At Least It Wasn't Fruit Stickers
Baby's First Act of Wanton Destruction

Sideways

It's been a tough couple months for Noah. I've been tangled up over what to say or what to post — the fist-pump GO NOAH! entries are so much easier for me to write; going back to the days of routinely wringing out every tiny neurotic emotion via the keyboard isn't something that interests me much. Because even during the tough periods, we're still moving forward. Backwards isn't an option.

But I guess lately we've been moving more sideways. Summers are always tough; the back-to-school transition is even tougher. The same old issues are there: anxiety, rigidity, social and attention/impulse control issues. They just take new shapes and forms and ebb and flow in their frequency. The loop is still there, looping around and around, as my child tries so hard to make sense of a world that just doesn't make sense to him. And a world that increasingly isn't quite sure what to make of him, either. 

(He quit karate, by the way. Yeah. At the beginning of the summer. Just a few weeks after all that earlier drama and my premature pride in coming up with a solution to keep him going. I probably started a dozen blog posts about it and abandoned them all one sentence in. He quit. He doesn't regret it. Ezra quickly lost interest in going too, once Noah stopped. I am disappointed but understand. Okay. Moving on, like always.)

This year is a re-evaluation year at school. It is the final year he can be coded under the catch-all of "developmental delay" on his IEP. And yet we still — STILL! — don't have a definitive diagnosis for him. Sensory Processing Disorder, sure, but try basing an entire treatment plan on something that your insurance company likes to claim doesn't actually exist. ADHD and Asperger's are still out there too, but every doctor and therapist and teacher he's met (and oh my lands, he's met so many) are like, "Sometimes, yes. But sometimes, no. And yet....kinda."

And then we all agree that as long as we're able find ways to meet his unique blend of needs — through school, insurance, etc. — it doesn't really matter what we call it. 

When his teacher told me about the required code change I probably went a little white and made a (super-attractive) noise similar to a dying fish. And she quickly assured me that it was no big deal; they'd simply code him as something else. The school has a new psychologist who is wonderful and we already adore his school OT and his special education teacher and BREATHE, WOMAN. We're not tossing you out of the water to die on the deck of a shipwreck-bound boat. BREATHE. 

***

Last night I decided to go to bed a little early — after brushing my teeth I was greeted by an anxious-looking Noah who wanted to talk about some stuff. The "stuff" ended up being about the last Harry Potter movie, which we finally caved and let him watch a few weeks ago. (Mistake. MISSSTAKE.)

Typical stuff, really, a kid trying to process something scary he'd seen and couldn't let go of, and my endless repeats of "it's not real, it's just pretend" were falling on deaf ears. Or more accurately, on ears that were CONVINCED that Voldemort was like, an actual scientific possibility. He had it all figured out: a combination of bad parenting, a "bad soul" and the prop replica Elder Wand I'd shown him on Amazon were going to result in a real-life Death Eater apocalypse of biblical proportions. 

We talked about real and not real. Fiction and non-fiction. The books vs. film adaptations vs. Lego video game bastardizations. I delved into detailed descriptions of the movie-making process and offered up an explanation for every minuscule detail that was troubling him. "Makeup." "Animation." "CGI." "Computer stuff." "Production assistants standing off-camera with buckets of green-tinted corn syrup." I re-enacted an over-the-top LIGHTS, CAMERA, ACTION, DRAMATIC DEATH SCENE, CUT, PRINT! scenario. And over and over, I assured him that none of it really happened and nobody — NOBODY — actually died or had any plans to leap out of the TV and hurt people.

(It was all very Galaxy Quest, yes. THEY LIIIIED TO YOOOOUUU.)

Finally I pulled up IMDB and showed him photos of the much-alive, non-evil cast, including one of a smiling Ralph Fiennes standing on the red carpet with an arm around Daniel Radcliffe.

"See, they're FRIENDS!" I explained. 

Noah finally seemed satisfied and I sent him off to bed. I mentally congratulated myself on a job well done and went to sleep.

***

By the time I joined everyone in the kitchen this morning, Noah was already crying. Jason was looking at me like, "WHAT DID YOU SAY TO HIM?"

Apparently Noah now thinks that Daniel Radcliffe killed his best friend, Ralph Fiennes, on camera, because he was wearing too much makeup and he didn't recognize him. This also leaves the possibility that the REAL Voldemort is still out there, alive. Because...

*buries head in hands*

***

Sometimes I think I've really got a handle on this, on parenting in general, and on navigating the slightly different topography of Noah's amazing, brilliant little brain.

And sometimes I'm just flopping around wildly, blindly, sideways. 

