The Blessed Holy Tradition of Mall Santa
Amalah + Exercise = ErrorDoesNotCompute

Downs & Ups

UP:

Photo (93)

He's a brown belt now. Which (if you aren't up with the karate-belt-color progression, and don't worry, I only know because there's a cheat sheet on like, every wall of the dojo) is the highest belt for his current age group. He's determined to make it all the way to black belt.

(Please note the Ezra Legbomb in the above picture. Sibling belt tests are exhaustifying, y'all.)

DOWN:

He had a panic attack when Jason emptied a new box of Cheerios into a space-saving plastic container. He screamed and cried and hurled his body around. It wasn't right, normal, regular. A tiny deviation from the constantly running script in his head and the world crashed down around him. 

I wrapped him up in blankets and talked about the time Baby Ike got into the Cheerios and dumped the entire container upside down the floor, which was just so silly, remember? Then I changed the subject completely. It's not like Noah could explain what was wrong anyway, and the last time I pressed him for answers in a situation like that he started talking about hating his "wrong brain" and my heart near ripped in two.

The next day, he had a mini-meltdown at school over a social studies lesson. Everyone was taught how to say hello in another language, and given a badge identifying what country and language they "were." Then they were supposed to mill around the room and practice saying hello to each other.

Noah was Eygpt. No, Noah was NOT Eygpt. The sea of everyone pretending to be from somewhere else, saying different words, the idea that "hello" is not always "hello" was all too much and the rigidity amped up and gaaaaaaahh that was the end of that. 

I picked him up from school and drove him to his weekly therapy appointment. They moved marbles from their Regular Bowl to a Different Bowl. Then they put them into a box of tissues, which was just so silly, Mommy. Later, he got a bag of Doritos as a reward for saying the word "merci."

UP:

When school started this year, Noah insisted that he did not know how to read and would refuse to even try. Every unfamiliar word was an unbelievable source of stress for him, for he refused to sound anything out because he might get it wrong. This perfectionism crossed over into writing and...well, lots of things. 

He's reading above his expected grade level now. He loves to write and tell stories and is no longer concerned if his spelling is perfect. Math is a strong suit, and his behavior at school (the occasional rigidity tussle aside) has been impeccable. On Monday nights, after dinner, he sits down with that week's homework packet (due on Fridays, go at your own pace)...and does the entire thing, cover to cover. 

On other nights we have to invent homework for him. Illustrated book reports are a popular choice, or math problems, or seeing who can list the most adjectives or nouns.

He reads bedtime stories to his brothers; he does fractions over breakfast with his pancake. I still have to remind myself to pick my jaw off the floor, sometimes. And to let go of my own worst fears and anxieties. Like he has, and continues to do. 

ADHD and dyslexia are now off the table, diagnostically. He is not on the Spectrum. All signs are pointing to a very smart, very quirky, visual-spatial learner who is slowly outgrowing a myriad of sensory issues and developing at his own zig-zaggy pace. 

The Downs still happen. For anyone who reads this blog because they see their own child echoed in the archives, yes. The Downs can still be scary, and frustrating, and make me feel like I'm doing something wrong, or at least not right enough. Noah is not a light switch, who will one day just flip completely to "easy" or "typical." His wiring is so much more complex than that, like a electrician's lighting board at a giant stadium concert.  

Photo (92)

But the Ups happen more often now, and are higher and better than ever before, and the stadium is full of cheers and applause from every seat in the house.

Because we all know what's coming next is going to be awesome. 

Comments

Caitlin

Just got all teary. Very happy for Noah! Love the idea of the stadium.

Call Me Jo

What an inspirational story!

Lynn

And we'll be right here, cheering along in the stadium. Go Noah! You are an awesome little kid.

Amelia Sprout

Thanks. So much. You are helping me by sharing. It means the world to me.

jodifur

I love this post. Yeah you! Yeah Noah!

Courtney

He is such an amazing and strong little boy!

Arnebya

Ups, downs, twists, turns, setbacks, forward lurches, whatever. He has you to help him along the way (without even knowing he's heling you in turn). I am cheering for both him and you (it is really bright in this stadium.)

Elizabeth

I'm a very lurky lurker, and very rarely comment, even though I've been reading since 2005 (I think?). But when I read this "ADHD and dyslexia are now off the table, diagnostically. He is not on the Spectrum." I cried with happiness for you guys. Because I've been scared/worried for you all for a long time. I love how you posted the ups and the downs, because there are still downs of course, but this just so wonderful.

mjb

I see some sensory processing type stuff in my toddler, but I have to keep reminding myself that he's just a toddler, and even if we have to work him through a few things in his own way, it's most likely that he's just developing in his own way, too.

Cara

This makes my heart sing and puts a smile on my face. Way to go Noah!

