BlogHer, Part Two
Dogged Determination

Not Exactly Fearless Blogging

About 10 minutes or so into the Blogging Autism panel at BlogHer, the table surface started to get all fuzzy and my eyeballs felt hot. "Shit, I'm not gonna make it," I mumbled to Christina, as we'd already briefly debated the odds of getting through the session without crying.

Nothing had even been SAID yet, beyond introductions to the panelists and the theme for the discussion, and yet there I was, hiding my reddening face behind my conference schedule as the weight of the previous days with Noah decided to drop from the ceiling and land squarely on my chest.

"It's just been a really bad week," I whispered as my neighbors patted my back and scrambled for tissues, probably wondering what the HELL had managed to happen in that 10-minute timespan, because I'd all but floated in like, WHAT UP BITCHES, LET ME ENTERTAIN YOU WITH ANECDOTES AND EXAGGERATED HAND GESTURES. ALSO, MY SHOES ARE CUTE, NO?

Just a few days before, Noah had a panic attack. A really, really bad one. And while we've certainly dealt with anxiety and freak-outs in the past, this was...different. Worse. Especially because goddammit, wasn't he doing so much BETTER, a few weeks ago? We're supposed to be moving forward, onward, upward. So why are we rewinding? 

And so I sat there, trying to squeeze the image of Noah's furious balled-up little fist swinging at (and making contact with) Jason's face out of my brain, along with the bewildered, terrified face he had immediately after, his wide eyes desperate with guilt and fear over that involuntary fight-or-flight gesture. A few minutes later, he'd kick me in the chest while screaming NO HANDS, NO HANDS! at the top of his lungs. 

A half hour later, his hands would still be shaking, his breathing ragged.

(I wrote a little bit about this night over at The Stir, but for the sake of completeness here: This was all over a Star Wars DVD. One of his little friends had told him The Phantom Menace was kind of scary. We assured him it really wasn't. By the time Jason pulled the DVD out of the Netflix sleeve, Noah's anxiety amped up to the point of no return, as if the mere presence of the movie in our house would bring about a Ring-like curse of death in seven days, or cause Jar-Jar Binks to climb out of the TV and annoy the living shit out of us for all of eternity.)

(Fucking Jar-Jar, man.)

I sat there, as the full realization and possible implications of what another violent panic attack could mean for Noah hit me for the first time, now that we've decided to fully cast our lot in with the public school, where a child who hits or breaks things can be quickly yanked from the inclusion track and tossed in the self-contained "intensive needs" unit. Would this happen again? Will this be a "thing?" A new thing or just a new symptom of his other things? Will he need medication? I don't want to put him on medication. I don't want that attack to ever happen again. I don't want him to be scared. I want him to feel safe. He was doing so well. I know these things are never linear but I WANT LINEAR. BECAUSE HE WAS DOING SO WELL. 

If I hadn't been so utterly mortified to be crying in the first place, I probably would have punctuated my internal monologue with an "it's not FAIR" fist bump to the the table. 

The discussion, by this point, had turned to the myths of autism -- namely, the uber-negative portrayal we all know from the media, that a Spectrum or sensory diagnosis dooms your child and family to a life sentence of misery, because it's just so "awful" and "sad" to be forever tied to a child who cannot love or laugh or live any meaningful life -- you know, because they're too busy hand-flapping in the corner and calculating out Pi to the 3.000th decimal, while you change their adult diapers and spoon-feed them pudding. 

Everyone in the room laughed at the suggestion of the "misery." 

And so did I. 

Photo (53) 

Loud, and long, and clear.

Photo (52)  



You're a really...amazing mother. I almost always cry whenever I read about you and Noah. Because your love for him is so obvious and beautiful. I volunteer with kids that...never had the chance to survive in a world where their parents would do anything for their safety and well-being. So when I read your posts, I am reminded of all the good that is in the world. And I am thankful that all the little Noahs out there, with moms like you, have a fighting chance at getting through this mess we call a world in one piece.

You and Jason are two lucky and loving parents.

Ezra and Noah are two lucky and loving kids.

There need to be more moms like you and more dads like Jason.

<3 geiger


Noah's going to be ok. You know we've struggled with Michael and aggression and I think those myths about public school are myths. Because I flat out asked when we were deciding "what happens if Michael hits in public school" and I did not get the answer I expected.

Also, and I've told you this before, my sister is the behavior disorder specialist for our public school system. Her phone or email is open to you.


I would have lost it, too. It has been a long road with our diagnoses, PDD-NOS, Sensory integration...blah, blah...

Some days I want to advocate and scream at the top of my lungs. Other days, I just want to be "normal" and make it all go away.

