The Christmas That Ate Everything
Perpetuum Momentum

Mr. Fixit

We have an IEP meeting today, the first of two IEP meetings scheduled over the next few months. For this year is Noah's re-evaluation year, the year he's due for...wait for it, oh, you'll never guess...a re-evaluation of his strengths and weaknesses and needs and services, up to an including the Big Label that keeps him in special education and keeps my mother-in-law up at night for fear of his PERMANENT RECORD and her continued, unshakable belief that the public school system is legally allowed to tie him to a cheerful Circle Time Chair and forcibly inject Ritalin into his veins. IT HAPPENS. SNOPES IS IN ON IT TOO.

This particular meeting is, quite frankly, going to be bullshit. Not much more than a procedural checkpoint. We will show up and be told about all the different evaluations and testing procedures they plan to do before our next IEP meeting, the big one that will determine his placement for first grade. (Where there are no Circle Time Chairs, but I believe you may be able to request one of those coin-operated massage recliners for your child's Clockwork Orange-style med drip. Fingers crossed!) They will hand us five trees' worth of paper detailing everything we just talked about and our 17th copy of the Parental Rights & Responsibilities handbook that we cannot turn down because they found a typo on page 47 of the last version, thank you and we'll see you again in a couple months, time for the next family, moving on, thanks. 

***

At almost half past six years old, Noah has no real trace of a speech delay, the thing that started All Of This. He never shuts up, actually. Sometimes his grammar is a tad mixed up and full of extra words that buy him precious processing seconds, and he still adorably pronounces V as B. (As in "This lebel of Plants Bersus Zombies is really hard.") But other than that, he's your typical chatty exuberant omg inside voice, Noah kid. Bonus: he's learned all kinds of delightful words from his classmates, or at least he thinks he has. 

"Damage!" he says, deviously scanning my face for a reaction. "Beenis slug! Poople tale!"

His brain seems to be running a constant loop of things he's seen or heard -- usually TV or movies which he memorizes like a human tape recorder -- and he has a hard time turning off the recall or understanding that not everybody else in the room has any idea what he's talking about when he randomly decides to talk about how the bad bird was up on the roof but then the thing fell down and that was funny, right? Right? Right Mom? Right? 

"What are you talking about?" I usually end up asking, exasperated that I am unable to coax more than five words from him about his day at school but will get several hundred about some bit of an Angry Birds fan video he watched once on YouTube.

The thing is, TV and movies help, too, especially with the bigger social picture and his ongoing issues with rigidity and anxiety. The Diary of a Wimpy Kid movies and books, for example, maybe play to his current obsession with potty talk than I'd like (OMG THE MOTHERFUCKING IRONY), but have completely changed the way he treats his friends, and especially Ezra. "I'm not a mean brother like Rodrick," he says. "I'm a nice brother. I'm a friend brother."

The various iterations of Star Trek -- with different costumes and ship details and characters and hell, even actors -- have been hugely helpful when he's confronted with something being "different" or "not normal." Before that, Star Wars and Harry Potter and The Wizard of Oz taught him how to use his imagination.

And Kung Fu Panda 2, of all things, gave us the phrase "inner peace" as an effective code for "rest your body" or "holy sensory freakout child, please calm dowwwwwwn." 

And the auditory recall seems to work at school, too, despite how easily distracted he is by...well, EVERYTHING. The wiggly leg on his chair. The edge of his shirt sleeves. That other kid who is in time out for saying Something That Sounds A Lot Like "Damage." Anything and everything in the classroom that may have been moved from its usual location. The sound his mouth makes when he blows air out like this or like that.

Despite all the distractions, he's learning. He's reading. He's writing. He's drawing elaborate re-tellings of his favorite movies comic-book style on the wide sheets of paper we set out on his kindergarten-teacher-recommended Writing Station, up to and including the closing credits. His fine motor skills have never been better, and his teacher even declared his handwriting "beautiful," especially for a kid who only really figured out how to hold a crayon properly a year or so ago. 

