Holiday Giveaway-ish Contest-ness!
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.


Charlie Reece

Oh wow, Amy, what a day for you guys! What a way to juxtapose the worlds you must move through with you amazing Noah. And what an incredible place of acceptance and warmth and understanding you've found -- both for yourself and for your son.

Keep on keepin' on! Mainstreaming is the goal, of course, and Noah will get there, but for now, you're in a good place with good people. Congratulations!


Lady, you made me cry at work -- I am so sorry and so happy all at once. Lots of love to you and Noah.


Had to delurk to say I love this post. My older sibling has cerebral palsy and I grew up with Eli not fitting in anywhere. Eli is now a published author and sought after speaker and makes more money than all of us in our family combined. BTW. Regardless of the "normal", we all need our own form of normal. I am so proud of you and your husband for working so hard to help Noah find his normal.


Ooops, got my email address wrong. It's better this time. :-)


You're doing a good job, amalah!


"If anything can go right, it will." Saw that on a bumper sticker (if it's on a motorcycle is it still a "bumper" sticker?) the other day. Glad it rang true for you and your family this weekend.

Tracy D

Crying here. Been there, done that with the bday party freak out. And supermarket freak out and mall freak out and eat out freak out..... So glad you had a better experience with the 2nd party!!


So, have you seen the Mastercard "priceless" commercial with the kids dancing to George Clinton? Your story about going to a party full of kids like Noah makes me think of the last line of it: "People who understand you: priceless." (And then that makes me imagine Noah dancing to George Clinton, which just makes me giggle.) Hugs to you and Noah.


It must be so hard to remember to compare Noah to NOAH, and how far he has come, than Noah to Other Kids. And thank you for reminding ME of that, too - if there's anything I want to teach my kids, it's that we don't treat anyone differently just because they're not just like us. It's okay for Noah to be Noah, and I'm glad that you're surrounded by people who accept him for exactly who he is - and revel in it.


What a day! I know it's hard, as a mother, to know you're doing the right thing. Let me just tell you--you did the right thing on all counts on this day.
Attempting the first party, going for the second party, all of it. Bravo. Noah is so blessed to have you as his mom. For real. :)

Natasha A.

*smiles* That was a great post. I'm very sorry you had to go through the dark before you saw the light. But I am so happy that Noah had a good time :D


Mainstream for one person isn't mainstream for everyone. Noah marches to a different drummer, but he'll be the one directing the orchestra some day. Enjoy your cocoon.


And you know what? All those people in that cocoon and all those kids are grateful to have you and Noah. As they should be.

Hairy Farmer Family

I read your posts about Noah so closely that my nose is virtually brushing the screen. Your phraseology always encapsulates what I feel, but never have the wherewithal or talent to portray: the force field of the fit is EXACTLY what it bloody well is - I could never quite think how to describe it before.

We are a year or so behind you; I signed Harry up for the county special-needs nursery and pre-school only yesterday. With, I might add, a good deal of wistful thinking about my original high-flown plans for mainstream pre-school this September - yet knowing that my son is a bright little spark of mischief who will, I am sure, go on to do earth-shatteringly kind and admirable things - as well as procuring his mother a damn good seat for all his Nobel prize award-giving ceremonies.

The next time I'm departing from yet another playgroup with a screaming bundle of raging, out-of-control, unreachable-on-all-levels toddler clamped tightly under my arm, I will take some comfort that I'm not the only mother to A) feel frustrated and ashamed and B) think peer-to-peer eye-contact during ignominious departures is highly unnecessary!


I love this post!


Tears of joy for the cocoon.


What a relief the 2nd party must have been!!! Even if he is unable to go "mainstream" he is so amazing and wonderful and will succeed at whatever he wants to as he gets older!!! Especially with the two of youbacking him up!


You made me cry at work. Though I'm proud proud proud of Noah... and you. He's making it in his own time.

Kate @ And Then I Was a Mom

Good for you all for going to that second party, since it must have been so overwhelmingly tempting to skip it. And if I might say, a bunch of four-year-olds running around a house wildly and happily is a much better snapshot of the "normal" world than a bunch of four-year-olds forced to color quietly for 20 freakin' minutes before the actual main activity even begins.

