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« Holiday Giveaway-ish Contest-ness! | Main | Not Quite Sick But Not Quite Well »

Cocoon

December 08, 2009

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.

Posted at 02:23 PM in dyspraxia, Noah, SPD, speech delays | Permalink

Comments

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!

Posted by: Charlie Reece | December 08, 2009 at 02:30 PM

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

Posted by: Kate | December 08, 2009 at 02:31 PM

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.

Posted by: Jessica | December 08, 2009 at 02:32 PM

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

Posted by: Jessica | December 08, 2009 at 02:32 PM

You're doing a good job, amalah!

Posted by: mswas | December 08, 2009 at 02:33 PM

"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.

Posted by: Breezy | December 08, 2009 at 02:34 PM

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!!

Posted by: Tracy D | December 08, 2009 at 02:34 PM

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.

Posted by: @tiffany | December 08, 2009 at 02:35 PM

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.

Posted by: Emily | December 08, 2009 at 02:37 PM

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. :)

Posted by: Sara | December 08, 2009 at 02:38 PM

*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

Posted by: Natasha A. | December 08, 2009 at 02:40 PM

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.

Posted by: Judy | December 08, 2009 at 02:42 PM

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.

Posted by: LauraL | December 08, 2009 at 02:43 PM

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!

Posted by: Hairy Farmer Family | December 08, 2009 at 02:46 PM

I love this post!

Posted by: liz | December 08, 2009 at 02:53 PM

Tears of joy for the cocoon.

Posted by: Kim | December 08, 2009 at 02:54 PM

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!

Posted by: Heather | December 08, 2009 at 02:59 PM

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

Posted by: meghan | December 08, 2009 at 03:09 PM

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.

Posted by: Kate @ And Then I Was a Mom | December 08, 2009 at 03:11 PM

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.

Posted by: Bethany | December 08, 2009 at 03:11 PM

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.

Posted by: Heather Ben | December 08, 2009 at 03:14 PM

This is gorgeous, bittersweet, real.

Thank you.

Posted by: Nancy | December 08, 2009 at 03:15 PM

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

Posted by: Hope | December 08, 2009 at 03:16 PM

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.

Posted by: Anya | December 08, 2009 at 03:17 PM

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!

Posted by: Bren | December 08, 2009 at 03:22 PM

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!

Posted by: Joyce | December 08, 2009 at 03:24 PM

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.

Posted by: Steph the WonderWorrier | December 08, 2009 at 03:26 PM

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

Posted by: Bachelor Girl | December 08, 2009 at 03:28 PM

"..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. :-)

Posted by: Sprite's Keeper | December 08, 2009 at 03:30 PM

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.

Posted by: Liz | December 08, 2009 at 03:36 PM

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.

Posted by: Cobblestone | December 08, 2009 at 03:39 PM

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

Posted by: Belle | December 08, 2009 at 03:42 PM

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.

Posted by: Rosie | December 08, 2009 at 03:44 PM

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.

Posted by: Mouse | December 08, 2009 at 03:49 PM

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!

Posted by: Tam. | December 08, 2009 at 03:49 PM

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.

Posted by: Jessi | December 08, 2009 at 03:53 PM

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.

Posted by: Stephanie | December 08, 2009 at 03:55 PM

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.

Posted by: bethany actually | December 08, 2009 at 03:57 PM

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.

Posted by: Heather | December 08, 2009 at 04:24 PM

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

Posted by: jodifur | December 08, 2009 at 04:24 PM

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.

Posted by: jodifur | December 08, 2009 at 04:40 PM

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

Posted by: Aunt Becky | December 08, 2009 at 04:43 PM

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.

Posted by: MJ | December 08, 2009 at 04:46 PM

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!

Posted by: thebonmama | December 08, 2009 at 04:52 PM

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!

Posted by: Jamie Green | December 08, 2009 at 05:20 PM

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.

Posted by: Deb | December 08, 2009 at 05:23 PM

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.

Posted by: Amy | December 08, 2009 at 05:41 PM

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 all.those.kids.going.through.puberty 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.

Posted by: kim at allconsuming | December 08, 2009 at 05:43 PM

Amy,

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!

Angie

Posted by: angatwork | December 08, 2009 at 05:44 PM

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.

Posted by: Sara | December 08, 2009 at 05:50 PM
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