50/50

Last weekend I was invited to a gathering that included a few other families with kids with special needs, most of whom I had not met before. I was chatting with a Dad who has two kids on the spectrum.  As we talked about our kids,  I mentioned that in addition to being on the spectrum,  Simon had also been very ill with heart disease as a small child. His compassionate “oh man, that sounds so hard” response to that extra bit of news was welcome and also jarring.  It always catches me off guard when another parent with a kid with special needs is shocked by our medical experiences. I forget sometimes that there are multiple clubs under the “Special Needs” umbrella.  I figure that we belong to *three* clubs.

I’m a public health nerd, so I made a Venn diagram with examples of what I mean.
(Simon doesn't have all the things listed under each category, btw, in case that's confusing- just giving examples of what might be in each bucket) 

As I lay in bed thinking about my conversation with that Dad, I realized that Simon's life so far is divided almost equally in half, with the  first half dominated by medical special needs and the second half by developmental special needs.  As a bonus, in the last year we've also been joined by behavioral special needs but I sort of lump that in with the developmental stuff. 

Our lives have been somewhat ruled by whatever issue is on the front burner.  In the first 5 years of Simon's life, we only wanted to go to cardiac camps, freaked out about germs on the daily and mostly lived with the threat of death.  At about age 5, Simon got off the feeding tube, his heart stabilized and we got the autism diagnosis.  From that point on, heart camps didn't work for us anymore, we shifted our focus from keeping him alive to how to best understand how his brain works, worry now about crowded/overstimulating situations and live with the threat of him getting bullied.  Last year he got diagnosed with ADHD and we've added paying attention to how ADHD meds are/are not working for him, how to help him manage his big feelings that sweep through with lightening speed and worry about the executive function challenges of middle school that are coming up in 6th grade. 

While it's stressful to raise a kid with special needs, I've found the kinds of stress to be really different depending on the category of the challenge.  Here's my breakdown:

• The stress of medical special needs kind of feels like getting clubbed to death. 
• The stress from managing developmental special needs might be best likened to death by a thousand paper cuts. 
• Behavioral special needs can feel like there is imminent risk of bodily harm (to yourself or your kid, depending on the day and the tantrum). 

The joys are different too.  We don't celebrate echocardiogram results and dropping meds from the regimen anymore.  Instead, we high five when Simon asks a "why" question and cheer when he gets his dirty dishes from the living room to the kitchen without a distracted bypass to his bedroom with dishes still in hand. One isn't better or worse than the others, just different. Actually, that's bullshit. I'll take the behavioral stress over the medical stress.  The threat of death sucks the big one. 

It's all a lot and with Simon, much of it isn't obvious at first, which also feels hard.  Sometimes it feels like we're carrying this enormous load and you can't tell if you just meet us. Laura and I often talk about how we wish there were some secret signal for other parents of kids with special needs to “flag” that we’re a member of the same club. This has been proposed a few times, but it looks way too much like “Heil Hitler” for me to promote.  Still, how amazing would that be?!

I love getting to be around other parents of kids with special needs, whatever stripe.  And, there's something unique about people who are wrangling more than one. About 7 years ago, a few of us that were in an early intervention program together formed the BAD Mamas (Bitchin' And Drinkin' Mamas). Every couple of months we soak in a hot tub, eat cheese, drink wine (well, the other ones do) and bitch about all our woes.  And because we all have kids that have medical AND developmental and/or behavioral stuff, we effortlessly swing between work challenges, medical tests, new diagnoses, IEPs and who our favorite caseworker is this month and everyone just nods.  There's no explaining, no worrying about stressing someone out, no need to be careful.  We just let it all hang out. 

I'm so grateful to get to belong to so many people. Queers.  Oaklanders. Public Health workers. Parents of kids with heart disease.  Parents of kids on the spectrum.  Parents of kids with squirrel brain (as I call ADHD). Jews. Partners of Chaplains. The list goes on. 

And on extra hard days, I'm extra grateful for my BAD Mamas and all the other parents out there whose lives double and triple up on those bubbles.   It's not something I would choose, but I think those of us who live these wacky realities belong to each other in a way that can only be forged by being squeezed between a rock and a hard place.  Silver linings.  They're everywhere. 

School photo aka Brute Squad application pic

Hawking gelt at Trader Joe's

Sacked out in the airport during a delay

Vikings in Canada!

Headed to the Oakland Women's March with Mamaw

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. 

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...

 

Toothless!

Sorry we're such slackers over here.   Had an amazing trip to NYC for a week (will try to get pics up soon) and then fell right back into crazy, typical life.  Been meaning to post for weeks, but...

We do have one noteworthy thing to post about. We hit a huge landmark on January 29th.  Simon lost his first tooth!  I was inordinately excited about Simon's wiggly tooth and couldn't figure out exactly why I was so invested, until Laura astutely remarked that this is one of the only developmental markers that doesn't involve some kind of skill.

The tooth-losing process doesn't really have benchmarks and standards, assessments or evaluations.  There's no real way to lose your teeth "wrong" or "off" or "slow" in the way you can with so many other developmental stages.  It's just pure, unadulterated growth.

Not the best pic, but you get the idea.  The tooth just next to his new gap is also wiggly, so we might have a bonafide snaggletooth soon!

 

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!