As for any parents who might stare, you stare right back. Then trip 'em on the way out of the party. Just rewards and all that.


I teared up at this entry. I'm so glad that he has his correct cocoon. I'm sure you all will reach further than your goals due to your love and support for each other. He is so lucky to have parents who love and support him and understand that he isn't trying to misbehave, but that he simply right now can't deal. It's inspiring to see how good you guys are.

Heather Ben

way to keep trying, that's all you can do. one day it may be different and it may work. but all you and Noah can do is what you can do.


This is gorgeous, bittersweet, real.

Thank you.


Trying not to cry here. I'm so happy that you have a cocoon.


I love this entry. I don't have any children yet - but, this made me think that "special needs" needs to focus more on the "special" and less on the "needs". Noah sounds like a fantastic little boy - and I am sure he will surpass "mainstream" in no time - If "mainstream" even knows what they are talking about.


Not sure I have ever commented before but your post made me cry - with joy! That your son had such a wonderful time and that all of the parents there could share and have fun is just wonderful! Sorry the first party was so bad - but it had to make the second one that much better!


I've been there. At least this part: the massive tantrum, the funny looks from other parents, the feelings of shame, my anxiety in a stressful situation rubbing off on my child and turning her into the opposite of what I wanted... Oh it hurts. When it happens I quip about her lung power and her opera singing abilities when she shrieks so loud that, as another mother said, "I thought her finger was getting severed, Maclaren-style", (all because I simply told her not to eat the play-doh). But it still hurts when anyone sees our child as much less than the wonderful, loved and simply perfect little person we know. I'm so glad you have a group of people that do see that, don't let go of them! Huge virtual hugs to you for surviving such a half brutal, half wonderful day. Have a drink or three!

Steph the WonderWorrier

This was a beautiful post. I'm glad you guys had a better experience at the second party, it is good to recognize the best 'fit' for Noah so he can get some enjoyment out of the event. :-)

Children come in all different shapes, sizes, and abilities. One day he will find his niche like any of the rest of us, and that's what is important. Whether or not he is in the mainstream classes or not, he will find his own success somehow with the guidance of good teachers and with you and Jason standing by his side. The most important thing IS recognizing who he is and what his needs are, so he does get the right educational support. Good job.

Bachelor Girl

So glad to hear he had a good time at the second party. You guys will get exactly where you need to be.

Sprite's Keeper

"..trying to penetrate the force field of the fit". Exactly what every parent feels when they can't help their child calm down. Sounds like Noah found his normal at the second party and you found yours too. You were around people who understood your normal. Those playdates must rock. :-)


Well people like you and kids like Noah are the reason that compassion and camraderie exist. It's when the going gets rough that we find the kindness and fellowship within ourselves and each other.

Someone quote me, cuz that was genius.


Mainstreaming. :) My nephew is on The Spectrum, and I know that Noah isn't BUT - my nephew is 15 years old, mainstream high-school freshman without an aide, Freshman letter in cross-country, and *high* honor roll.

There is a whole generation of kids that are blazing a bright trail for Noah and his friends to follow.


Tear! You're such a good, brave mommy. :)


Umm - I'm with Noah, that first party sounds bunk. Since when is it a fun time sitting and coloring for 20 mn at a birthday party? The second one sounds much more appropriate for 4 (and 40) year olds.


Echoing Cobblestone above:

My son is (finally, officially) on the spectrum with an Asperger's diagnosis, and there's never been any question of anything but a regular classroom for him. He gets a couple hours a week of OT and speech, alongside another student with complementary issues (bonus: they can work on social skills too). His main teacher sends home a brief summary each day in a communication book, since his episodic memory isn't great (What did you do today? I don't know? But he can tell you everything you ever wanted to know about Legos.) I volunteer a little in his class too so I can get a feel for what's going on.

All of this is in a public school, albeit a really excellent one, though I would be surprised if a good number of the schools near you don't have similarly excellent teachers and support providers.