He says he hates school, which of course bothers me, but I sort of think that's the point: I roll my eyes at "damage" and "fartle fart" and "pooper diaper" but have a hard-to-resist kneejerk reaction to "I hate school." Why? Why do you hate school? What's wrong? What's happening there? Is it your teacher? The other kids? TELL ME SO I CAN FIX IT. I CAN CALL ANOTHER IEP MEETING AND FIX IT.

I should know by now it doesn't exactly work like that. Sure, there are things about Noah that I could cautiously, inelegantly call "fixed" or "resolved." Things that took years of therapy and effort and money. And other things that simply faded away with a little extra time: maturity on his part, understanding and creative thinking on mine. And other, other things that found unlikely, almost sudden solutions: A curved exit ramp, Star Wars, karate or sometimes just actual, real-life magic

And of course there are still other things. Big things, subtle things, question-marky-let's-keep-our-eye-on-that things. The IEP helps with some of those things, along with OT and diet and a truckload of patience, so we keep chugging along and showing up and doing everything we possibly can to help, to guide, to aid.

But not to "fix."

Because you can't fix something that isn't broken. And my child is not, and never has been, broken

Xmas2011-03

 

Comments

Laura in PA

"I'm a friend brother"--that is so sweet!

Brandy K

YES! Someone said to me the other day, upon learning my son has autism, "Oh, I am so sorry!" I said, "Why? There is nothing wrong with my son, he is simply, wonderfully, exasperatingly different."

Jaime

He just seems so grown up!

I sort of struggled with an issue of hitting that got my kid kicked out of daycare, but turned out to be an issue with the daycare asshole, not with my child. It took me awhile and a lot of monitoring my son before I realized that he didn't have the problem. She did.

This has nothing to do with you're situation, I don't think. Your post just made me think of it because I spent too much time worrying that I was doing something wrong and that I needed to fix whatever was broken.

But it turns out that there was nothing about him that was broken.

(Here's my post about that. I still hate that woman. http://jaimalaya.blogspot.com/2011/11/walking-wound.html)

Lucy

Noah is doing so brilliantly! He so reminds me of my Toby, who is almost 8. Toby didn't talk until he was four, now he is a walking encyclopaedia! He also loves cartooning, which is fabulous as they have to focus on emotions, facial expressions, gestures, situations - what better self-therapy? And you are so right, Noah is not broken. Just like my Toby isn't broken. We were devastated to find Toby's one-to-one had told him, in no uncertain terms, that yes he does 'have something wrong with him'. How do we undo such a thing? And should we be surprised that our charming, happy boy, can now turn to tears and say 'I know I've got Aspergers for the rest of my life and I know I've got no social skills'. It's so upsetting. But that's our story. I love reading about Noah and am so inspired by him, and my Toby.

Liza

Your parenting and Noah's progression with it, inspires me.

Thanks for being such a good Mum to him and your other little guys too.

It swells my heart to know that boys are growing up with guidance and help for the areas in which they struggle.

My father is dyslexic and during his schooling (some 40 years ago now) they told him he was retarded, stupid etc. It still breaks my heart to think about.

I'm so thankful times are changing!

kristen

"I'm a friend brother." OH MY HEART.

Also, Star Wars and Harry Potter did much for me as a kid, too. Noah's so cool.

MJ

Wow, I'm struggling as I learn Spanish to pronouce a V like a B (kind of - and also vice versa), and Noah has it down pat already. Think how great that will be for him in high school!

JC

I think you are lucky you got him and he is lucky he got you in the big, cosmic crapshoot called life.

Erin

What a great description of your child... just in general. It's so hard to describe your own kid sometimes, isn't it?

I wonder about TV. I know what all the studies say so I have dutifully limited TV to ALMOST none until my son is 2 (almost there!) but he's a late/slow talker and I wonder if TV might have actually helped. He got a Sesame St counting DVD for Xmas and is already reciting numbers in order. I just wonder...

Slightly Perfect

IDK why, but this reminded me of your entry on Noah's freaking out in the car because you didn't know what "the blue song" was.