Comments

Christine

Oh, hon. I have nothing helpful here. But I hope it helps you to write it. And you have a lot of great, great support for Noah out there.

Apryl

We're also in the backtracking mode right now. I had almost 3 months of who the f is this kid I could actually get to enjoy him and his hand holding and cheek kissing ways and we've had a slip back to the old kid ways now. A fight at school (not started by him and not ended by him), a dumb decision made when I wasn't around and I'm trying to stop this train from derailing but dammit my shoes are melting on the tracks!!!

I've often wondered how much slippage is due to a growth spurt. They're brains just go all wonky due to NEW HORMONES and NEW NERVES GROWING and they get overloaded until wait wait oh they might be veering back to kid who is manageable again.

I hope this passes quickly for both of us and we can get back to high five'ng and celebrating forward steps.

Maxine Dangerous

Oh, I wish I knew what to say to help. Noah is so precious. :) p.s. I loved your Galaxy Quest reference. :)

A.G.

Sometimes an old fashioned butt whooping cures a multitude of ills, like nonexistent sensory issues and ADHD; which is pretty much code for spoiled brat. Cue groupies.

jodifur

Oh Amy, I'm so sorry Noah is going through a hard time. Michael is too, and it can be heart wrenching to watch, knowing there isn't always something you can do, or maybe there is but you don't know what it is. Ironically, Michael has just started talking about quitting karate, also.

I'm here if you want to talk.

Gina

I am moved to comment today because this post could've been written about my own son. Noah's struggles sound so much like my Ben's. I wish I could say he'll outgrow it by the time he's 11. Their worries and concerns only change as they move past one issue and on to another. He'll get much better at dealing with things at one level and then, BAM! he's hit with a new challege that completely baffles him and throws him into a tail spin. You're very fortunate to have a school system that acknowleges Noah's challeges. My son is in the best system in our state and yet they don't feel the need to provide him with any guidance or assistance at all- we can't even find any help outside of school-despite Ben's myriad struggles with everyday life at school. We've been trying since he was 3 to find out what's going on in his little head and trying to learn how to be the best parents possible to a child who doesn't exactly accept 'typical' parenting well. We treat for ADHD and anxiety because it works on a very basic level and he sees a psychologist regularly, but we still don't have an official diagnosis of any kind. We're just forever in limbo, wondering what the next hiccup will be and where the next path will take us. It can be very hard to know what to do and I admire you for doing the absolute best you can for Noah. You're doing a great job, Amy!

Hannah

This post made me tear up, both because dear Noah, that mind of his is so complex & challenging, and because of how it feels for you.

Then I read dickish troll comment from "A.G." and my tears quickly dried.

I'm not feeding the trolls because anyone who would post something so incredibly hurtful, dismissive, and insensitive on a personal blog is not going to be convinced by my arguments.

I'll just say this, A.G. - either abide by Wheaton's Law and DON'T BE A DICK, or take your misplaced rage someplace else.

Hi, I'm Natalie.

Oh, boo. Poor guy. Have you shown him not-scary behind-the-scenes videos, like this: http://www.youtube.com/watch?v=hZWLXm8RGI4

Sassy Apple

Amy, you're a good mom. Noah's a good kid.

A.G. commenter, you're a colossal ass-hat.

Karen

Oh A.G. I don't even know where to start. I will pray for you and any children you come into contact with.

Be careful what you wish for. I used to think like you and then my son was handed his diagnosis. My world ended.

But, hey, at least you think you know everything.

Why do you assume we don't spank?

Jenn

Dear A.G
I'd like to cure my hubby's very real ADD that way.
Don't be an Asshat.
Thanks,
A psychology major

Meeshie

You know, even children without sensory issues can have a huge problem with fantasy v reality. After all, what movies and tv really are is a lie. Ya know, the exact thing we tell them is BAD and NOT TO DO. And then we're all 'heyyy watch this'.

Things got better before, Amalah. They will again. We all have faith in Noah and in your unwavering advocacy and love of him.

SLS

Wait, what? Someone commented on this post that your child needs a "butt whooping" ?! Did that really happen? Wow. What a psycho.
I don't have any advice but I can definitely sympathize about how to explain pretend and real and movies and cartoons... It can be really confusing to kids. And I find myself in these unexpected situations where I didn't pre-watch something and suddenly we are in a minefield situation where I can't turn it off but I see that things are going to go horribly wrong.... The latest was The Smurfs. Did not see the problems coming, but there they were!

carly

You are doing what we all strive to do, just keep swimming. Good to know on HP, my "noah" wants to watch the movie like all of his friends have, but we have hesitated- think we will keep waiting.