I love this post so much I read it to my husband. We TOTALLY get where you are coming from. :)

Rock on, Noah! You are going to do just great!


I am crying, damn you. Why you do this is a mystery to me.

It just makes me want to scream, those looks. We get those looks and my kid is mostly "typical." She doesn't transition well, she is sort of the opposite of ADD and can't move very easily between activities. So, when we're at a party and the game that she's really loving ends, she gets upset. Or when they tell the kids to put up their cups and come watch the birthday kid open presents, she throws a fit. It's hard dealing with it and knowing if I should make her transition or if I should just tell her to ignore the mom and finish her damn cupcake if she wants. And the other parent looks don't make it easier.

Seriously, I hope I am stricken temporarily blind if I ever shoot someone one of those looks.


So happy that you all got to enjoy the second party! Everyone needs a cocoon - absolutely everyone. I'm so glad you have found a great one for you and Noah at this time.

bethany actually

I would hug you if I could, Amy, you and Jason both. Uh, if that weren't totally weird and creepy in that internet-blog-stalker kind of way, that is. :-)

I have a nephew who is on the autism spectrum and I know from being around him and talking to my sister-in-law exactly what you mean about how hard it is to be around "normal" kids sometimes. My daughter and her cousin are exactly the same age, and there was a period around the time they were both turning three when my SIL actually emailed me and asked me not to send them any of my little email updates about my daughter that I used to send out to family and friends (we're in the Navy and don't live near any family). She and her husband were having a really hard time dealing with the realization that their son wasn't going to be talking or potty-training or doing anything on a "normal" schedule. Reading those emails about my daughter, whom they loved, was so painful that they took the risk of asking us not to send them for a while. Of COURSE we understood and did as they asked, and eventually they let us know it was okay to add them back to the mailing list.

Also, my daughter is "normal" and it wasn't till her 5th birthday that she let us to sing "Happy Birthday" to her, but she only did so with the express instructions that NO ONE was allowed to clap when she blew out her candles. She still slaps her hands over her ears at others' parties, or when she hears a baby crying, or when too-loud music is playing. We were at a street fair recently when she completely freaked out about some loud music and we had to walk two blocks before she calmed down. What I'm saying with all this is that even the moms of "normal" kids sometimes understand kids like Noah more than you might think, partly because all kids have their own quirks, and partly because we read blogs like this one. Thank you for sharing all you do, Amy, because it makes the rest of us more compassionate.


Awww Noah! I'm glad he has a place where he can fit...and I hope that he eventually grows into more and more places.


Noah can do it. You can do it. I have no doubts.


oh, one more thing. Don't discount Karma. Michael is "typical" and we just pulled him from a school he was having a lot of trouble in. We let him go to a b-day party with his friends from that school, and shocking, he did terrible at the party. Funny thing, he has not had a problem at his new school. So, karma speaks volumes. Kids pick up on stress.

Aunt Becky

Amy, this gives me so much hope. I'm so, so happy for you.


I'm sorry that you have suffered "the searing, shameful embarrassment of knowing that all eyes are on you, the parent who cannot control their child". You don't fit into that category at all - those parents are the ones whose kid runs wild and who at most make halfhearted attempts to get the child to behave and then give up and let him go crazy. You can and do "control" your child (or, more accurately, the situation), by acting appropriately - you try to make it work for him, and when it doesn't, you remove him, first to the bathroom to see if it's a temporary problem, and then home when you realize it won't get better. I'm sorry that it's more difficult for Noah than for most children, but please don't blame yourself. My guess is that most of the parents there were mentally giving you a "kind, reassuring hug" and at the same time silently thanking you for removing Noah from a situation that he couldn't handle.


What a day! I have to say, the second party sounded so much better! I think we try to to structure way too much in our lives anyway. Sounds like the kids had a blast at the second party, too.

I'm planning my daughter's first birthday party this weekend, and this is the extent of it: cake, ice cream, kids, toys, balloons. 2 hours. Whatever happens, happens. :) You and Noah are welcome to come!