Megan

What JC said. ^^

Kris

I love you for writing this all out. My little one is 3-1/2, but he's on the spectrum with SPD, too; and these kind of entries often give me hope when we're having a day that's covered in shit from sunrise to sunset.

RebeccaF.

Hang in there, you guys. I feel sorry for anyone who suggests to you that Noah is "broken". There is nothing more ferocious than mamas. Just ask my husband.

Angela N

I wouldn't worry too much that Noah doesn't like school, unless there's some particular reason he doesn't. I HATED school from kindergarten until high school, and then it became... merely OK. And I was in the gifted and talented program! School was not a struggle, but I just hated it. Boring, wasted time, could be at home playing instead... maybe that's how Noah feels. In any case it doesn't mean he's going to end up being a bad student :)

Angela N

I forgot to say that when I was in kindergarten, I asked my mom how many more years I had to go to school. "Ummm... 12?" she replied. :-)

Nancy

You are such a good mom. And Noah is a "friend brother." That is so sweet.

Karen

Awesome. Once again I find myself shaking my head because our boys are so similar.

Our school doesn't follow up with IEP meetings they way they should so you are inspiring me to call for a progress meeting.

Emily

My mom was a 1st grade teacher for 30+ years. My brother had/has ADD. Her experience is that MOST little boys shouldn't be forced into traditional school until they are 10! Her feeling is that MOST - even the 'normal' ones - aren't ready to be confined to a class rooms strict rules (ie, sit in a chair, raise your hand, don't hit things, keep your shirt on).

Being diagnosed with any 'disorder' only goes so far. I don't think 90% of these kids are actually broken, I think they just need to be unraveled.

My mom once told me that she really regretted putting my brother on Ritalin vs doing more behavioral modification techniques. It was the 80's and she was busy being a teacher (her words - she regrets not being able to be a SAHM).

Noah will be ok because he has champions in his corner.

Leslie

"Because you can't fix something that isn't broken. And my child is not, and never has been, broken."

AMEN! I love this, as usual.

Laura

My son has ADHD - and I once heard him say he takes medicine because his brain doesn't work right. HEARTBREAK. Since that day I have coached him, the teacher, and the doctor about it. His brain is DIFFERENT. And the medicine HELPS him - but it is not a crutch or a cure-all. I refuse to let him be labeled and defined by his ADHD. Because it is such a small part of his sunny, happy, funny wonderful self.

Mama

Just so you know, I have a 7 year old who also hates school. He is, frankly, bored. And I am not one of those My-Child-Is-So-Brilliant-He's-Bored kind of moms, but he just doesn't seem to thrive in a public school classroom. I think he might love Montessori, but... uh... he has three siblings, so on the not made of money front, he'll just have to hate school.

I hope the IEP meeting is as painless as possible for your completely perfect boy. ;)

klcrab

good news indeed. He will be fine, his parents are watching out for him. Schools can only do so much, having engaged parents makes all the difference.

CC

I'm a 20-something year old and have a slight social difficulty. Not enough to be autism but enough to make me awkward in unknown/unexpected situations. I also rely on television to pick up on social cues and rituals, and it's helped me immensely now as an adult because it's not quite as acceptable to make social mistakes past a certain age.

This is a bit embarrassing to type, but there it is.

So the TV naysayers can kiss my lovely rear.

Amy-Hamlet's Mistress

My goodness you're a good mom. See, this is why I fear being a mom. I don't think I'd ever be able to keep all that straight. READING it made me tired. And you've got the tornado running around, too. And the baby. Lord, woman, may I get you a cape?

Laura in Michigan

No, he isn't broken. He is a bright, beautiful boy, who is loved.

Wendy

I fought for 9 long years for someone to even test my child and get an IEP in place. He was held back in second grade, pushed through in 5th - 8th grade, and finally failed freshman year of highschool and had to repeat it in summerschool for someone to listen to me that he had an issue and it wasn't an anger issue. As much as the IEP meetings can sometimes be a pain and repetative, you will be greatful in the end that someone is watching and paying attention instead of just shuffleing him through the system.

