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Not Quite Sick But Not Quite Well


On Saturday morning, I wrapped Noah up in two layers of outerwear, a musty-smelling scarf around my head, some vaguely Christmas-y paper around an awkwardly-shaped birthday present and headed out in the snow -- our first of the year -- to attend a preschooler's birthday party. Also our first of the year.

Save for the occasional laid-back house party, we've politely declined all birthday invitations. I know I wrote about Noah and birthday parties -- my memory is suggesting that I very much watered down just how awful our last attempts were, but I simply cannot bring myself to go hunting up the entries to confirm that. Awful. The helpless shock of seeing your child behaving in a way that suggests he has been set on fire, instead of being asked to come sit on a brightly-colored parachute for a minute. The confusion of not knowing what's wrong, the hurt of knowing that whatever it is, your child lacks the verbal skills to tell you about it, and of course: the searing, shameful embarrassment of knowing that all eyes are on you, the parent who cannot control their child. 

We were, not surprisingly, never a very popular playdate choice at Noah's school last year. Except for one family, one mother, one little boy who befriended Noah and I and understood, or who at least attempted to. Her son now attends the Montessori school that we'd also optimistically chosen for Noah before --thankfully -- coming to our senses and swallowing our pride about his real level of need.

And like more friendships than I'd like to admit, we don't talk as much as we should anymore, or get the boys together as much as we should, and it's all my fault because...well, sometimes it hurts to be around Typical Kids. Like being around pregnant bellies when I was trying (and failing) to conceive.

But. She invited us to his birthday party. It was at one of those paint-your-own-pottery places, so no gym equipment, no circle time or song time or multiple transitions. Just sitting and painting.

And so I waffled and debated and fretted both about potential disaster AND selling Noah short -- it's been so long, he's made such progress -- and...DUH, I already told you that we went to the party. (Nice narrative structure there, self.)

Well. It was a disaster. Beyond a disaster. We lasted 20 minutes before Noah had a complete and utter sensory freakout -- imagine something akin to a panic attack crossed with those times when you are almost overcome with the urge to throw some dinner plates at the nearest wall. The 20 minutes prior to the meltdown weren't really much better -- the children were assigned seats and asked to color until everyone arrived and the painting could begin. Noah scribbled halfheartedly with a blue marker while I tried desperately not to look at everyone else's paper. We were surrounded by classmates from last year -- something that I do not doubt contributed to both of our stress levels. They were drawing things. Letters, cats, family members, trees. A younger sibling -- a girl who was probably Ezra's age when I met her -- drew perfect circles and straight lines while Noah held the marker in his fist and banged it into the paper a few times.

"Draw an L, Noah!" I suggested, though as soon as the words were out of my mouth I regretted them. Why not just come out and say it: Stop making us look bad, kid. 

His agitation grew when he realized he was surrounded by children on both sides, and I stupidly didn't think to move him to an empty chair at the end of the table.. A personalized smock appeared, and I stupidly suggested he wear it. After that, it's a blur. I think he kicked me, kicked the table. Screams so loud the pottery rattled on the shelves. A frantic, red-faced dash to the bathroom. My hands on his shoulders, his face, my voice pleading, then rising, my patience sapping, trying to penetrate the force field of the fit, and finally sitting back helplessly watching my son lie on the floor and sob and beg to go home. He breathed an audible sigh of relief when I told him we could.

We left the bathroom and put on our coats, hats, mittens, the musty scarf. I apologized to my friend, gratefully accepted her kind, reassuring hug...and left without another word or look at any of the other parents. 


The craziest thing is this: just a few hours later, we went to a second birthday party. One of the children from the district's special ed program. All afternoon I kept picking up the invitation and staring at the telephone number. I should call. I should cancel. I should just apologize now and spare us all. The party was just at their house, though. The entire PEP class was invited. They'll understand, we reasoned. They'll be...more like us, like Noah.

"And if not, we'll leave," Jason said, as if that had solved just fucking EVERYTHING that morning.