Jamie Green

I see many similarities between your life and mine. I guess this might sound blog stalker like, but I deal with similar issues with my 4 year old. Your post about the county IEP process made me feel so much better about my son's situation, thank you. Email me, we could arrange a playdate and I like to drink wine!


Oh, Amy.

What a beautifully written post. Cocoons are just fine places to hang out, thank you very much.

Noah - you will be just fine. And, Amy & Jason - you will be too.

Much love your way.


You do so much GOOD for Noah and kids like him with these posts. I'm sure it's difficult, but hopefully cathartic, for you to write them. But it's IMPORTANT for people who don't have kids like Noah to read them. I have a 4-year-old daughter with the usual incomprehensible 4-year-old quirks, but when I see a child who reacts like Noah I have a much greater understanding of what drives him (stress and panic - not naugtiness) from "knowing" you and Noah. Thanks for teaching us a little about your world and his and hopefully we can help pave the way for the families like yours that we run across in life. Your tenacity and devotion and fierce support of Noah and your family are blessings to them.

kim at allconsuming

Oh dude,
I'm not sure you realise how timely this is in my universe. For you see our 'special not so little anymore guy' is now 11. One more year of primary school and then high school. Moving from a small caring primary school where he has been in a mainstream class with an aide for part of the day and where more kids say 'hi Oscar' than I even recognise when we're at the shops (and when I ask who they are he just shrugs) to a HUGE high school setting with kids going through puberty. No aide (while he would still receive funding it goes no where near enough to give one-on-one aide time in highschool) and who don't know him.
We've just had a meeting at a comprehensive government high school and it was incredibly positive. Open, honest, frank discussions - a partnership already forming. But...
There is a private special school also on our list to consider - a school which has just been rebuilt with its own pool and gym. With only two classes of 10 in each year group, each class with a teacher and an aide all.the.time.
And I think, how would we manage the expense.
I think, but he's not like those other 'special' kids. He'll be freaked out by being with them after six years of being in a mainstream environment.
I think he'll be cared for, allowances will be made in a we-don't-have-to-have-a-meeting-about-this-we-just-get-it kind of way.
I think he might make some real friendships.

But then all the research shows that kids with special needs who have been mainstreamed succeed in adult job placement programs at a rate of something like 88%, compared to kids who have been in a special class in a mainstream school (another option) or in a special school whose success rate is something like 33%.

Would I be doing him the ultimate disservice? To put him in an environment where he can just be himself rather than trying to keep up and strives to conform to normal?

And on and on the anxiety goes.

Your story about the successful birthday party has cleared a little of the fog from my mind.



Extra big hugs to you and to Noah. You had me crying again for your morning, your honesty, and your victorious afternoon.

Big, big hugs!



I think you are doing an awesome job with Noah. And try to nevermind those people. If you were a crap parent, you would have let him meltdown on the floor in front of them without a second thought, but you didn't.
You are a great mom who cares about her kid, even when your patience is sapped.
And besides, karma's a bitch. Those nasty looks come back to haunt them.


Yeah Noah!


you guys are such amazing parents. period.


I've read here for a long time, and I even introduced myself and chatted with you at Blogher this past summer, but haven't really commented until now (so I guess I'm sort of online de-lurking?), but this post just makes me want to give you and Noah a huge hug. What a poignant, stark difference between the two environments, and what a tremendously brave step to even take him to the second party.

Here's a question for you, and I legitimately don't know the answer: is there anything the "mainstream" parents could have done differently to have helped the situation for you and Noah? Or, another way to put it: I don't ever want for another parent or child (mainstream, not mainstream, or somewhere in between) to feel like there's any judgment or anything other than commiseration over how sometimes our kids just aren't behaving how we had hoped (for whatever the reason). Or is commiseration from parents of "mainstream" kids (and I use airquotes, because I'm not even so sure about the labels and what the labels imply, you know) not helpful because they don't REALLY understand?

Ugh, I hope this doesn't read as offensive in any way, I'm just genuinely curious as to what other parents can do to help. Does that make sense?