MKP

Thanks for this. I think my dad and I both are undiagnosed people with sensory processing issues. My mom and bro both have pretty serious ADD, so I probably have some of that too. But I related to the most to the way Noah leans from movies and TV. Even as an "adult" I see how things play out on TV and think "oh, ok, that's a way that people do things" or I'll hear a quote from a movie I internalized looooong ago and it echoes like a gong.
But I'll need to see some Baby Ike WTF face before I really know how I feel about this

roo

I like hearing about Noah. He just seems like such a bright, intense kid... maybe he reminds me of me. Occasional social weirdness? check. Speech impediment? check.

I never did anything cool like break a board with my foot, though.

Kathleen

Thanks for bothering to link all the triumphs. Noah is such an awesome kid and I am (yes, literally) crying over the awesome because I'm pregnant and sappy. And he's awesome, despite and because of the rough spots along with the triumphs.

Jana

I loved this post and I really enjoy hearing about Noah and how he is growing and changing. You are absolutely right about him not being broken...and don't we all have some things that need "fixing"? Lord knows I do! :)

Good luck at your IEP meetings!

JP

You are amazing. So are your boys. You are so blessed to have each other.

Jess

I'm 24 not married and don't have kids. But when I am, I want to be a mom just like you. (I know that's corny and stupid and cliche). It's true though.

blouson

My 6 year old son also says he does not like school. He is learning well, has friends and so on...he just doesn't like it. I know there rae a few kids out there thta love it, but if you have fun, watrm parents and cool siblings, who would want to go to school? I say he needs to go so he can get a job when he is older to buy a house nad so on...he just tells me that he wants to be unemployed and live at home. Well, till yesterday, he has now decided he wants to be an unemployed vet who lives at home so he can care for his pet cheetah. But, like not work or anything. Ever. I have some sympathy for his position...

blouson

PS. I can spell, I just can't type.

jessie

Some of Noah's behavior is also present in my nephew. He talks in an uninterrupted string of movies/characters/episodes and most of us cannot understand what he is talking about. He does not have any sensory issues, never had any noticable delays, and in his case, he has retreated/retreats into this make-believe world because it's provided an emotional coping mechanism from an environment defined by a completely neglectful, crazy, immature mother. Seems like a coping mechanism for children, whatever the cause.

Cheryl S.

AMEN to he's not broken!!!!!!!! My daughter has anxiety issues and my husband (of all people) will say "there's something WRONG with her" yeah. Sort of. But not really. She just deals with things differently. I wish he could learn that. Thank God you did!

Becky

This is beautiful. Teared up a bit at the end.

Heide

Mine's not neurotypical either, and that last sentence just made my cry, cry, cry. Thank you.

Ali

Hell yes and AMEN to not being broken. I think parenthood is a constant watch-and-wait circle. I mean, it's other great things, too, but sometimes it feels like all we do is watch, wait and revise. Best of luck to you and Noah!

Isabel

What a great post. I can't believe Noah is as grown up as he is. I remember BEFORE he was even in your belly!

Reminding my oldest to not be like Rodrick to his younger brother is the ONLY way we can teach them to get along. All hail "Diary of a Wimpy Kid". (Or rather "Diarrhea of a Wimpy Kid" as it's known at my house.)

Heather

I think you're awesome. My hat is off to you for being such a fabulous advocate for Noah, and for his education. You probably think "I'm his mom. What the hell else would I be?" I have a nephew whom I believe has Dyspraxia and Ataxia along with some other nuerological birth defects caused by a pleothora of complications. His mom doesn't go to bat for him at all. As a result, at 3 years old, he's BARELY walking, hasn't said a word, doesn't even have potty-training on the radar at all, has zero fine motor skills, etc. I wish she would be more like you and do whatever she had to do to make sure he had a good chance at life.

Noah is an amazing little dude. I love reading about him. About all of your family. Thanks for sharing, as always.

H

Heather

... I meant dsypraxia, not dystaxia. Never mind me.

