not a bad feeling, this gravity.  It's like a heavy blanket that slows you down so that everything feels very...simple.  It overwhelms your senses until the busy fades into the background and all you can sense is the sun on your face or the sound of your son's breath or the ticking of a clock while you wait for news. There is a very strange way this felt liberating. There is a simple beauty in having to surrender.  A relief at having no choices to make. A peace in knowing you have one job and one job only- to SHOW UP.

But the thing about gravity is that if you let it build and build and build it will crush you. There comes a time when you have to fight to get up, to get back in your lane even if it feels too fast, to rejoin life.  There comes a time when you have to defy gravity. 

Defying gravity has been the hardest part of the last 8 years.  Sometimes trying to function like a "normal" person, at the speed required by our society, has felt like trying to get a jumbo jet off the ground with a hamster powered engine.  It's a lot of fucking work and sometimes you're not sure it's going to happen.  

These last few days I've been remembering the sweetness and simplicity of our days in the hospital and also the sheer terror and trauma.  There was a damn good reason we worked to hard to get out of there and stay out of there. Both/and. 

This track we’ve ended up on has been brutal.  I'm not going to lie. It’s left me feeling beaten and scarred and always waiting for the other shoe to drop. Sometimes it feels like the intensity of the first few years of Simon's illness drained almost every ounce of emotional reserve I had accumulated throughout my lifetime. I feel like I aged 20 years in the last 8. 

This track has also required me to connect to and depend on people in a way I never would have otherwise. It’s left me with a heart more wide open than I ever thought possible. I feel a comraderie and fierce love for other families with kids with big struggles that I never thought possible. Actually, for all of humanity that’s struggling. It’s the fierce love of an underdog for another underdog.

These anniversaries are always so mixed for me. It’s painful to remember how hard it has been and such a good reminder of how far we’ve come. Simon is happy and healthy and totally unlike any other person I have ever met in my whole life. Laura and I are still going strong despite getting whacked with an absurd number of curveballs. We are loved and we are loving.  Gravity is pushing and we are pushing back.  We are defying odds and defying gravity.

That’s good enough for me today.

Simon, summing it up (with his cousin Francesca in the background):

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.

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.

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.

Termites

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.”

Examples:

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...

 

Do You See What I See?

Most nights when I am putting Simon to bed, there comes this moment. We begin with him lying on his back and me to his right lying on my side. After the books have been read and the music has been turned down to *fall asleep to this* level, I will think he is asleep and get ready to leave.  He will turn over on to his side facing me and find some part of my face or head to stroke. Tonight it wasthe newly shaved back of my neck.  When this happens I think over and over again *ohhowIloveyou, loveyouloveyouloveyou*

There is nothing sweeter than this moment. It's so simple and elemental.  Everything from the day or tomorrow fades quickly and quietly away and there is nothing. Just my son touching my face or head letting me know in no uncertain terms that I am his.  I am almost sad that there is never anyone around to witness this. It would be hard anyway with how delightfully dark his room gets, but I still sometimes wish that I had someone to witness this and remind me of it later.  Sometimes.  Other times I know this is one of those memories that will last me a lifetime and come in handy when things are a little more complicated.

Like most of the time.  

We are just a few days away from surviving yet another Winter Break, or as I like to call it, no break at all with a healthy dose of chaos thrown in to an already very full and mostly unpredictable life.  We had 3 Chanukah parties in three days, a trip down to Santa Cruz for Therapeutic Horseback Riding camp, a lovely Christmas Eve party, quiet Christmas morning with a Dim Sum lunch, Mamaw sleep overs, PopPop visits from NYC, Aunts and Uncles and Cousins visiting from L.A., more sleepovers with cousins and PopPop, swimming, playing, toys strewn about and movies attended (Big Hero 6 3x!!)

It's busy and joyous and loud and frenetic. It's also full of lovely quiet books read, and walks down the street and hands held.

For those of us with kids with the Special going on, it's also sometimes really really hard.  For Simon and I it's a huge change in routine and support systems. School is on break, ABA therapists go home to celebrate with their own families, therapies are on hold and there are expectations and comparisons as prolific as the pine needles and dreidls that litter the living room floor.  The last two are mine, all mine.  I don't know about what goes on in the minds of visiting relatives or even strangers at holiday parties. 

What I do know is that it's delightful and heart wrenching to watch my 6 3/4 year old connect so beautifully to his newly turned 4 year old cousin (while imagining that the next time we see them, he will have developmentally surpassed my son). 

 It's the tension between hearing over and over again how amazing Simon is doing and watching him need to disappear from social gatherings because they are too crowded. It's exhausting hearing the same out of context call for distress ("you will be arrested" or with his hands buried in his head "I died") when he needs some help or is overwhelmed but at the same time being able to read to the aforementioned cousin while sitting on the couch.

And what do other people see? They see an engaging, charming, very handsome and sometimes very witty little guy that really loves to engage. He talks non-stop. He's mostly easy going and he really really loves attention.