Thank you thank you thank you for going to the second party and believing in your son and yourself.
We love you.


oh boy do I know exactly what you're talking about. To this day I miss my bipolar/ADHD/SPD kiddo's special needs preschool and the early intervention group we worked with. It's lonely out here with the 'normals' in a regular 1st grade classroom, but if you keep doing what you're doing and learning what you're learning and supporting your son as he learns to support himself you'll eventually get where you find that support from the 'normal' parent, or you'll feel confident and comfortable defending yourself and your son. I don't often discuss my son's dx with strangers or acquaintances, but sometimes peoples' reactions to his behavior require a response, and I've learned to say "Tristan has a mood disorder called Early Onset Bipolar disorder. Usually he controls it very well but sometimes when he's overstimulated or cycling he can't control his actions, and I need a minute to calm him down"...or we need to leave or whatever is appropriate. People don't understand because they don't KNOW, and while it's just weird to go around saying it all the time if the situation warrants it feel free to speak up. People almost always react positively and it takes at least a little of the sting out of the looks and comments when they apologize afterwards :S


hugs! been there, have done the birthday party where my son almost dislocated my arm by jumping on my purse to save himself from laughing children, watched him stand stone silent while the rest of his class sang songs at the school assembly, hiding in the front hall closet at his own b-day party...have also been there when it was fantastic, fun and glad you had that on Saturday!


To all of us struggling with raising our children as best as we know how! *raises glass to toast us all*(and I'm with the others who stated that a sit-down and color (or paint) party is ridiculous for 4-year-olds! My four-year-old would have broken everything around him in ten minutes!)


Oh, Amy. I can't even imagine. But what a beautiful post. Thank you for sharing.

Hugs to you and Noah.


I only wish I had a cocoon for my 3, almost 4 year old son who just doesn't qualify to fit into any special needs program despite the fact that he is majorly speech delayed (he is still mostly echolaic and very delayed on comprehension, he can't tell us about his day or relay a story. His articulation also needs a lot of working on) and somewhat gross motor delayed and a lot fine motor delayed (he also would either stab the paper with a pen or just run the pen back and forth over and over). He is in limbo, somewhere between mainstream and special needs, so at present he is in the mainstream getting private speech therapy and doing expensive activities like kindy gym and toddler sports, and he will be repeating pre-school next year. He is just so, so far behind his peers. I keep telling myself that he will do it in his own time with our help but it is frustrating and heartbreaking and I can't help thinking that I have failed him.
We have yet to be invited to any parties, and each time I see another invite in another child's locker at pre-school I die a little more inside for him.
Anyway I wanted to say thank you for sharing his life with us as there are a lot of people in the same situation so it is good to know that we are not alone and there is hope. I was heartened by the second party story and glad that he could find a place where he could be Noah, the amazing child that he is.
Oh and I just wish that more parents didn't take for granted their 'normal' kids and kept their looks to themselves.


This was incredibly honest, and beautifully so. Thank you for opening up your life and your heart to all of us crazy internet strangers.


You are an amazing mother, and Noah is an amazing kid! I am so glad you went to that second birthday party afterall!!


What a beautiful post. I've been following your story, Noah's story, and cheering him along. I've been so happy to hear the great stories about how well he's doing in his new school . . .

I'm just beginning the "developmentally delayed" and "early intervention" journey with my one-year-old daughter, and still struggling with the fact that although this isn't the path I'd imagined, its our path, and it'll be okay.

I've been in a rough spot lately, and I just read your post and thought . . . "I want a cocoon." How wonderful that you got to share such a great afternoon with parents that just "get it."


I wonder what color Noah sees when a bunch of squeely tuneless preschoolers sing Happy Birthday?

Rage Against the Minivan

Oh, I'm so sorry about that first party. So sorry. I have been there - I know that hot, panicky feeling as you leave with a flailing child. It sucks. Thank God for the cocoon you've found.

momof three

simply no words...been there. your words are so comforting. keep writing. you will get through this, too.


Remind me to tell you sometime about the birthday party at Dave and Busters my husband insisted it would be a good idea to take our son to. (This was not that long post-diagnosis, and my husband was still not quite past the stage of stubbornly believing our kid was mostly normal.)