My takeaway from this- your devotion to navigating his brilliant, amazing brain. That will be what he knows as he continues to mature. Home is his safety net- you are lucky to have each other.

One more thing- poor little AG needs a "butt whooping" and I bet you would have thousand of mums who would gladly show up to dispense one. :)

SarahB

May I just say that it takes some creative brains to come up with all those different scenarios? As one who isn't in charge of comforting him, I have to admire his capacity for thinking this all through.

Hang in there.

Lauren

AG has been making the rounds of the internet. HE SEEMS SUPER FUN.

There are a lot of good making-of features for the HP movies -- email me if you want specific recommendations -- some of which might really help Noah process that, okay, this was a movie, and everyone lived and is friends now. Or they may make it worse GAH WHO KNOWS. Also would it help him to see pictures of MANY people with elder wands? I have those too. Or, oh, man, would he think they were live death eaters?

In conclusion, UGH and you're doing great and this will pass. Get at me if I can help.

Wendy

People, let's not even feed A.G. with responses. My mom used to tell me to just ignore people like A.G., and eventually they'll go away.

Amy - in another year, Asperger's will be a diagnosis of the past... not sure if that's what you were alluding to, but PDD, Asperger's and related others are all going to become Autism Spectrum Disorder in the DSM-V. Huge mistake in my opinion, but it is what it is. There are vast, VAST differences between a high functioning person with Asperger's and a non-verbal person with Autism, and now they will be lumped together. This has all sorts of implications with reimbursable services, etc.

Jenn

Girl, I feel for you. I finally consented to slapping a label on my kid because, well, it's easier to say "Aspergers" than it is to say "constellation of SPD, ADHD, anxiety, and obsessively interested in computers and gadgets and has trouble making friends because other kids his age think he's weird." Also easier to get services. Good luck to ya!

Jenn

Also, AG commenter: shove it. You don't know jackshit.

Jean

OK, my son doesn't have the sensory or ADHD "diagnosis". He has anxiety (which is by the way the catch all for insurance...one of the few things they recognize) and PDD-NOS (somewhere on the spectrum but not really?) which doesn't even exist in any diagnosis anymore thanks to the new DSM-V.

I feel you...summer is tough for children who need structure and back to school tough because of transitions. It makes you want to wrap your child up in your arms and hold him there for the next 20 years (my son is 9...20 years ought to do it). I don't have any advice, but just to say that sideways is ok sometimes :)

Jessica V.

Ugh - the sideways/backtracking stuff, which seems to hit us at the beginning of every school year, and then again in January (post-holiday blues?) is so frustrating. My oldest son has ADHD (via a clinician-validated diagnosis - so there, A.G.) and keeps declaring that he doesn't need therapy any longer, but soooo does! Just when I start to relax a bit and feel secure that the forward progress is sustainable - BLAMMO - derailment!

I guess we "just keep swimming" and will get back on track at some point! Thanks, as always, for sharing your story Amy!

Amy

I know we aren't supposed to feed the troll (A.G., that would be YOU), but the troll picked the wrong Mama to piss off. Do you have a degree, A.G.? Good. Get your butt into graduate school and work on your MA or MEd. Take your Special Education block. Go do 32 hours of a practicum in a regional center that houses kids Kindergarten - Middle School with all kinds of exceptionalities. Then

Amy

(comment continued)

tell me it's not real. Tell me that we are making it up and that those kids just need it beat out of them. You are woefully misinformed, A.G.

Kris

AG. Dude. My autism riddled, sensory processing disordered son gets his ass handed to him on a platter all the time, and it really doesn't help. But thanks for your "intellectual input". So helpful. /endsarcasm

Amy, wishing you hugs and patience. Lots of patience. And pringles.

It will get better. Somehow, it always does. Until then, you're doing fine and so is Noah. You're doing the best you can; and really, that is enough.

jennifer

i am sitting at work trying to cope with an ultrasound this morning that told us baby b stopped growing. until 2 weeks ago I didn't even know baby b existed. we were excited to be pregnant with #3 when they said, "oh my...there are TWO in there" total mind screw. but? pretty cool. OMG, we are going to have 4 kids. now today we are back to 3. which is awesome. and sad. i'm moving sideways too.

Angie

You know how you stand outside the Kindergarten gate waiting for your kid and you have what feels like hundreds of parents standing around you and nearly every day it's your kid who comes out in some sort of high profile way and the teacher asks you to stay behind so she can chat with you and you want to hide underneath a rock? That's me.