*cue the very small violin right about now*

It's hard to have the child with special needs that talks a mile a minute but can't have more than a 2 count back and forth with you. It's hard to have your almost 7 year old play so beautifully with your 4 year old nephew and immediately see that it's not going to stay that way for long because your nephew is not going to be able to hang for much longer with the delays. It's really not fun getting to a party and needing to sequester yourself with your son 90% of the time because the typical way that the other kids are playing is out of the realm of possibility for your kid. It's both amusing and heartbreaking to see your child get into opening presents for the first time and obsess over the Nerf guns that he got but can't work them correctly because of fine motor skills and attention to instructions.  It's the pat on the back that I can give myself for being that mom that fosters the costume play long after Halloween has ended and but realizes and then forgets the toileting issues that come with Velcro down the length of one's back, delays in potty training, and Simon's inability to ask an individual for help.

It's all of these things and more when we maneuver our way through those two long weeks of vacation. What do other people see? I don't really think about it that much outside of winter break, but it does bring up hard feelings around invisibility and isolation. And I know the grass is always greener and if your child is non-verbal or has different mobility issues, I hear you.

We have a friend whose slightly older daughter has just begun asking the "why am I different?" questions. They are so brutal and wonder-full to work out. The fact that she is asking them at all speaks to an awareness that will both weigh heavy and serve her for the rest of her life.  I do not know that Simon will ever have that awareness.  He is so clearly sure of who he is and barely bothered by the moments when he bumps up against systems, peers, or places that don't easily accommodate.  He was hurt when those boys at Hebrew School didn't want to play the ways that he plays.  He cried hard. He couldn't tell us why but he had the feelings. He was bereft when the Walking with Dinosaurs Live show was over. He couldn't understand why he couldn't watch it again and again and again.  And with both situations, he moved through it with a resilience that I would give my left blinker for.  

Still, there is something that's missing in his ability to connect; in his ability to integrate material, people, places, and events that keep him somehow disengaged or at least it seems that way.  And then all of a sudden he reaches out and draws you in.  He does it when you least expect it and sometimes when no one else is there to witness it.

 I think he takes great delight in his life. I see him as a happy child, one that is grounded and loved by a vast community of people. I see him for his complicated and ever changing self. I see him as unique. I see him as challenged and struggling in a world that is too often looking for the easy/fast way to keep turning round. I see him confused and frustrated and just beginning to wade into some kind of pool of curiosity about the world around him.  I see him.

So when he reaches out to touch my cheek or neck just before he sleeps, I don't mind the darkness or lack of witness. I actually love this vacuum that I get to breathe into. It's such an important 'other' time. For both of us.

Spidey Rides the Mountain Lion

Hang On Tight Mommy!

Just another night of ABA at our house

Friends

Simon Loves him some Sommers!

Protesting and Learning

Reading to cousin Charlie

PopPop in the House!!

Getting Ready for Dim Sum Christmas!

Simon's first real dog love Walter!

Mommy Love

How we bring in the Light!

PopPop and the Grandchildren

Look at that Face!

Family Photo

YouTube is mesmerizing

Taking a break post Little Farm

PopPop is super comfortable!

and a great reader!

Warriors!

Yoga at our house

Cousin love affair

Happy New Year to you all!

Mind The Gap

I cannot begin to tell you why this image that comes to mind, but what happened last night felt like getting slapped across the face with a big, smelly, slimy fish.  Not violent but unpleasant and jarring.

After Hebrew school, Simon and 2 other 6-year old boys he’s been in class with for a few years like to run around the sanctuary.  I played with them for a while and then left them on their own while I chatted with other parents just outside the doorway.  About 20 minutes later, I looked in and realized it was quiet and I didn’t see any of the boys. 

I called out for Simon. Just then the Mom of one of the boys headed towards me up the aisle saying, “He’s in there.  Something happened. Let me go find my kid and then I’ll tell you what’s up”.  As I walked in, I heard a pitiful wail.  When I got to Simon, he was sitting on a bench, totally curled over his knees, head in hands, crying. 

I sat next to him and put my arm around him.  He slumped against me and continued crying.  After a few unsuccessful attempts to get him to tell me what happened, he said suddenly wailed, “I died! They killed me!”

He has been running a few verbal “tapes” for the last few months when he’s upset- that he died, that he is going to kill you, that you are going to go to jail, that you or he is going to the Dark Side (Star Wars reference).   We’ve tried talking to him about it (especially the died/killing ones) and it’s clear he does NOT get what it really means and why it lands so hard on other people when he says it.  We have been instructed by our ABA therapist to do “extinction” with it, which means to just to ignore the behavior until it goes extinct or dies.  I know, ironic. 

Last week when we were driving through downtown Oakland to assess the aftermath of the Ferguson-related protests, Laura started to explain what we were looking at and why.   He seemed to sort of get it and sort of not.  After we explained the basics, he asked a few questions (Questions!?!?!- Monumental progress developmentally).