That Dave and Busters story would make a good horror movie.

If you are ever in St. Louis, you and Noah are invited to a very low-key playdate. No fine motor activities or singing required.


About the paint your own pottery place...a friend and I went to one two weekends ago and it was the most frustrating four hours of my life. And I'm 21 and having finals this week...yet I still shudder thinking about that place. Tell Noah he is not alone.

Jennifer @ Here-I-Stand

I'm with some of the other commenters on paint your own pottery for--4 year olds? Pretty much every birthday party I've had for my 7-year-old I've over-planned. The kids sat through maybe one of the planned games/activities and mostly to humor the strange adult who thought they would need such things to amuse themselves. The best parties we've had have been where we provide the cake and let the kiddos time at aq

Jennifer @ Here-I-Stand

Ack! baby hit the keyboard. But point was b-day party I ever hosted was at a playground. Cake, drinks, and running around like crazy with friends.



I have tears in my eyes at work...

So sorry that you had such a hard time at the first party and glad that your day got better.

Love your blog and your boys are beautiful.



I just want to give you the biggest hug ever!

Sarah, Goon Squad Sarah

I'm not sure what kind of robots were at the first party but aren't meltdowns at birthday parties completely normal?

Maybe I just hang out with a lot of kids that have sensory sensitivities but the hands over the ears thing is something I see all of the time.

But beyond that, a lot of those kids grow out of it, or at least get better at it and you are doing exactly the right thing for Noah but paying attention to his needs and getting him the help he needs.

I have grown family members who want to throw their hands over their ears and scream at loud birthday parties but they have learned to grit their teeth until the singing is over.


Amy, I have a child with the same diagnosis as Noah. She's going to be 6 next week, and I could have written this post. She's now mainstreamed and doing beautifully in a full day kindergarten classroom with minimal accommodations. Hang in there.

Kim S.

I'm so glad you went to the second party! No matter what the circumstances, it is an amazing feeling to feel safe and connected with other parents and kids. And really? Any four-year-old is going to be happier running around creating their own fun than sitting and painting a pot. Let the kids loose, man!

anna samantha

This is so bittersweet for me. My oldest son was just like Noah when he was little and I can't tell you how many times I seethed with rage at his inability to just function already damn it!!! He wasn't diagnosed with anything until 4th grade and then it was only dyslexia which was supposed to explain his aversion to and paralyzing fear of soft clothing and sitting beside classmates with tuna sandwiches in their lunchboxes. It didn't make much sense to me but hey, I wasn't the expert. I wavered between being supportive and undestanding and just flat out embarrassed by his behavior. It was hell for all of us. When I read posts like this it makes me sad for the support he (and we) missed out on. We muddled through and he is a fantastic 25 year old guy but sometimes I can't help but wish I'd been more insistant that the school do more investigating and I wish I hadn't wanted there to be nothing wrong so badly that I let myself believe they were right and that sometimes my kid was a just a complete jerk. The older he got the more he developed his own coping skills but *sigh* he shouldn't have had to. The cocoon sounds like a lovely place to be. Noah is a lucky little guy.


For me, the hardest part as Drew gets older is when the other kids ask him why he does what he does. I literally feel a sharp pain in my chest, like a knife is shooting through. I can handle the judgey parents...I can stare them down. I just can't emotionally cope when a peer judges him. They are so close to close to typical ( boring, if you ask me) and it is those quirks that make them who they are. I just wish fewer people were so critical.


Oh, God Bless you and your Noah. I'm so glad the second party went so well. Your stories are exactly why I have yet to accept invitations to a playdate for my almost 3 year old son. He isn't on the spectrum, but he's non-verbal outside of the home, and a little quirky.

I am so relieved to hear that when he starts preschool in January, we will be there with people "like us." We can have parties and playdates, and no one will look at my child and wonder why he doesn't want to walk on the foam mats at the kiddie gym...

I am so glad that Noah is doing so well in preschool! What a blessing you all are for each other.


Beautiful writing as always!
Thank you for sharing with us.


