Suspicions (probably) Confirmed

Yesterday eleven of us spent three and a half hours crammed into a tiny room, discussing all the things that are "off" about Simon.  In other words, we just had Simon's Individualized Education Plan (IEP) meeting.

There was a way it was great.  The room was filled with his teacher, the occupational therapist, the speech therapist, psychologist, nurse, administration rep, the principal (for a hot second), the director of his afternoon program, me, Laura and my Mom. There was something really comforting about being in a room full of people that see Simon's quirks up close and personal on a daily basis.  They aren't well meaning strangers invested in him being "normal".  They don't have an inclination to say "oh, he looks fine to me" or "he's just being 4" when he's clearly doing something that is "off".  They really see, and in fact are being paid to see, in minute detail all the odd and concerning things Laura and I see every day.

And...it was kind of brutal. They had lots of nice things to say about him, of course.  But a lot less than last time, because so many of the things they found charming about him at our last IEP two and a half years ago are less cute and more worrisome as we look down the barrel of Simon's 5th birthday next month.

I entered that meeting a bit anxious. We were coming specifically to hear just HOW behind/off track Simon is compared to kids his age.  I haven't really been able to get a good handle on it over the last 6 months.  His peers are doing all sorts of things he's not and he's doing all sorts of things they're not and I haven't been able to tell how far away they are from each other. We were going to get a very objective picture of that, like it or not.

I was prepared to hear some hard news about just how behind he was but I was not prepared for just how hard it would be.  Nor was I prepared for a potentially new diagnosis.

The psychologist presented her information first and in retrospect, I'm grateful that they just got it out of the way.  I scanned through her report quickly before she started talking and felt a little jolt when I realized that she had decided to assess him for autism.  As per our last post, we started the process through our pediatrician to assess him medically, but it will be weeks before that process is finished.

"Maybe we'll get some answers today", I though hopefully. This thought was immediately followed with a dread-filled, "Oh, shit.  Maybe we'll get answers today".

She walked us through her report and I kept trying not to skip ahead. She kept talking about cognitive function and hyperactivity and activities of daily living.  She kept talking about percentiles and pointing at a bell curve to show where Simon is functioning compared to his peers. I realize mid-way through her presentation that my point of reference has only ever been the right side of those kinds of charts.  This lady just kept pointing at the left side.What I ended up hearing was "Wah, wah, low average this.  Wah, wah, borderline that."

Really, what I heard was "Your son is a retard".

I know you're not supposed to say that word, but that's what my brain kicked out in terror.  I started flashing through memories of how my peers (and probably me) treated or talked about or thought about the kids in special ed.  The kids with physical issues and cognitive issues and autism. How nervous they made us. How "other" they seemed.  Shit. That's my kid.

I started feeling sad.  And scared.  And a little pissed. Our kid is about to jump in to a big ass pond.  We were supposed to be all caught up by the time we had this IEP, not be pointing at this side of a graph.   This is really NOT how preparing to enter our kid into Kindergarden was supposed to go.  Not at all.

I listened patiently and then we got to the part about autism.  Laura was sitting across a table from me and I so desperately wished we were sitting next to each other so we could hold hands under the table as she went through that section.  I held my breath and tried to follow what she was saying.

Then just as she said it, I read it.

 "Simon meets the criteria for Autistic-like behavior".

Whomp.  There it is.

There were three sections of the autism assessment and he scored in the autism range for 2 and just on the spectrum for the third. What this lady is telling me is that my kid is not merely dipping a toe into this pool, he's treading water in the fucking middle of it.

Laura and I both nodded silently.  We assured them that we weren't surprised, that this all makes sense. But I was still reeling.  I desperately tried to catch Laura's gaze, but she was furiously scanning the reports in front of us and she was too far away for me to tap.  I just tried to let it sink in.

The next therapist started to give her report and as the rest followed, I noticed that they began peppering their reports with "autism" and "autistic".   It felt a little like they'd been waiting for this preliminary diagnosis because they all knew what was going on. They finally had a word to use to capture so much of what we have all been seeing.

It was simultaneously painful and a relief to have easier words to capture the quirks of Simon.  His teacher said at one point, "There are square pegs in round holes and then there's Simon.  He's like a shiny, multi-dimensional octagon!"  Truer words were never spoken.  Again and again, these folks talked about, essentially, what a mystery he is.  Some days he comes in and kicks ass and is totally on task- he picks up his scissors and cuts around a curve.  Other days he comes in and picks up the scissors and can't figure out how they work.  You never know which Simon you're going to get.  It was so comforting in some weird way, to hear other people echo our experience.

When we finally left the meeting, I felt like I'd just been in a boxing ring for 4 hours. We got home and I just felt numb.  Then...I started to have feelings.Simon came home and said something typically, quirkily Simon. I don't even remember what it was but I caught myself looking at him differently, as if from a distance.  I literally thought to myself, "That's the autism talking, not Simon". Right now, it feels like autism is a hostile parasite that has taken over his body and brain. It's some foreign body that can be excised.  But it can't.  It's just a label for a huge constellation of funny things that make our kid different from most other kids his age.