Lucy

Heather - just to say that my son also has dyspraxia - associated conditions are hypermobility and hypertonia. He struggled with walking until he was four (with orthotist boots), couldn't talk until he was four, came out of nappies around the time of his fourth birthday and has really struggled with fine motor skills. And this is with loads of parental help and professional input. Hopefully when your nephew starts pre-school or school, there will be interventions that help.

BeccaLynn

"Because you can't fix something that isn't broken. And my child is not, and never has been, broken."

That sentence hit me. Hard. Noah is a beautiful child, incredibly bright, and amazing. And no child is ever broken. Especially not when he's as amazing as Noah.

Cathy

Great post- Noah is lucky to have you!

Amber

Great post.

I know how it goes. My son has an IEP because he has Aspergers.

Chris

IEP...These made me quit working for the education system!

The kid sounds great, I hope he gets what he needs!

Tam.

Amy, I could have written this post myself today. I could go on and on, but just want to say I really get where you are coming from. Thanks for sharing.

Carol

Oh, you made me squirm. I'm the one filling out the forty-eleven pages and running that IEP meeting and talking about the testing we need to do. And do I know what is going on in the classroom is waaaay more important than my packet of papers? You betcha. Making parents feel "time for the next family, moving on, thanks"? I hope, I pray not. But you have reminded me to keep the focus on the people, and not the procedure....

LuAnn Braley

Commiserating on IEP issues. I always felt we were there as set dressing, so the school could report that the parents were there and agreed to everything, when they really did not want to hear anything we had to say.

tracey just another mom

Nope. Never broken.

Kira

Thanks to all your wonderful in-post links, I've just spent about an hour catching up on Noah and his progress. And I normally never comment on blogs, but I have to say...wow. What an amazing child, with mad props to great parenting and teaching. And the posts helped me catch up on Ezra and Ike too...which makes me think, can I have three boys one day? They're all so precious and totally cool. :-)

jessiee

I've been following you, Amy, since before Ezra was born -- not even sure how I found you -- but I feel like I've been a little bit on this journey with you. My kids are a lot older (nearly 18 and off to college in the fall and 16), but it's been a joy to read you and watch you have these babies and see your life with them develop. I feel (probably like internet friends do) a little kinship with you -- you're a PSUer, and I live very near there, plus there have been other little similarities along the way. I love your sense of humor and your ability to write. This entry is so much a culmination of, I think, where you started (at least where I picked up, when you realized Noah had some issues) and it really is a testament to, dare I say it, the power of words. Your words.
Beautiful post, beautiful kids, beautiful family, beautiful life. Nothing is broken, all is well, all is good. Thank you for letting me look through the window into your life for these last six (!) years ...and hopefully I won't sound too stalkery when I say that if I had to give up the other mommy blogs I follow, I would, as long as I could still read you.
Noah is a gift. And not broken, never was. Only the system is broken.
With best wishes for everything, and happiest of new years...

jessiee

I've been following you, Amy, since before Ezra was born -- not even sure how I found you -- but I feel like I've been a little bit on this journey with you. My kids are a lot older (nearly 18 and off to college in the fall and 16), but it's been a joy to read you and watch you have these babies and see your life with them develop. I feel (probably like internet friends do) a little kinship with you -- you're a PSUer, and I live very near there, plus there have been other little similarities along the way. I love your sense of humor and your ability to write. This entry is so much a culmination of, I think, where you started (at least where I picked up, when you realized Noah had some issues) and it really is a testament to, dare I say it, the power of words. Your words.
Beautiful post, beautiful kids, beautiful family, beautiful life. Nothing is broken, all is well, all is good. Thank you for letting me look through the window into your life for these last six (!) years ...and hopefully I won't sound too stalkery when I say that if I had to give up the other mommy blogs I follow, I would, as long as I could still read you.
Noah is a gift. And not broken, never was. Only the system is broken.
With best wishes for everything, and happiest of new years...

Cath @ Constance Reader

I've been reading your blog since Noah was a baby and I can't tell you how I teared up reading this post. No, he isn't broken and never was.