OK, over at Advice Smackdown you told another mom to quit calling herself "Worst Mom Ever," so quit labeling your actions at the first party as "stupid." It's OK. You reacted as you did and there is no need to blame yourself. It's really, really OK.

Amie Simmons

jeez! I cried twice in that post. I think that is a record. I think other parents understand more than you realize at that moment of insanity. And if they don't...f' 'em because their kids are not half has cool as Noah.


these posts of yours are always my favorites-though it can't be easy to write them or live them. The second birthday sounds like a lot more fun though--who want assigned seats and activities? And beer is always welcome. Chin up, you all are doing Noah right.


You are an amazing mother.

Miss Britt

I don't think that need for a cocoon ever goes away. We all want to know, on some level, that we're not crazy. And if someone is like us, then, you know, we must be kind of OK.

See also: reason the blogosphere exists.


This post reminds me of me and other deaf children. Almost all hearing parents of deaf children want their child to mainstream. The thing is, we will never, ever be hearing and we will never, ever fit in. It's just the way the world works. The best thing for deaf children and other children with different abilities is to be surrounded by those who walk the same path because we understand each other better than other people do. I can see that Noah feels more at ease in situations where there are no expectations from him and where he does not need to fit in the "mold". When Noah is at ease, you are at ease, too. While you may envision mainstreaming for him, keep in mind that he may still need to be with others who are like him. Just so he doesn't feel alone or feel like an outsider.


Sounds like a hell of a day. And good for Noah (and y'all) that it could end well, with a place where he feels good and happy.

You're doing very well and should be proud.


I try hard to think and plan for the future without worrying too much about the future while also keeping myself and my son (and other kids) as happy as possible in the present. It is a bitch of a job. Go easy on yourself.

Heather Z

Wonderful post, both in the way you captured the day you all spent, and in the way you reflected it through Noah's eyes. I do agree with the commenter who said, "My guess is that most of the parents there were mentally giving you a "kind, reassuring hug" and at the same time silently thanking you for removing Noah from a situation that he couldn't handle." I'm sure some of the looks you get from other adults are judgmental. But a lot of us just understand, and feel for you all, when things get hard. Even those of us with "typical" kids.


I read this earlier with my baby boy in my arms and it brought me to tears. You write so well that your description of that first party made the pain you felt for him palpable. I'm so glad he's found his tribe with the kids from his new program. I'm sure it's not what you imagined for him, but so great that he knows he's not alone in feeling the way he does. Every kid going through this deserves a mama as tuned in to him as you are. Noah's lucky to have you.


You tell it so beautifully. Sensory issues run on my side of the family. I get it. I get needing the seat on the end and not wanting to wear an apron. When you're surrounded by people who don't get it, it exacerbates the sensory imbalances. And when you're around people who do, who can say, "we could switch our sons and no one would know the difference" it positive affects the senses. Makes you want to hug, and not close people off.

I love this story.


Amy, Did you read that story that's been up on the CNN website for a few days? It's about a 13 year old boy who was diagnosed autistic at 2, and after years and years of persistence and therapy with his parents and OT's - he "beat" his diagnosis and was de-labeled autistic. He is now a normal functioning teenager. The home videos of him as a little boy were really quite a moving aspect of the piece. Watch it if you can track it down.

I thought of you guys and the work you're doing for/with Noah, and I know he will also turn out to be a "mainstream" kid by the time he's a teen -- and even if he is a bit quirky, I know many many adults who have "quirks" and it hasn't stopped them from being successful people. :-)


I cried too. He will make it, it will be FINE.


Do you have earphones he can wear? That REALLY helped my son (who is eerily similar to Noah-girl, I know your paaaaaaaaaaaaain!) attend any kind of noisy stuff. Movie theatres-no way, Jose. B-day parties-Are You NUTS?! SpeEd birthday parties, sure - no disco balls, lights and noise at those.

If you have a Pump It Up or other jumpy castle place, that would be a perfect party for Noah. You guys, Noah, and 8 of his buddies (WITH THEIR PARENT/S. No lights-off time, no loud music. Probably no party room. Just running, jumping and sliding.