Him: The police officer shot someone?
Us: Yes.
Him: Did he die?
Us: Yes.
Him: Did the police officer go to jail?
Us: No.  That’s why people are so upset.  People don’t think it’s fair that he didn’t go to jail for shooting someone that didn’t have a gun.  

Then he said some sort of “popcorn” speech that let us know we had reached the limit of his ability to engage on this.

Since that conversation about Ferguson, we’ve both noticed that his "I died/you will be dead/you will go to jail” tape has increased.  It’s been a little disturbing and makes me worry that we did the wrong thing by trying to explain such a painful and complicated issue when it may be beyond his ability to process.  But he is a sponge and I know he has been hearing us talk about it ad nauseaum at home, so all the information is already in there.  I think our job as parents is to help him make sense of what is going on in the world around him, however we can, even if we miss the mark once in a while.

It’s clear that while he gets the intent behind those words (mean/bad things), he does not get the level of intensity.  Still, when he said, “I died.  They killed me”, I felt a punch to the gut and my eyes started to sting.  I had lightening quick flash of thoughts that included maternal anguish at the idea of that ever happening to him quickly followed by my social justice brain stating that white privilege would make that highly unlikely.  It kinda left me with whiplash.  And I still had a sobbing child on my arm and no idea what in the actual hell had happened.

The other two boys and their mothers came in and stood in front of us.  One Mom asked the group of boys what happened.  One of the other boys started to tell his version.  The other Mom said, “I think Simon should tell us what happened since he looks really upset”. 

Laura and I shot each other a look.  We both knew that there was absolutely ZERO chance Simon would be able to give a coherent or accurate accounting of much that would be useful, given his speech challenges.  Still, I decided to go along with the charade and asked Simon if he could tell me what happened.  “I killed them!” he exclaimed.  I couldn’t even look at the mothers. I didn’t want to see the shocked expressions on their faces.  “I sent them to the Dark Side”, he continued.

Laura said that she would like to hear from the other boys about what they thought happened.  One of them, the more rambunctious of the two, started animatedly telling a story of all the things Simon said to them (none of which were phrases or words Simon uses).  Then, he explained, Simon’s shoes came off and that’s when he got upset.  An adult asked how the shoes came off.  “Oh, it was an accident”, he said and spun a tall tale about a jacket mysteriously getting tangled up in the shoes.  Then the quieter boy said, “He said he was going to shoot us and that we were going to die and go to jail and go to the Dark Side.  We didn’t want to”.

Laura and I started vigorously nodding.  Now we were getting somewhere. Yes, we said, that sounds like something Simon would say.  We did a quick reminder with Simon about not saying those kinds of things to people because it hurts their feelings.  Head still buried in my chest. What happened BEFORE he said those things, we wanted to know.  No one could really tell us. 

I had an idea.  “Simon, did you want to play Star Wars with the boys?” I asked him.  His tearstained face popped up, smiling. “Yes! Let’s play Star Wars!” he happily chirped. “We don’t want to”, the boys replied.  Simon’s head dropped back onto my arm and he started sniffling again.  “I want an apology”, one of the boy proclaimed.  I asked Simon if he could apologize.  “NEVER! They will be dead! They will go to the Dark Side” he replied. 

*sigh*

These boys have been in class with Simon long enough to know he’s quirky and doesn’t usually like to go with the program, but this incident revealed exactly how big and where the gap is between him and his peers. I felt like some flap of skin had been peeled back and they were staring at our tender spots, pulsing and shiny and vulnerable.   It felt…humiliating and a little scary and sad.   We’re both really questioning if it’s okay to leave him on his own with other kids because he can’t read social cues and can never articulate his side of the story if something goes wrong as a result of a mis-read.  This is so not the free-range parenting I had anticipated.

As the 2 boys scampered off to play,  Mom of the rambunctious boy started to apologize and then started to tear up.  I moved in to give her a hug and she fell on me, wracked with sobs.   “I feel so bad about the lie” she moaned.

I wanted to draw back and shake her and say, “It is the most amazing thing in the world that your son just lied!  It’s probably the most age appropriate, typical thing you could ever ask a 6 year old to do! Do you know how fucking lucky you are?”

I also really felt her pain as a mother whose kid had just done something kind of shitty.  I murmured that what he did was totally age appropriate (true),  that she was doing a great job (true) and that I was that kid that took other people’s shoes (totally true- I was an angry, kinda mean kid) and wasn’t parenting just fucking brutal sometimes (a-to-the-freaking-men)?  She wiped her face, flashed a sad smile and nodded.

Last night was a reminder that, despite all our progress, there are still pockets of gaping, swirling, unbridgeable (for now) chasms between our boy and his peers.  Last night was the first time that one of those gaps has caused an incident.   I have a feeling it won’t be the last.