I feel you so very much. Just keep pushing for those services, keep asking questions, don't let anyone forget that you are not going to hide under that rock, even though you would really like to. With a margarita. And some cake.

I have 2 boys, two years apart in age, raised exactly the same with the same parents. To be honest, before kids, and out of ignorance, I probably would have said "that child just needs to learn discipline and respect". I have spent 6 years trying to NOT raise a "spoiled brat". I have done what all the books and magazines tell me to do! I have taken the Positive Parenting classes. I have followed the advice of my mother, who did not raise "spoiled brats". And you know what, my older boy is still a child that people like AG would tell me to just give a "butt whooping". Walk a day in our shoes and you would realize how ignorant and hurtful a comment like that is.

Alexia

Just a random observation for the day: AG and the crazy animal handler guy seem to have similar personalities. Let's hope they both realize they should stay away from kids.

Amy, you continue to be one of my mom heroes. I can't offer much more than positive thoughts. In my opinion, I think you're doing an awesome job!

Cheryl

All I can do is offer lots of hugs for you and your beautiful, perfect family. And to say that you and Jason are doing a great job raising your boys.

Elaine

I understand that Noah does have some sort of issue. However, I believe he is going to be just fine purely because he is so loved and accepted by both his parents. Many "normal" kids with everything going for them are being raised in dysfunctional, unloving homes right now and they will enter adulthood with far worse issues than Noah will (I would point to Dooce's 2 poor kids as excellent examples to watch - ahem). I really think the main thing a child needs is to be loved and adored by his or her parents and Noah has that in spades. He's going to be fine.

Rebecca

The thing that pisses me off about idiots like your lovely troll du jour is that they actually think they're saying something new. Like REALLY, no one's eeeeever told parents of ADD/SPD/ASD/XYZ/etc. kids that HEY, he just needs ( insert judgmental bullshit here). Nooope. Not at all.

Go eat a bag of dicks, AG. You're tiresome.

Brittany

I've been a special ed teacher in an inner city neighborhood for a number of years. Many of my students received "butt whoopings." A few time in my classroom as I stood there horrified. I can say with absolute certainty that it does not help a child with ADHD, autism or sensory issues. Quite the opposite.

Amy, it takes so much courage to put yourself out there and share these difficult moments as you've been doing for many years now. Noah is lucky to have a mom who sees through the challenges to the wonderful, unique person underneath.

Stacy

I think we all go sideways at the beginning of a new school year. My mind is boggled by how much my nine year old has seemingly forgotten. My first grader seems to have forgotten how to sound words out. Sideways definitely, not backwards because that just sucks. I'm all for year-round school.

Shawne

***ADHD and Asperger's are still out there too, but every doctor and therapist and teacher he's met (and oh my lands, he's met so many) are like, "Sometimes, yes. But sometimes, no. And yet....kinda."***

And that right there is the ONE thing in common that every child with Aspergers/autism has....yes, no...but kinda. My almost 15 yr old son was diagnosed at age 9....and now, 6yrs later....sometimes yes, sometimes no and yet...kinda. I've had people swear up and down that there is "no way" he has Aspergers (or ADHD, or is on the autism spectrum at all). I usually snort and ask them to please show me their medical degree, psychology degree, special education teachers certification. If you meet ONE child with autism (or ADHD, or SPD or..or....or..etc) then you've met ONE child with it. And eventually, my son will do *something* and all the sudden the person is like, "ooohhh, okay...I see what you mean." If developmental delay isn't a code option for him after this year, there will be something else applicable...my son met the criteria for Autism as well as Language Impairment (semantics) .....and yet, as part of his IEP and accommodations, he receives OT support which includes his sensory processing issues. There are ways to still get the services and support that Noah needs no matter what they use to qualify it.

***And sometimes I'm just flopping around wildly, blindly, sideways***

And such is the life of parents with kiddos with special needs 😉 You got this....you're a fantastic mom and the best advocate out there for Noah!

JenVegas

"And sometimes I'm just flopping around wildly, blindly, sideways." As are we all sometimes, Amy. As are we all. Hang in there!

alice

I never had Noah's specialness but growing up I was terrified of.... well, too many things to mention. Especially from films. I recognise that bit. You're such a lovely parent for doing everything you can think of to help. I stopped telling adults how frightened I was because the explanation it's not real meant nothing to me. My fear was real. And it made me feel silly so I stopped telling them.
Obviously we are not the same people and you seem amazing,I'm trying to remember how I felt as a child and how to explain without it sounding like criticism . As a child I felt better when I was comforted without explanations and then I stated finding ways out on my own, things like realizing the effect of makeup, and only then I'd listen to adults saying the same thing. Only when I felt safe already. And I guess my adults finally found the balance between taking my fears seriously and yet dismissing them as absolutely only fantasies.
I wish I could help but feel sure you'll find what works for you eventually.
All the best.