Noah will eventually acclimate to a noisy world. But he won't be comfy in noisy situations, and you'll need to provide lots of down time at home.

We had 3 years of Special Ed preschool (GET AN EXTRA YEAR, IF you can - Noah has a late birthday) and then we mainstreamed him. Still barely talking, still sometimes pitching fits. Our school got him a wiggle seat, headphones and lots of time away off to himself (even under a table if that's what he needed).

This week, we are donating our beloved train table (NOT the trains!), our Pacific Play Tent teepee tent that Ryan spent alot of time peeking out of while he decompressed, and our Rescue Hero figures to our old preschool. With much love and affection. That school helped Ryan learn to function, talk, play WITH other children. Huge. In his current 'normal' peer group, he does not appear different.
Noah will get there. But ix-nay on the parties unless they're with your group. It's too hard on you and Noah!


I'm struggling with this very thing right now too. Keeping him off the spectrum. We're in the midst of going through organizing all of his teachers together, and his paperwork for transition to the IU. The teachers don't seem to think he'll get picked up, unless he has a diagnosis. So the question begs, do I accept a PDD-NOS diagnosis, just to get him into the IU and help him adapt to life with sensory issues, and fine tune his language processing? Or do I just let it go and then mainstream him without the IU, which I know would help him in the long run. His records could be sealed, of course, and the diagnosis for reasons of just helping him get services is probably what I'm going to have to do.

Emily Krawczyk

Thank you again for such an honest and open posting. I have been there done that so many times. To this day, bday invitations stress both my husband and I out. We want to let him try. We want so badly for him to have fun at things five year olds think are fun. Then we also, don't want to go. Don't want to have our child be the "entertainment" for others. As you know, not eveyone is understanding or nice. I refuse to allow him to the "that" kid that everyone stares at and shakes their head. Bravo for having courage. I need to do that more often myself. Being in the comfort of other kids and parents of similliar challenges is always better. Just thank you for this. Makes me feel not so alone. My son is on the spectrum. I can tell you this though - will hard work and dedicatoin - mainstream is achieveable. Carson started mainstream kindergarden this fall. It has been amazing to watch him grow and enjoy school.

Jessica V

MsCellania has a great point about Noah's birthday and considering an extra year of preschool. I just attended a lecture about the correlation of cut off dates for school enrollment and overall test scores, and was hugely surprised. Apparently states that have the highest test scores (maybe Indiana?) also have the earliest cut off dates (birthdays before July 1 - I think). In comparison, California's cut off date is Dec. 1, and our test scores are pretty low. Something to consider - especially in light of how well he's doing in school now, maybe that extra year would really help you get to your goal of mainstreaming! Either way (and I'm sure you are already thinking about this stuff - don't mean to push assvice, I was just really surprised at the correlation between dates and test scores, and the importance of making sure the kids are where they need to be, developmentally, before they have to really start learning academically and the focus shifts from motor skills) - I just wanted to de-lurk to say that I love hearing about your family, the funny and the fumbles, and wanted to send a virtual hug to you all!


I've gotten to hang with Noah a couple of times and I always come away with the same impression: Noah = awesome.

F the other parents and their looks. They don't know and frankly, they just don't matter.

Melvin of Quotes

You are so brave.


Just took my not-so-typical 7 year old to a bowling party... It sucked. He didn't like it at all, while his little brother (typical) had a simply wonderful time. It's so different, between the two.

I used to be sad that the 7 year old wasn't invited to more parties, but then, they are awfully hard to attend. It's a whole different world in (not) typical land.


Hi Amy,

I've been a long time reader, but I'm a first time commenter. I just want to say that I think you're amazing. And I think Noah is amazing.
And I hate that you guys have these bad days, but I also think you appreciate the good days so much more than most... and that's amazing, too. It's so easy to take people, situations, life for granted. But you don't... you don't take any of it for granted, and we should all strive to be more like you. Noah will get there. I know I don't know him, but I believe in him SO much.


I haven't written in awhile, 3 kids are keeping me away from the blogs as much as I'd like...but I wanted to just say THANK YOU for sharing. You're a rockin' mom!

The comments to this entry are closed.