I told a few people about the new diagnosis yesterday afternoon and evening and found myself growing steadily more FURIOUS. I realize that there was a preview of this topic in our last post, but no one said, "oh my gosh!  really?  What a shock!"  Most people just quietly said, "wow, that's hard".  But no surprise.

I am finding myself feeling sort of humiliated. It's like everyone else knew something I didn't.  I've had my own concerns and questions for over a year now, but ... I know this is totally inconsistent with my constant ranting about people who say, "oh, he's just fine" or "he seems pretty normal to me". Welcome to the land of feelings.

Last night as Laura and I lay in bed I finally started to cry. I am not one to cry much.  I find it annoying and awkward. But I need to grieve.  I feel like I did as the three week mark of being in the hospital approached when Simon first got sick.  The cardiologist had said at our first meeting, "about a third of kids bounce back right away.  We'll know in about three weeks if he's one of those kids".  As the three week mark came and went and Simon was no better, we felt that window closing.  It left us with two grim options- Simon would eventually get out of the hospital but probably have issues for the rest of his life or he would continue to get worse and die or need a transplant.  Those were our two choices left after three weeks.

I didn't realize until we had the IEP how much I was still holding onto the fantasy that Simon was actually catching up and would someday be typical. I have been holding onto a fantasy that someday we will have a "normal" life. That someday the heart issues and the feeding issues and the slow development will all just be fodder for stories about "that crazy time in our lives".

Yesterday I heard that that day will probably never come.  It's like whack-a-mole.  We got his heart stable but he's still on a feeding tube.  We might get him off the feeding tube but now we have a diagnosis of autism. His developmental stuff probably isn't going to get better magically.  It feels like the shades are being drawn across the window to that far-off carefree life I've been eyeing.

I feel a lot like I did when I first started working on my racism.  I was horrified to find out how many awful stereotypes  had been installed in my brain, against my consent, from living in a racist society.  I hadn't even known they were there until I started unpacking all of it.  I never knew until yesterday how many feelings I have about autism and adults with special needs.  It's...hideous.  I have a lot of work to do so that I can be the best parent I can to Simon.

*sigh*

As Laura would say, AFGO! which stands for Another Fucking Growth Opportunity.

Laura is doing a much better job holding out hope that he and we may still have an easier life someday. It's the same way she held out hope the weekend  we decided not to pursue a transplant for Simon.  In my super-pragmatic way, I thought the email we needed to send out that weekend should say, "Well, we're not doing a transplant and they said there's not much more we can do so it's time to say goodbye.  That's the path we're on and goddamn it, let's just get it done".  Laura talked that night about there still being a flicker of hope.  Mine was extinguished.  I was sure he was going to die and I just wanted to get it over with.  I wanted him to pass quickly if he was going to pass and grieve and get out of the hellish limbo we were in.  Patient Taurus that she is, Laura settled in for some more waiting, was not ready to charge down that path. I am forever grateful that she didn't let me write the post I wanted to send out that night. Instead we wrote this post that is infinitely more hopeful than anything I would have written on my own.

I find myself once again leaning on Laura's hope and patience as we navigate this news.  We are finding ourselves drawn to each other as we were when Simon was critically ill.  We are moving closer to each other in any room we are in, touching each other in passing, standing for long hugs, just because. She is my touchstone.  We often say to each other when things are rocky, "There is no one else I'd want to be in this shitstorm with!"  And it's true.  I really am not sure I could keep my bearings with out my steady, salt-of-the-earth wife.  Despite all this mishegas, I consider myself one lucky woman.

Once I move through grief, I think my biggest challenge will be to see this word as a handle we can use to leverage resources to our advantage, not a big heavy stick that is trying to bash the living daylights out of my hopes and dreams for my son.  As the perpetual optimist, I'm sure I'll get there, but I'm sure not there yet.

Right now I'm just heartbroken.

"Isn't there another way? He's just a booooy!"

It's a scene from one of Simon's favorite movies "Finding Nemo". Nemo is newly relocated to the dentist's fish tank. It's the first night and Gill and the gang are about to initiate him into the bonds of tankhood. He has to swim through the ring of fire and hasn't yet discovered it's just bubbles. The drums are building, Mount Wannahackaloogie is looking ominous and Peaches, the starfish, cries out "Isn't there another way? He's just a boy!"

I feel like Peaches. I know that it's just some bubbles and it's not really as scary as it looks but all I want right now is for Simon to just be a little boy.

I'm ahead of myself. Let me back up.

On Tuesday I was sitting among my fellow chaplaincy students trying to figure out lunch plans. We had just broken in the middle of a long day and even before I could put my $.02 in about where we should eat, my phone rang.  It was Dr W's office (Simon's pediatrician) and I had to answer, given all of the red tape we are going through to get Simon authorized for a special feeding therapy program (more about the denial, appeal, new authorization, major fight later). Dr. W does have some news on the feeding front but at the end of the conversation throws out "Have you ever thought about getting Simon assessed for some of his behavioral issues? I think maybe we should look at that and think about getting him assessed to see if he falls on the autism spectrum."

