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

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...


 

Friday, February 20, 2015

New York New York!!

 Our New York Trip from January


We landed softly...


only to brave the harsh cold winter


Simon was enjoying some black ice while Jaime was not enjoying much at all.


Nothing like a little FroYo when it's 9 Degrees outside



Simon and MM brave the Decepticons 
that are known to hang out in NYC apartment buildings


Laura and MM visit the Ice Rink
 where they spent many an hour going in circles





Larry and Simon worked out some differences- Larry Lost.


MM loves her Fart Gun!


 The Manhattan Children's Museum was a blast



As was visiting family in CT and getting our Hockey on!!


Simon and his new idol Shri!


Getting some pointers


 Ready for his first slap shot!

 Love with the cousins!



Jaime still has a thing or two to learn about putting on her own Hockey gear


Vietnamese food with PopPop



Jaime and Laura spiff up for a wedding




Fancy Pants (or in this case beaded dresses)


The family that goofs off together....


Cousins!


Jaime and the Groom



And the Bride!


Visiting the Cloisters


Locked in the Cloisters


Finally getting to teach the boy true appreciation for New York Pizza.....Priceless



Now we're back to a nice routine and getting serious

One more from NYC. With Uncle B!  As in Barry.
Family is the Best!!