Tuesday, March 12, 2013

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.


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.


Nate's Mom @ Nate is Great said...

Mama, I just want to reach right through this computer and hug you. And, if I could, I would tell you that Everything Will Be Okay. Better than Okay. Everything will be AWESOME. Those dreams you had of Simon catching up and being to the right of the chart -- those are your dreams. They were never Simon's. Simon's dreams are to be an awesome kid. And you need to get past your wishes pretty quick in order to help your son be the best kid he possibly can be. Autism is Simon and Simon is autism. There is no division. Without it, he wouldn't be who he is. And he is an amazing kid who's going to do some amazing things in his lifetime.

Three pieces of unsolicited advice. First, though you have an amazing team around you, go download the 100 Day Kit from Autism Speaks (http://www.autismspeaks.org/family-services/tool-kits/100-day-kit - You can either download it or have it sent to Kinkos/Fed Ex where they will print and bind you a copy.) The diagnosis is overwhelming and they wrote this map to tell you what to do during the first 100 days after receiving the diagnosis. Second, go checkout the Autcast on Facebook. It is a group led by an autistic man (who is also gay - so he's a double whammy of a minority) who aims to let all of us see what autism is. Lately, he's been posting pictures of What Autism Is and it's amazing. So many beautiful pictures of kids and adults. But what is most humbling -- and will help you -- is seeing how many adults (ADULTS) weren't diagnosed with autism until they were in their 30s or 40s. They lived their whole life being told they were normal -- all the while knowing they weren't. The diagnosis is almost always described as a relief and brings self-awareness and understanding. Simon? He knows at 4. And that's going to put him so much further ahead of the curve. Third, while you have an amazing pediatrician (I'm sure) you might also look into a Developmental Pediatrician, those who specialize in autism. They're pretty great.

There are many -- MANY -- that came before Nate and Simon -- and there are many to come. There is no epidemic, this isn't from shots, this is real. It's always been there. Those before our boys were institutionalized -- for life, as recent as the last generation. Our boys get early intervention services that change their lives for the good, help them become productive members of society, and be active members of their families. And guess what?! Now Simon gets a handicapped placard (ours just arrived and life is So. Much. Easier!) and can get the special pass at Disney World to cut the line ALL THE TIME.

Team Nate loves Team Simon madly. Chin up, buttercup, and hug that kid for us.

Unknown said...

Thanks for sharing Jamie- just want to you to know I'm here, I read this, I see what you are going through and feel very honored to be a witness. I love your description of your relationship with Laura- it inspires me to slow down and be more loving and connected in my own family-

Terra said...

Simon is still the same kid he was last week, before the diagnosis. The only thing that's changed was the diagnosis, and it IS still preliminary.

The rest of this is from a teaching angle. Simon isn't doomed. I understand that currently he's on the left end of the bell curve, but that doesn't mean he'll always be there - or that it's a bad thing to be there. These things change. Kids are amazingly plastic and tend to live up (or down) to expectations, so given how much you two love him and are invested in him and his future, he will most undoubtedly be fine.

I teach autistic kids - at my school, special ed kids get special day classes EXCEPT for science and social studies, so I get them all. (I am not a special education teacher.) Teachers these days are much nicer to sped kids than they were when you and I were growing up. So are kids. The moderate/severe kids play right outside my window and no one harasses them or makes fun of them. No one bothers the borderline, mild, or autistic kids I teach - in fact, they tend to have a lot of friends - including the autistic kids. And my school isn't special by any means. It's pretty ordinary.

Simon will continue to be loved and be awesome and have friends for the rest of his life. He seems to have a special quality that inspires devotion in others. It's entirely possible that his future includes being named Mr. Popularity, not being harassed or made fun of at school.

Abby said...

Thank you for sharing this. I am awed by your family. Your strength and love is inspiring.

Holding your family in the light.

Meredith Self said...

I loved reading every word of your post. The only thing that's sticking with me is :

"shiny, multi-dimensional octagon!"

What beautiful words. What beautiful, beautiful words. They penetrated my heart. They radiate something truer about humanity than any diagnosis or any "normal" ever could capture. We are all really our own shape.

Sending love and holding space for your love of each other!

Willoughby said...

Your love is inspiring. Good thoughts and more love from Brooklyn.