Claire

He is just beautiful. Ups and downs are something I see a lot in my job and when the ups outweigh the downs, well, it's amazing! Merry Christmas to you all x

Kate

Ok, the Downs are sad and a little heart-achy, but the Ups are so amazing! Like Amazing! Way to go, little man! And you. Way to go, You.

SarahB

Big smiles here too. Go, Noah!

Lisa @ Lisa the Vegetarian

It is so amazing to read about the leaps and bounds of progress he's made over the years. Go Noah!

Brigid Keely

My 3yo flipped out the other day because there was CEREAL in the giant plastic container that used to hold pretzels and those were NOT pretzels and that is a container for PRETZELS what the hell is this world even coming to nothing is solid anymore ARGLE BLARGLE BLARGLE BLOOOOOOOO. This kind of behavior happens rarely, yet is predictable, if that makes sense. I love hearing accounts from other parents, it makes life feel a lot more stable. I'm so so glad Noah is doing better over all. :D

Brooks

Yay for Noah, yay for you. Something new every day, in every way.

MJ

Cheers and applause from this part of the stadium.

Brandi

My son is the same age as Noah, and I started reading your blog when he was 2 and diagnosed with a severe speech delay. He received therapy for 6 months and then was ahead. The improved speech didn't end the quirks. I find myself saying "that is just Ryan." He rigidly follows school rules but not at home. He is a worrier. He is bright. At our last teacher conference they said kids like him need extra support, just like kids with a learning delay. There is so much going on in his head...but I've seen improvements. When we remember to use the behavior chart he loves it. I've seen him open up to new foods because I stopped talking about it. I stopped forcing. Sometimes the only way I know how to describe it is his that his social age isn't caught up to his smarty pants brain age :) When I volunteer in his classroom I love to watch him. He is a different kid there. But I feel he is holding it in and a lot of times his behavior explodes at home. He is so worried about getting into trouble at school. Most importantly he has friends at school and likes to go. He is a good friend. He asks for math problems on his white board. His dad and grandpa are engineers...they get him:)

Superfantastic

I can't overstate how important the step of overcoming perfectionism is for kids. I get kids in middle school who haven't and it's paralyzing for them, especially since my kids are so far behind in reading and spelling to begin with. So hooray for Noah! And for Noah's teacher, who must be so incredibly pleased.

Carie

Amy,
I rarely comment but this post made me ridiculously happy for Noah. He's such a special boy and I love seeing his progress. Have you heard of engineering for kids? Maybe he would enjoy something like that and would be a good challenge.

Hannah

Goodness, it's dusty in here... *sniff*

I've been reading your blog since before Ezra was born. I'm so so happy for Noah that he's doing better.

Therese

Thanks so much for being so open and posting Noah's (and your) story. My son is three and we are currently working with him on some sensory issues. They are mild in the grand scheme of things but it is still frustrating and a bit scary as a parent when everything isn't just "normal" (whatever that actually is). It's nice to hear that the ups and downs continue and ebb and flow but in the end everything is okay!

Apryl

I've got a 9 year old who is ADHD dx'd at 4 and our ups and downs are still there but definatly fewer and far between (thank heavens right?). It's amazing how they can grow to accomodate their particular issues and how we can grow to not freak the F out. Mine sat through a performance of the Nutcracker last night, 2 hours and it started at 7p. Sure we had some minor issues with about 15 min to go but still I was amazed and am still when I think about it.

Congrats to Noah for trying his hardest and I know it's hard for him. Congrats to his parents for the patience to keep trying and keep pushing him onward and upward.

shokufeh

As someone who has a son a few months younger than Noah, and has been reading your blog since before either of us were pregnant, I've loved watching Noah grow up. And it makes me all happy teary that it is indeed more up for you all these days.

Suzy Q

I am as proud of this kid as if he were my own. He is doing SO WELL!

rebecca

My 6 year old boy has somewhat regular and similar meltdowns. This morning his paper cut snowflakes weren't right (nevermind that every snowflake is different, he doesn't want to hear that crap) and earlier this week, the seam on his pants was....there. Noah gives me hope.

Kari

Oh we sure WILL be cheering for Noah! I don't have kids, but I take such encouragement from reading about Noah's (and you and Jason's) journey. I read about his ups and downs and his victories and I'M encouraged to fight my own anxieties and challenges. Yes, your sweet kiddo is teaching this old chick some life lessons. Go Noah!

Danell

You are such an incredible mom. I so admire you-your patience, your grace, your kindness.

Tara

This is just what I needed to read today, after a day of conference calls to understand the results of a neuro-developmental evaluation and making appointments with speech therapists. Our almost 3yo sounds SO MUCH like Noah in the archives and it's great to hear about Noah's ups and to know that a diagnosis at 3 isn't a life sentence. Cheering for Noah from the sidelines!