Jean

Amy one more thing...I think you need a very large glass of wine and some cake

or mexican food and sangria...

basically the food of your choice with some adult beverage of your choice...

We love you and Noah is going to be amazing.

Tam.

Right there with you. There are days when I become overwhelmed with a wonderful feeling that everything is going to be okay. Like really okay. Like someone dumped a bucket of awesome okay over my head. I have not had that feeling in a while.

I know it will come back though. It always does.

So I'm sending you a bucket. A big bucket of awesome okay.... with cookies on the side. :)

Amy

The new DSMV may actually be useful, though most of us in the psych field are still being trained, and the changes aren't actually going into effect until fall 2014. It is my understanding that kids like Noah are going to be largely diagnosed with Autism Spectrum Disorder, which covers the entire range of issues you have described and then some. I am sure the people who work with Noah everyday will continue to assure he has services, so while I completely understand your frustration it is my understanding that the DSM changes are not going to keep a child like Noah from getting what he needs. Hang in there. You are a fantastic advocate for your son.

Amy

You may have already done this, or have decided it won't work, but if Noah is still worried about Voldemort vs. Ralph Fiennes vs. everyone, try searching on Youtube for "Deathly Hallows out-takes" and see if you can find one where they literally break from "pretend" to "real". It helped some of my students in the past. Good luck, as (almost) everyone has said already, you're doing a fantastic job.

Lisa

xoxoxoxox.

You are wonderful.

Becca

<3 Give me a room full of 7th graders any day, but this parenting shit is enough to make me go completely fetal in the corner, too. <3 Hang in there.

Casey

I've had a boyfriend tell me "they make movies for people like you" because I get SO caught up in it, it is real EVERY TIME. Like, I know that Indiana Jones makes it out without being crushed by the boulder, but I worry every time. And Jurassic Park?? When those dinos jumped up on those aluminum kitchen counters they SLIPPED. Just like they really DID because they are REAL.

I'm 52 years old, BTW.

Which, no help here really but I sort of can understand where Noah is coming from. I was also going to suggest a behind-the-scenes youtube somethingorother, but like the poster who first suggested it, maybe that would be MORE worser.

Good luck Mommy. All you can do is keep walking.

Jennifer

Have you ever tested Noah for Fragile X Syndrome? My son was first diagnosed with PDD-NOS but our psychiatrist also did some bloodwork on him and discovered that he's a premutation for Fragile X. Some of the symptoms are very similar to autism... but different and not really :D Just a thought.....

Kate

The only thing that worked for me as a kid (okay, the only thing that still works for me) is to focus on the lessons of the movie. Bad guys do exist in reality, and trying to work out why they do, and what do we do when they start hurting people, is an important function of fantasy. Reality is a scary place where friends do kill each other. Especially in the current context of 9/11 anniversary, Syria, etc... Just overhearing the news might mix up things in his head, they mix things up in my head too. IMHO, the answer isn't to focus on "Harry Potter isn't real" but that the bad guys do not win. That love and friendship and loyalty will overcome them. That he is safe because his parents will protect him, there is a military to protect from larger threats, etc. Maybe focus on the parts of Harry Potter that are a fantasy (like we don't have flying cars, look, our cars don't fly!) but friendship and bad people are real (they can't brainwash, though!)

jill (mrschaos)

I know this doesn't help at all, but I just want to thank you for sharing this. I know it's not easy...but it helps when I'm just not sure how to help my kid (who has different struggles, but still.)

Thank you. A million times, thank you.

Maggie

Amy, Thanks for sharing this story and all your other stories about your family. This post made me think about Sam, the little boy for whom I nanny. He often has the weight of the world on his little shoulders, and opportunities to reassure him have a real and immediate impact on his behavior, demeanor and ability to sleep.

A few months ago, Sam came to me in the middle of the afternoon with a day-mare scenario: StormTroopers were going to come to our house (Definitely, absolutely, they were basically already en route) and were going to make the family move, meaning they'd have to live in a cardboard box.

What worked for him was a story about who StormTroopers are. Just like you talked about movie effects, I told Sam that StormTrooper is a job that some Dads have, just like his Dad is a lawyer and my Dad travels on airplanes. StormTroopers are just Dads who wake up and put on a costume instead of a suit, and go to work. We talked about what they did before they went to work - they ate chocolate chip pancakes for breakfast, had a cup of coffee even though Mom doesn't like it, and got in their little black car to drive to work at the movie studio.