At this party, there were no assigned seats, no smocks, no activities, save for a ribbon-pull pinata that delighted everyone, including Noah. Cupcakes, juice boxes, soda, beer. The children did laps around the house and jostled each other around in the play kitchen and tried to climb into an exersaucer. Noah greeted his classmates with hugs and "I love you's" and was given them in return. When it was time to sing happy birthday, Noah and another little girl both clapped their hands over their ears and howled, and her father and I laughed over how we had to decree NO SINGING at both of their birthdays. "I've never met another kid who does that!" he exclaimed. Everyone wanted to hear about the afternoon program we use, to compare Early Intervention horror stories (we were the winner, with our Early Graduation Of Bullshit and Year Of Mainstream Preschool Terror). "We could switch our sons and no one would ever notice the difference," another mother told me, after watching them play together, referring more to their shared quirks than any physical resemblance. Everyone wanted to plan the class holiday party and rave about our wonderful, lovely teacher.

Noah cried exactly once...when it was time to leave. We'd all overstayed the invitation time by a good 45 minutes. A playdate for the entire class is set for this weekend. 


If you asked me what my number-one goal for Noah is, at least in regards to the next couple years, I would have to say: Mainstream. Get him out of special ed, off his special bus, out of the folder filed under "developmentally delayed."

I believe he can do it -- we had the equivalent of an IEP meeting last night at his private school, and they believe he can do it too, adamant that he is not on the Spectrum, that he is a brilliant little sponge who will be able to attend school with minimal accommodations one day -- though I know that it won't necessarily be an easy goal to reach. There will be more freakouts and judgmental looks and therapy bills and insurance rejections and days where I feel like throwing unpainted pottery at the nearest wall. 

So I'm grateful, in the meantime, to have this cocoon, this soft safe space, full of people like us, and kids like him.


Belinda Gomez

Wonderful. You know--most parents with NT kids aren't as judgy as you think. These days, everyone knows someone who's a little off the scale. I really wouldn't give it a second thought.
You are lucky to have the right fit for Noah, and he's lucky to have you.

Heather Varon

Knowing and understanding our children (including their limitations and abilities) is such an ongoing challenge and it sounds like you're finding a great balance.


I. Freaking. Love. It.

Congrats to Noah on his first successful Birthday party.


Wow... you are awesome... keep up the good work! ;) ;)


Found this video on a parenting kids with special needs site. Thought it fit well with this post:



My youngest brother is on the Spectrum. He's autistic, nonverbal, and in a wonderful public school program.

He was mainstreamed, for a little while, in kindergarten through about second grade. He met some wonderfully compassionate children. Children, who even now as sulking, brooding teenagers, still say hello when they see him in the halls and send him holiday and birthday cards.

I'm just sort of blown away with their compassion. It's a rare thing. And I think something you have to look forward to with Noah is him having a very sincere, deep running sense of compassion. Because he'll have been there. In the cocoon. He'll understand.

And I think that is maybe the most important thing we can teach children. Compassion. And sweet, smart, lovely little Noah will have that in spades.

You are doing a great job. Both you and Jason. And don't you ever, ever forget that.


You know, KayTar is doing the point that they are having to create made up goals for her to keep her in the SPED program for the rest of the year and STILL, birthday parties are when we see all her gaps. She is slower, clumsier, a bit socially is noisy and she can't hear anything with her one good ear. She can't eat the food the other kids have. Birthday parties....ugh


I think you are an amazing mother. He'll get there.


I totally related to this birthday post. Even though my son is in a mainstream preschool and does well, he has "quirks" - sensitivity to loud noises, gets agitated by too much sensory stimulation, sometimes reacts badly to unfamiliar textures, does not appreciate (at all!) the whole birthday at the gym with over-hyper 30 year old man pushing you to march happily in a circle.

We are celebrating his birthday this weekend at our house with cake and sandwiches and drinks and just a few other children. They'll play with his toys. I don't understand party entertainment anyway.