I am going to take a page from your book the next time someone asks me if my premature baby will ever be "normal."

Springsteen fan

Hey Amy, if it makes you feel any better, my lovely 10 year old boy has been telling me since daycare he "hates" school, and his younger sister parrots him and I know she really digs school but refuses to admit it. Fact is, I didn't "hate" school during the early years of elem school, and it bothers me that they say this, but after 10 years of parental investigation, hovering, empathy, etc., I've determined--my kids are full of crap. It's pretty cool among the kidz today to "hate" school. Don't let it bother you too too much and gird your loins for little bros saying the same thing.

jodifur

Yeah Noah!!!!!

I think kids say they hate school just to get to us.

Wiley

Amen.

Jenny H.

We are currently undergoing testing to see if our eight year old has Asperger's-social and anxiety issues. And it explains SO, SO much about his behaviour. I am completely overwhelmed and don't even really know where to start. I am doing research, talking to other mother's, anything I can think of. It's just so damn much to learn about. I love this post. Especially the last line. It made me cry. I guess in relief because you "get it" too. I know that our children have different issues, but that's exactly how I feel about Aidan.

I'm so happy for Noah! That absolutely rocks. And I'm grateful you blog about your life. It helps. And I'm sorry if I'm not making a whole lotta sense right now. I'm kinda still a mess.

Ladotyk

Amy, you are a wonderful and inspiring mother.

Josefina

Preach it, sister.

susan

I had to reply because of just one sentence you wrote..."my child is not broken".
What a wonderful, special mom you are..and how blessed Noah is to have you.
I'm a mom of 5 - all grown - and one special needs child (man). No IEP's back then - just the insistence that he wasn't right.
Your son is very lucky indeed - keep on fighting.

thatgirlblogs

this post was written FOR ME as an IEP form came home for my daughter today.

It sucks.
I hate it.
I'm dealing...

thanks ;)

Sandra

With 2 boys with similar "problems" it is such a joy to read your stories. I have similar meetings at 2 different schools. My eldest boy ( pdd-nos + adhd) was diagnosed "unfit" for regular school and is attending a school 17 miles away from home. However he does like to go there and is generally happy. My youngest is attending a Jenaplan school, his kindergarten teacher was a blessing,we didn't know then that he has ADHD, but she guided him on his own level and not the level of the rest of the class. So now at 9 he is doing great. School will start again on Monday 9th and yesterday he was already complaining that 2 weeks christmas holidays is to much...:-)
Thnks for your stories though they do comfort me personally as well.

carla

Have 2 of thise IEP meetings next week!! Gotta love testing year!! I currently have 6 on IEP's!!!

Chris

Love that post. He is most certainly not, never was, broken. I've had this talk with my daughter - she's in third grade, and there are a few kids with different needs in her class. I want her to understand, clearly, that they don't have "problems", or that there is nothing "wrong" with them - that we all learn differently, or that some brains are wired differently and need different types of learning.

Tammy

Exactly!! he is not broken and never has been!! I know for my daughter I look at the IEP as a method to keep the school system from tossing her in a corner because educating her is a bit more difficult then some of the other kids. She is not broken... she is beautiful and awesome! Just like Noah!!

Zaitel

That's wonderful to hear just how car Noah has come since the beginning and they awesome parent's they have to make it happen. I agree with others that you shouldn't worry so much when he says 'he hate's school', most kids hate school as they were growing up.

I sure as hell did but once I was done with high school, I miss the structure and socializing it came with it. He may as well :)

Your boys are awesome and never have been "broken". Hope that one day they see just how great you two have been in their lives since I feel words get loss on how you two been towards them and each other.

Zaitel

Wow I just notice I spelled "car" instead of "far" lol wooops. (you knew what I meant right? right? RIGHT?) Also find it adorable he pronounces V as B, btw I'm also like that where I tend to recall and mimic TV shows, commercials but have a hard time remembering something that would be rather important (ex: learning your street names vs remembering the skits in full detail of Robot Chicken)

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