Then we talked about what Stormtrooper Dads do after work - they come home in time for dinner, and help with homework. And it turns out, Stormtrooper dads love to tuck their sons into bed at night.

Anyway, long comment with hopefully a tip - can you make Voldemort a job? Maybe tell a story about Ralph or Daniel and what they do every day?

Best of luck, and thanks for your constant good humor. Much appreciated by all of us who love our goobers in our own way :)

- M

shannon

sigh I get it I really do!

Arnebya

I'm so sideways there's a horrible pain in my misaligned back. I think it's a trait many of us share, but we keep going, we keep trying, we keep fucking it all up, then trying something different. That's all I got and figure none of us has any more, no magic, no miracles.

I do wish, though, that things were different as far as a diagnosis for Noah because being told something doesn't exist is bullshit. Your child exists and the way his brain works exists. IT IS REAL. Choir preaching, I know.

I know.

Wally Hartshorn

Have you ever taken Noah to see a play? We recently took our 8-year-old son to see "Peter Pan" and he loved it!

I'm not talking about a Broadway, big budget extravaganza. I'm talking about community theater, where the special effects are simple enough that Noah can tell that Peter is being hoisted by wires, and that the dog acting as the children's nurse is just an actor in a suit, and that Tinkerbell is just a laser dot on the wall.

That might help him understand the difference between real and pretend, especially when the cast comes out afterwards to take their bows.

Liz

I was going to suggest showing him a behind the scenes "making of" of harry potter movies? Bonus feature on the DVDs maybe? the actors sitting around talking, showing the "Cut!" scenes. Interviews with the director, or even video of JK Rowling explaining her characters? you would have to vet it first, of course.

SS+1

Amy, after solo parenting my son for the past 7.5 years, I'm convinced there's no amount of training to preparation one could get to be an effective, efficient, spot on perfect parent. If such a thing ACTUALLY existed, I'd be the first in line to punch them in the face....just because. Although I'm a complete stranger, you guys are doing a FANTASTIC job with you boys. Thanks for sharing.

Lisa

I don't usually comment but Noah sounds like my son. he's 12 now. it "could" be this but he doesn't quite fit the dx. I don't care what it is as long as he has help

Lindsey

Wish I could give you hugs and chocolate and wine (and that I knew you so that it wouldn't be creepy to give you hugs and chocolate and wine).

Betttina

Have you seen these happy pictures from the Harry Potter set? Might help Noah see Voldemort in a dfferent light.
http://www.buzzfeed.com/lyapalater/images-that-will-change-your-perception-of-harry-potter

jill

When my oldest son was skitzing about scary cowboy movies (which he loved but hated, because people died), it took another kid to explain to him that there weren't any bullets in the guns. I had talked about actors, and guns with fake bullets, etc... but it took another, older child to explain it in a way that made sense to him. Just an idea.

grandma

Some things I learned in parenting a brilliant Aspberger's kid:
1. You can't fix everything. Over the top reactions occur and you just have to move on.
2. The child will never be normal, but will always be special.
3. His rigidity has become part of his character. He cannot lie, must follow the rules and is the most honest, gentle person I know.
4. There is a place for him. My guy is an amazing mathematician and a research scientist who will never interact with the world in a way I will completely understand. But his contributions could impact all of mankind.
I have diligently monitored and where possible, selected his teachers. In only one case did he have a teacher who I felt did more damage than good. I got to know the teachers on a social level whenever possible -- this gave me access to gossip about the rest of the faculty. Devious, I know, but it works.
Cherish him, I'm sure the world needs him.

Cheryl S.

So sorry Noah's having a hard time. I wish we could just wish our kids' problems away.

We're backsliding at my house too. For Jess (who just turned 8) we seem to be in an anxiety/panic attack/depression cycle. My poor, sweet baby is miserable. She's had about 3 good YEARS and now it's back. Off to the psychologist (again).

It breaks my heart to read about all these wonderful, smart, funny kids who have to suffer because their brains are a little different.

HUGS to everyone.

Beth

And sometimes, maybe even often, sideways precedes big steps forward. Sometimes I have to remember that all kids, special needs/aspergers-ish/maybe ADHD/oh yeah definitely sensory stuff/loner personality (which could serve as an actual diagnosis for my kiddo, but insurance doesn't recognize the code)kids and "typical" kids have sideways spells...