You're amazing - and so are the majority of the comments. I'm happy for the woman whose son with asperger's attends mainstream school - but don't pretend that your awesome school exists everywhere. Sadly, it doesn't. Many times it depends on the administrator at that school. Count yourself among the INCREDIBLY lucky. In our district, even if we PAY for the aide, they aren't allowed into the school system.

Go Noah - you're doing awesome. Amy I bawled when I read this with so many different emotions - you're amazing.


You're a freaking champ. You get up and do it all every day, and I don't think everyone else could.


that first birthday party sounds like a recipe for disaster for most of the kids I know. My daughter is six, and she MIGHT deal OK with "sit down and color" but come ON people! The second party sounds like the ones we have at our house, and we are not accomodating anything, except. perhaps, our desire to have fun at a party.


Do people really expect 4 year olds to enjoy pottery-painting parties? I'm starting to think Noah is the brave soldier standing up against rushed childhoods! Maybe 9 year olds would enjoy a session of painting pottery, but most would probably rather run around and play corny party games. It's way too much to expect a 4 year old to enjoy that stuff.

4 year old parties should be like the second one - loosely structured fun. Imagine a world in which your entire social life consisted of work and corporate events (oh, wait, I don't have to imagine). It sucks. If I could throw myself on the floor and scream to get out of orchestrated corporate crap, I would!

another Amy

I am a teacher of much older kids. Of the ones who have (had?) developmental delays, it is usually pretty obvious who had lots of intervention, patience, and love at an early age. Noah will be fine. You will be fine.

I teared up at the end of the first party story. And then again while reading about the second party--in a good way, of course. You are doing everything right and Noah is obviously a lovely, amazing boy.


I know, as I read all of your posts about Noah and his quirks and his issues and the frustration and the anger and EVERYTHING you go through, that my eldest son is scarily similar to him. When Justin was little (he's now 10) he was BRILLIANT. BRILLIANT! But new situations required 30-45 minutes of prep time. "There may be singing, they may have cake and it might have frosting or it might be cupcakes and there might be ice cream that is melted and the kids might be loud and there could be a dog that barks and and and..."

We never had him diagnosed. I often wonder how his life would be different had we pushed the issue early on. We did a half-hearted attempt at a diagnosis when he was 7 or 8, after years of struggling to get this brilliant kid to be able to cope in a regular school. Finances and poor insurance negated too much help and we just went along, knowing that our high-needs super-sensitive kid would just need different help as he grew up.

The good thing (for him and most definitely Noah) is that he IS "normalish". To the outside eye, he's just a picky eater with a fast temper and inability to let an argument go without explaining and discussing and melting my brain. I always say that if Justin were born 50 years ago, he'd be labeled as "eccentric" and just left at that.

Anyway. Just wanted to send you a virtual hug and say that I've been there and done that. I know what it means to be the parent of the toddler who is flippin the heck out over noises/melted ice cream/wearing a smock/etc. And I know what it is to be the parent of a kid who doesn't. And honestly? Most of the other parents probably AREN'T judging you as much as you perceive them to be. I swear.


I so understand this. Totally.
My son is 5 1/2 and we've had some really difficult years, and the stuff you're going through now is pretty much what we have gone through.
For us birthday parties are something we dread. My son's friends are now turning 6, and it is pretty common for the parents to drop kids off and leave. For us it's not an option, and like you, we have to monitor, and never know if it will all be okay, or if it will be a disaster.
What I'm learning, (and need to be reminded of daily) is that all I can ever do is be my son's friend at parties and other events that are hard for him (I'm not talking about the whole should a parent be a parent or a friend debate).
Matt knows that if he is struggling he can come to me. If he's going to have a meltdown he knows that I won't get angry, I will sit with him and help him calm down and if we need to leave we can.
I don't think there's much more I can do in those situations. And, I think that's exactly what you're doing.
As for other parents ... I HATE the judgement. I get upset by it and angry, but I also know that dealing with it makes me not only stronger but more understanding. I'm the first person now to say to another struggling parent "it's okay. I'm right there with you."
Sorry for the long comment :)


holy crapbarf. We've had a helluva week here on the freakout circuit. I don't think I can ever go back to the Oil Change Place We Went to on Monday ever again.