Katie said...

well, fuck.

i want to leave something inspiring like the people above but i'm kind of in the furious phase at the moment. i just want life to get easier for you guys. for like *one* second. ultimately, i think this diagnosis WILL end up making things easier, but first you have to grieve the future you thought was coming. fuck.

silver linings:
--simon could not be luckier in the parents the universe chose for him.
--all children with spectrum disorders could not be luckier to have the two of you fighting this fight, learning, teaching, improving over time the way these unique kids experience the world.
--it's a big handle. you know this because you are black and blue from its thwackings at present. but there are a lot of services it can leverage, as you said, and i have personally seen these services make a difference in kids and their families. big differences.
--it's nice to have a name. sometimes it's nice to know there are other shiny octagons out there who are going through similar things.

i love you.



Katie said...

well, fuck.

i want to leave something inspiring like the people above but i'm kind of in the furious phase at the moment. i just want life to get easier for you guys. for like *one* second. ultimately, i think this diagnosis WILL end up making things easier, but first you have to grieve the future you thought was coming. fuck.

silver linings:
--simon could not be luckier in the parents the universe chose for him.
--all children with spectrum disorders could not be luckier to have the two of you fighting this fight, learning, teaching, improving over time the way these unique kids experience the world.
--it's a big handle. you know this because you are black and blue from its thwackings at present. but there are a lot of services it can leverage, as you said, and i have personally seen these services make a difference in kids and their families. big differences.
--it's nice to have a name. sometimes it's nice to know there are other shiny octagons out there who are going through similar things.

i love you.



Timmarie said...

I just followed over from momastery and am so grateful you are sharing your story so honestly. My son was diagnosed with autism at 2 and I grieved for a long time. You seem to have a delightful, loving family with lots of support. It really does make such a difference. Many blessing to you and your family!

Anonymous said...

You're feelings echoed mine- though you articulate them SOO much more eloquently. My soon-to-be 8 year old is on the spectrum, but barely. He was diagnosed at almost 3 with PDD-NOS. They told us he may be off the spectrum by 6. I kept praying and hoping and willing myself to believe, without even knowing it, that he'd be one of the ones to "outgrow" it. And he really may not technically qualify as medically "on the spectrum" anymore, but I've come to realize that wherever he ends up technically on or off the spectrum - he will always have the same challenges.

And I also echo what some other commenters have said - and I hope it's not putting my foot in my mouth or too soon for you - but autism is, in fact, AWESOME. It had been so frustrating to compare my guy to typical kids and see the ways in which he was "off", and feel nervous and upset, especially the dreaded "he seems fine to me" of onlookers. But now- since the diagnosis and reading up and becoming more familiar - I see those quirks and realize they are gifts. Probably not the gifts I would have chosen if God had left it up to me - but now I'm sooo glad He didn't. And now when my guy does something that's a little off - my heart swells. Because he is more HIM than any other kid I know. And the ways in which he is "off" have become clearer to me, and I am getting to see the world through his eyes, as I try to help him see the world through my eyes, which may be "typical", but neither way need be classified as "normal". They are just different, and I am one of the luckiest moms in the world to have God show me His world in a way I never would have gotten to see otherwise, and sent my son as the tour guide.
Not saying it's not hard sometimes, and there is definitely grief, but it's good. It's very, very good.
Love and hugs - your Simon is captivating, BTW...
Lisa G. in CT

PS Also found your blog through Momastery. Isn't Glennon great? So are you.

christina felten said...

just wanted to let you know that your family is in our thoughts and prayers. we have a daughter with multiple special needs, and at one point they thought she had autism. it turns out, it was epilepsy causing her autistic-like symptoms. the seizures were subclinical but we could always tell when she was having them based on behavior. (she would do things similar to your son...one day she'd be able to cut on a line, the next day she couldn't hold the scissors. and her behaviors are very quirky). since starting AEDs, she has become a totally different kid! she is also on a very high dosage of fish oil (prescription) which has helped a lot with her hyperactivity/aggression issues. feel free to email me if you want more info on our journey to an accurate diagnosis. and don't lose hope! your son is gorgeous and you are such good mamas. hugs!

Mama of 5 said...

Brutiful post. My hubby and I say how fortunate we are that we have each because nobody else "gets it" the same way we do. We too have had IEP meetings like this. I could feel some of my old grief spilling out while reading your post. It ebbs and flows. Just when I think I've adjusted to the way my son is I have another heartbreak. It's a long process. I think a life long process.