I think it's just that we fear so much them never going forward again. But they do. Really.

Beth

And sometimes, maybe even often, sideways precedes big steps forward. Sometimes I have to remember that all kids, special needs/aspergers-ish/maybe ADHD/oh yeah definitely sensory stuff/loner personality (which could serve as an actual diagnosis for my kiddo, but insurance doesn't recognize the code)kids and "typical" kids have sideways spells...

I think it's just that we fear so much them never going forward again. But they do. Really.

Beth

And sometimes, maybe even often, sideways precedes big steps forward. Sometimes I have to remember that all kids, special needs/aspergers-ish/maybe ADHD/oh yeah definitely sensory stuff/loner personality (which could serve as an actual diagnosis for my kiddo, but insurance doesn't recognize the code)kids and "typical" kids have sideways spells...

I think it's just that we fear so much them never going forward again. But they do. Really.

Annie

Do you think putting him a theater class could help? It would be a structured environment to learn what grown-ups mean when they say a movie isn't real. Even if he hates playing pretend going through the physical motions of "acting" with other kids he knows outside of the theater class may help him understand what movies and TV shows are all about.

liz

I remember being his age and going to see the comedy "Murder By Death" with my sister and being terrified out of my mind by the moose head. THE MOOSE HEAD. For YEARS I could not enter a room with a moose head.

Scariest movie EVAH I thought, until I saw it again at age 26 and laughed my butt off for the whole film.

My point being, I'm pretty sure Noah's creativity is going to serve him well, and that I hope this too shall pass.

Erika

After years of aversions to groups or structured activities, my 7 year old son FINALLY asked to join a team and we enjoyed watching him play flag football last spring! I was like "oh he just needed to outgrow it" like Sundry's kid!

Then. He quit in the middle of the final game, once he realized they would lose and not progress any further in the playoffs. We were mortified and not sure how to handle it. I thought for sure he'd regret it, but I think he's pretty satisfied that HE didn't lose (although his team, of which he was a leader and an elder member) did. Even now...it is still one of the most disappointig things I've experienced as a parent.

We geared up to try tackle football this fall and after some apprehension about the equipment, he totally balked one minute after practice began. It feels like we've failed...he won't get a childhood do-over, and things will never be more low stakes than they are now...but we certainly weren't going to force him (I'd like to see someone try). Now our younger son wouldn't even give soccer a chance. Kids, man.

Brandi

Hi Amy, I don't comment much, but I do read your blog all the time and I've gone back and read from the beginning and I just wanted to chime in with some love and support and internet hugs for you and Noah. I don't have kids yet, but reading your blog makes me want them even more because even when you write about the challenges of being a parent I can feel the immense love you have for your kids and I just can't imagine not having that experience or knowing the people that my kids would be. So I guess that's a really long way of saying that you're an amazing mom. So amazing that you even make the hard parts sound like something that I can handle instead of running away from screaming. So just keep trying your best, and believing in Noah and loving him to pieces like I know you do and someday the sideways will turn rightways again. SO MUCH LOVE to you and him both! :)

Jamie

Do you think it would help if Noah practiced some movie tricks on his own (with your help, of course). It might demystify the technical aspects at least. With your video camera and something simple like iMovie, you could make your own little special effect movies, and since he'd be in on the process, he might enjoy it and understand a bit more.

Things I did while playing with my parents video camera:

Give the dog peanut butter and film it with its lips moving. Lay an audio track (singing, a monologue) over top.

Stop/start filming. Make an object move across a surface, seemingly on its own, by starting the camera, stopping the camera, moving the object, and starting again. You can do this with people too. Maybe film Noah yelling "Accio Ezra!" and Ezra seems to slide magically on the floor toward him. or, just pops out of nowhere near him (film noah, stop camera with noah standing in the same position, Ezra runs into frame, start camera again -- Poof! Ezra!)

I am sure teh internet has other at home special effects you could try.

Also, maybe some friends/family act in community theater? He could go see them in a show and they talk about acting?


Amber P.

All I can say, is thank you for deciding to post this. I think we all often feel that we're moving in not quite the supposedly "right" direction with our kids at times, whether they have a formal diagnosis or are just a little different or even if they're "typical."
Parenting is complex and challenging and exhausting, and it's SO easy to look around and assume that it isn't so challenging or so complex or so exhausting for everyone else (maybe that's just me?). Your blog remains my favorite because I can always see my own kids in your posts and my feelings about them and our lives mirrored in your words and stories....that your children are beautiful and wonderful and challenging and confusing and that you are trying sooooo hard help them be the best beautiful and wonderful and challenging and confusing little people they can be. And sometimes things are awesome and sometimes they are overwhelming. Thank you for your honesty and for letting us all feel less alone in this crazy parenting thing.