Next Friday is the winter break holiday party. At a carosel. With lights and noise and 200 screaming children. Our therapist wants us to try it. I want the therapist to wrangle my screaming, hyperventilating, heartbroken daughter to the cheerful sound of carosel music.

May god have mercy on us all.


I've read this blog since my son was a baby (he's almost 4) and he sounds so much like Noah. Birthday parties are a disaster and from the first time he heard the birthday song he hated it and kicked me and thrashed around while everyone sang to him (2nd birthday). He has sensory processing disorder and I hope that one day he, too, will be able to mainstream. He is one of the special needs kids in his class of typical kids and special needs. I read about the second party you went to and I wished my son could have been there too. He would have loved it, I'm sure. Keep up with all the great blog entries. I appreciate them so much.


Reading this takes me back. It gets better. It gets so much better, at least it has for us, thanks to the help we've gotten. You are awesome and you guys are going to do great. Look at the progress he has made already! These kids are so brave, they just blow my mind how they get out there every day and face the things that terrify them. (Honestly, assigned seats and personalized smocks sound kind of scary to me too.)
Just wanted to say, don't be so quick to want to get away from special ed. B is (very successfully!) mainstreamed in her neighborhood K but the extra support she gets from her IEP is key. I will fight tooth and nail to keep that IEP even if all she is getting is some small motor OT once a week; I want to be sure that if/when she hits the middle school bumps we can get her the help she needs. I am not concerned (at this point anyway) about any kind of stigma. Her school has an inclusion program and integrates the "everyone is different and good at different things and that's what makes our school great" message into everything they do. If you can find someplace where the principal is really on board with inclusion it makes all the difference in the world. And if they're not on board you can *bring* them on board. It just takes education. Our K general ed teacher, I have just learned, really resisted the inclusion program when it first came to our school 6 years ago. Now she is the biggest advocate we have. Minds can be broadened.
As far as those "looks" go...I have taken to mentioning my kid's special needs whenever I first meet anyone new. If they freeze up or look uncomfortable, I don't care too much about what they think from then on. Shallow maybe ... but it saves so much time!!


ps just wanted to add that B has almost entirely grown out of the sensory freakouts, as have a bunch of her special ed peers. She still has sensory issues, but she has strategies to compensate for them too. Something to look forward to!
giving you a virtual awkward handpat,


You are so good at this. This blog-writing. My 3 kids are in the bath, I have my laptop balanced on my, well, LAP, next to the tub, and I'm catching up on blogs. A lot of your entries are l-o-o-o-o-o-ng and I always click on them, thinking I won't be able to get through the whole entry before my kids are screaming or crying or drowning or WHATEVER. But I do. I make it through and I laugh a whole lot and I cry a little and I wish the entries were even longer. And I love all that because you have become a symbol for all of us, a symbol of a mom out there that is like us. Happy but still struggling, mostly content but still always making sure she's doing all she can for her family. And all the while, articulating it so fucking RIGHT ON perfectly. You have been and remain my absolute favorite mommy-blogger ever. I think it's a combination of your talent as a writer, your gifts as a mother and, quite frankly, my belief that we are a whole lot alike. Keep up the good work. Keep us all laughing, crying and nodding our heads in agreement. We can't get enough--


I'm so glad that you found a community like that for Noah. It's so important, and it can make a huge difference not only for him, but for you as a parent.


I pray that one day all your dreams and hopes for both Noah and Ezra come true.....


Thanks! I just found your blog and I really needed a laugh! I have a special needs 2.5 year old and we are just getting into the terrible two's. funny me, I thought we might escape them, (a benefit of her condition) but no chance. We are just now trying to deal with the overloads. Thanks!

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