Christine

This is just awesome. Thank you for being a bright spot on the internet today. :D

ellen

I love your posts about Noah recently. Such a dude. And my six year old? Totally perfectionistic and looney about anything different in the routine. Being six is just ridiculous sometimes.

Lisa

Cheering from out here in the Internets, reading all your posts, feeling such borrowed pride in your boy.

Christy

I love love love hearing all this great stuff about Noah. I am one of those people who can see my son when I read old posts. In fact the only reason I found your blog was because you used to write for The Stir. It makes me so happy to see Noah do so well. And it gives me hope. It seems like right now we're in the "1 step forward 2 steps back" phase of things. Just when I think things are going great, BAM! A phone call from OT about "concerning behaviors", or he starts chewing on his glasses again, or he loses words he used to have. I hope our success story looks as good as Noah's someday. :)

Julie

The wisdom and perspective you are able to share is amazing and so very needed. Thank you for writing about your family, it helps me to be better at mine.

ashley

NOAH!!

You are so powerful. Even when you might think you've lost it, you still have it, grrrll power!

TallulahEulallie

WooHoo, Noah! A brown belt? Go on wit' yo bad self! And take a bow your ownself, Amy. Your courage and resilience inspire me! My brother-in-law, Jimmy, is a 32 year-old version of Noah; since his mom died, we've become his advocates. Like Noah, he has his ups and downs, and I'm learning to roll with the changes. Although he has never received a definitive diagnosis, he has done extensive research in an effort to better understand himself. He recently told us that he suspects that he's an Aspie, and wants us to help him find a therapist with experience in this area who can help him deal with his "Jimmy-ness". He was very positive and upbeat, until he read that the Connecticut school shooter had Asperger's. Dear God, you wouldn't have wanted to be at our house during THAT conversation. I'm helpless in the face of his anguish. I wish I knew the right words to ease his pain. I feel as if I've failed him somehow. And so I return to your blog, again and again, looking for my daily dose of courage.

Laurie

I'm in tears. Thank you.

Rachel

He's also old enough that you should really consider if you have the right to write about his tantrums, melt-downs and other challenges. Yes he is wonderful and yes, I am sure this blog is useful to other parents. Yes, everything seems upbeat.

On the other hand, it's his life, his struggles and he has not --and cannot-- given you his consent for you to share all this with his future classmates, friends and everyone who will ever know him--which is what you are effectively doing. Please, please reconsider.

Corinne

I actually love to read about Noah, one, because he's awesome, and two, because he reminds me so much of me. His downs were worse than I ever got (that I remember, I guess I'm not sure what I was like as a 3 year old). I remember having a complete meltdown when my mom threw away my bathmat and got a new one (the old one had gotten kind of gross). I couldn't explain why at the time, but I remember vividly that it was utterly crushing. I took half an hour to put on shoes and socks every day because they felt wrong (I'm still picky about my socks, but a little less so). But I got less rigid as I got older and quirks are just quirks now.

Erin

Thank you so much for this. My son is not quite 3 and has only been evaluated for speech delay (minor speech delay they say) but also just seems quirky, definitely visual-spatial, so puzzling at times and so difficult at times but so funny and creative at others! I am convinced he doesn't fit on the spectrum or any other disorder that I've read about but certainly is not "easy" or "typical" either. I love to hear that there can be progress for our quirky kids. :)

caitlyn (ladyphlogiston)

Have you tried him on Khan Academy? It sounds like he's old enough, and they offer lots of practice math problems. Might be worth poking around the science and programming areas too, in case there's something he'd be up for.

Lisa

I just wandered over here today. Really enjoyed reading this post.

These two sentences caught my eye:
"Every unfamiliar word was an unbelievable source of stress for him, for he refused to sound anything out because he might get it wrong. "
" The Downs can still be scary, and frustrating, and make me feel like I'm doing something wrong, or at least not right enough."

Such universal feelings. I wonder if this something he might take comfort in, knowing that you also fear doing important things wrong.

Amanda

Beautiful post. I love the way you can paint such a big picture with just the smallest details, Amy. Congrats to Noah. He (and you and the rest of your family!) have worked hard!

Bev

My absolutely typical, no diagnosis ever, 8 year old boy absolutely lost it one day because the corner of his pop tart was broken. All the way to school and home again afterward, he be,moaned the broken pop tart. Had you not had the early issues, you might still have had the bewildering Cheerios incident! Kids are just weird on certain days for no certain reasons. Now my kid thinks we are crazy awhen we tell him about the incident and laugh when he eats a pop tart (he is 25!).

Cristin

Thanks for sharing your progress. It's so nice to know I'm not the only one dealing with a quirky kid who's not on the spectrum or ADHD, but his own special brand. Noah is awesome and has awesome parents. Merry Christmas!

The comments to this entry are closed.