Allisone

Oof.
I wouldn't have seen that "Daniel Radcliffe killed his best friend" thing coming either.

Stacy

I am constantly reminded that development is not a linear thing. Kids make progress in one area, seem to backslide in another and ultimately DO get new and stronger skills. But the whole package takes time and patience to get on line. That is childhood. Hang in there and know we are pulling for you and Noah.

Kira

I didn't read alla the comments, so sorry if this has already been said.
I just wanted to say that with my quirky, mildly OCD firstborn, we TOTALLY went through the fixation on a scary idea thing. Yeah, usually from a movie, when will we learn, blah blah.
What I learned to say to him was not that it wasn't true, but that it was. It didn't really happen, but watching it makes people happy because it's TRUE that bad people exist, and it's TRUE that goodness and braveness and love always always always wins. And that would become our verbal response to the scaries. "Mom, what if that bad guy breaks OUR window?"
"That would be a BAD THING TO DO. What always wins?"
"Goodness?"
"And?"
"Braveness?"
"AND?!"
"LOVE!"
I think just having the response to cycle through helped, but I hope the concept helped too.
Now he's 18, and I wish like crazy that I could toss him a little of that fear he had then. Gawd. He's making me insane.

Meagan

Another tool for the use at your own peril kit: monster/ Voldemort spray (just a spray bottle). This will either empower him or make it too real. As a separate suggestion, I highly reccomend checking out the Autism Discussion Page on Facebook. The topic this week is going to be executive functioning skills.

GTR

Yes. Executive function, or something like that. My son is 5, my more NT daughter is 3. As I watch her play intense "pretend" games, I realize with a shock that he's rare done that, and that "pretend/making things up" is really hard for him to grasp. I think it's hard for us to grasp that with more NT brains. We've limited media with my son, a bit worried what will happen when he gets exposed to more intense "real" video. Good luck!!

Gina

I honestly think it is a phase for EVERY kid at around this age. My daughter is 8 and though she is a tomboy, she is very sensitive. She has bad dreams too, that can seem irrational because they are dreams. And it's harder for all kids to separate dreams from reality. My just turned 4 year old is a girly princess, but tough as nails. Go figure!

Hairy Farmer Family

*de-lurks* Hello!

"Sometimes, yes. But sometimes, no. And yet....kinda." <--- Had me nodding so emphatically I have earring damage. Harry struggles with the same issues as Noah, and a sufficiently nuanced, authoritative diagnosis is an elusive beastie, sure enough. I have found myself staring endlessly at the SpLD Venn diagrams, and wondering which segment Harry will eventually find himself officially handed. It looks increasingly likely to be a SMALL, peculiar-shaped segment. I'm terming it 'DCD with a dollop of ASD' until the clipboards finally unfurrow their brows over him and give him some official letters to his name. My interest has become almost purely academic - what's in a name? - save that I will then have to take that information into battle for the extra help he needs and deserves.

Annie & Jamie make a good point above re: drama/theatre. Harry was struggling terribly with the real/not real concept, and while he still can't tolerate even the gentlest level of peril, the after-school theatre group has helped enormously with his mental grasp of People Pretending Things For Fun. His natural metier remains documentaries, natch, but he now understands what an actor _does_, at least.

I'm so sorry your summer break was tough for Noah (my best and kindest virtual empathy waves: heading your way); we've had a similar time since term started. The usual nuclear fireball of exhaustion, stress, and EVERYONE IS ON A HIGHER READING LEVEL THAN ME AND I'M THE WORST READER IN THE WORLD AND I JUST CAN'T *DO* IT, MUMMY! Lately, I have emerged as someone who Negotiates With Miniature Terrorists To Avert Crisis - which surprises me, but the path through this almighty sodding jungle is not straightforward, and finding the right path for Harry, for Noah - requires devious and constant re-routing. Which is why a sideways route for a while is Just Fine, lovey. Really. Thinner vegetation here! More sunlight! As you say, stopping isn't an option. Keep on keeping on. It's so much easier to say bracing encouragey-type things to someone else than to Actually Perform Positive Thinking, though. I have noticed this, as one does. But if you try: I promise I will too!

And you have emotionally prepared the ground for me (I am grateful. I think.) when Harry tells me, as he eventually must, that he never wants to see another horse in his life, thank you, and I can take this therapeutic riding and _shove it_.

Oh well. Hurrah for Breathing Fish!

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