It's kind of out of nowhere and kind of been sitting there with the shortstop ever since Simon turned three and had his final assessments done with the Regional Center. At the time, they assessed him for Autism just to see if he might qualify for additional services.  He did not. It's not that we were relieved, we weren't phased really. A little bummed about not getting free diapers or other services through the regional center, but at that point, Autism didn't seem to be a possibility. We were just beginning to see parallel play with his peers, eye contact  with him had been a religious experience since birth, and his language was just starting to explode.

That's not to say it hasn't come up since then.  It's been batted around by different folk at different times with mostly a "I don't think that's a concern, look at how he..." and to be honest, was not something that Jaime or I thought we needed to pursue given our ease and abundance with services received through the district. Simon has had two wonderful special day classes since he turned three. In my opinion, both have been just perfect for him. He's had Speech therapy and occupational therapy through them, both at what we think is just the right frequency and he's had physical therapy and Hippotherapy (horse) through our private insurance. He has grown and changed so much in the last two years.

And

There are quirks. There are delays. There are signs.

There are signs that we don't have all the answers and it's not just a series of delays that are separate and  distinct from each other. There is more than just a fine motor, pragmatic and expressive language issue. There are social issues, echolalia (repeating over and over a phrase that he's heard before), and his limited interest in varied activities. So maybe there is something there. I don't know. We're going to pursue testing. It's been five days since my conversation with Dr W and I'm feeling calmer about it.

At the time though, the only thing I could think of was "I just want him to get to be a little boy. He's just a little boy." I was Peaches and there was the ominous cloud covered, about to explode, mount Wannahackaloogie. It was about to erupt with yet another label to be burned indefinitely on to my boy. Cardiomyopathy, tube-fed, special needs, developmentally delayed. He's fucking 4!

Yes, he loves dinosaurs, racetracks, dragons and Jewish holidays and blessings. But when we talk about Simon we talk about all those things plus the aforementioned. Those pieces of his identity follow him where ever he goes. Some of them will follow him for the rest of his life.

How many of us have things from when we were 4 that we can say are still part of our identity? Sure, there are the things that we can say people saw budding in us as four year olds but I think that our sense of self, and the way in which the worlds sees us, really doesn't form until adolescence. I know there may be some holes my developmental thinking. Still, for those of us that have had major pieces of our identity show up that early, it's not always a pleasurable thing. Especially if it's a piece of identity that is not popular or easily integrated into the larger institutions that make up our culture or society. People of color, poor people, people with significant physical differences, medical issues and developmental differences have an additional daily practice of working harder to make it work. It may not be true every moment but it is true. It's the way our schools, government, military, media,economic and medical institutions are set up.

It's political and shit. It speaks to a larger history of oppression, exclusion, and fear of 'other'. It's something I've felt passionate about ever since I was 9 years old and felt the flint spark a fire about justice.
AND

I'm his FUCKING MOTHER AND I WANT HIM TO JUST GET TO BE A LITTLE BOY!!!!

I'm tired of thinking about therapies and services and developmental milestones. This is in addition to life saving medications and heart functions and insurance authorizations. 'Tired' isn't the right word. These last few days I've been closer to furious and it's not just because his IEP meeting is tomorrow and we'll find out the results of all of his assessments (not for Autism but for Kindergarten) and what extra services he may or may not qualify for. Of course it is.  But to be honest, that's just one marker of how my son doesn't just get to be a little boy. He is a patient. He is a score on a measure. He is a series of markers that may or may not qualify him for an additional lifelong diagnosis. He is a heart function percentage. He is a case to be reviewed. He is a weight and height ratio that determines his caloric intake and medication dosage.

In those quiet moments when I can sit outside myself and my life...I see all of it that make up the whole of who he is. The labels, the quirks, the sweet parts, the frustrating four soon-to-be five parts...and I know him to be a whole, perfect little boy. One perfect little boy that is walking his path in just the right way.

...and when I'm not that evolved and get a call like I did last Tuesday, I grieve.
I grieve for the little boy that has so much to carry with him. I grieve for the Moms that don't ever get to have the carefree parenting experience that only involved stressing about the million and one things you thought you knew about parenting. I grieve for the boy that will (hopefully) grow into a man that will have to manage his own medications and regular doctor visits when his friends are worrying about saving up enough for their own car.

Peaches asked if there was another way. There isn't. It's not that this way contains only grief. Simon is a loved, lovable, loving little man. He's hysterical and frustrating and generous and a kooky little boy. He is gorgeous and messy and smart as fuck. He's Jewish and has two moms and mess of grandparents and aunties and uncles. He's short. He has blue eyes and a birthmark on the bottom of one of his feet (and I am not a terrible mom that i can't tell you which one). He has a heart condition.

Some of those things might change. Some of them won't. He has so much more to be. As his mom I just want the world to be ready and celebratory for the so much more that he has to become.

Ready...?

Poof! It is now so.

Shark Bait Hooo Ha Ha!!

Yeah I'm still working on eating, what of it?!

 Simon with his buddy Nathan. The swoon factor is off the charts.

Overall series

Simon and his G'paw at Fairyland in Oakland

Simon is rockin' his little boydom'. Mommy is still workin' it out.