Sprite's Keeper

He's beautiful. I have no other words than that. Hopefully, it's two steps forward from here.

Jen L.

He is a precious boy. You and Jason are doing a great job.

Megan@Blueberry Scones

Noah (and Ezra!) are so lucky to have you for a mother.


Amy, man. You're doing a great job. I know you get that from us a lot, but you're doing SUCH. A. GREAT. JOB.

It will get better. It will. It did before, and I know that's what makes this down swing so much harder, but it will get better.


Yeah, we all wish is was linear. KayTar is SO much better these days, she is going to be mainstreamed for Kinder even...but she's eating next to nothing right now and she's nearly 100% tube fed. It is a curvy, winding, mixed up world!

Reading this post makes me sad I missed BlogHer. It is always a great opportunity to discuss KayTar's weird shit with a non-judging group of people.

FreeRange Pamela

Oh, Amy. I know we talked about this briefly at BlogHer but I wanted to say how I feel for you. He is wonderful, and so loved, and it's going to be ok.


I don't want to say Noah's so lucky to have you or you're such a great mom (though you are) because I read your post over at The Stir today. But what I love about your writing, and what often moves me to tears, is that you so eloquently write about how much you want to keep Noah from hurt. And I think that's something that we can all relate to as parents.


Panic attacks suck. My 11-year-old with Asperger's--ELEVEN YEARS OLD, I still can't believe that this was even an issue--had one, six months ago, over a pair of tweezers coming at the Monstrous Toxic Shock Splinter embedded in his hand.

He broke our dining room table.

But! That was the first one he'd had in years--YEARS. He hasn't had one since, either. And I didn't even get him early intervention, he's only been getting help through the school system since he was in preschool, but it still helps *so* much. You will see it in Noah, too.

(Also. My more-autistic [or however you'd like to refer to it, my son doesn't hand-wave or verbally stim and she does] daughter hurt her kindergarten aide so badly that the poor lady had to go to the hospital for a wrenched shoulder. The school's response? Get a behavior analysis and develop an FBA for her. Her FBA wasn't renewed last year because... she didn't need it any more. See what I mean?)


I think you know this already, but it let it be said again, you and Jason are amazing parents who are doing the absolute best you can for Noah. And Noah is an amazing precious kid who is leading a life worth living, and will go on to be an amazing wonderful person, because of you and Jason.

Rock on mama, with tears or without.

Momnivore's Dilemma

I'm not going to placate you, because having children isn't all sunshine and lollypops. Especially, when your child has "special needs"...whatever the hell that really means.

Special needs in my house translates into boatloads of patience *which is running on empty lately* and me crying in my car in the parking lots of grocery stores.

I feel ya, Amy, I really do. I've been reading your blog since my son Moose was born. We lead parallel lives (minus the fact that Noah's a few years ahead of Noah).

I'm grateful that we all have this community of blogging to vent. I nearly busted out a glass of wine with breakfast this morning...

Chin up, mama.


Thank you for teaching us and helping us to understand. You, and your entire family, are doing an amazing job on this journey.

Amy @ Binkytowne

oof. this made me cry for the second time today, the first being after I read your Stir post.. He'll get there again, I'm sure of it. My son isn't dealing with the things that Noah goes through and he still has wierd two-step-back-isms and freak outs and terrible meltdowns. Of course, as his mom, you want to tell them it will be OK.

Here's me telling you, while I did virtual clean but crumpled tissues from my bag, that it will be OK.


Sending you love.


I think that all would have made me lose it too. You know, sometimes when a child is getting ready to make a big developmental leap, it can cause occurrences like Noah's panic attack. I know my kids seemed to have nightmares right before they hit some intellectual milestone when they were little. Maybe his panic attack was caused by something like that.

That said (sorry if it came off a little assvicey) I truly believe Noah is going to be fine. Y'all are truly incredible parents.


I think that all would have made me lose it too. You know, sometimes when a child is getting ready to make a big developmental leap, it can cause occurrences like Noah's panic attack. I know my kids seemed to have nightmares right before they hit some intellectual milestone when they were little. Maybe his panic attack was caused by something like that.

That said (sorry if it came off a little assvicey) I truly believe Noah is going to be fine. Y'all are truly incredible parents.


Amy, I want you to know that you and your family are one of the contributing factors to my healing (for a lack of a better word). My family wasn't always the best, let us say, and reading your blog as your family grows has made me realise not all familys are like mine. You, Jason, Noah and Ezra make me simply desperate to have a family of my own, because I now see the complete joy and love it can bring.
I started reading about your Noah-pregnancy and Noah story after my father died. Everything around me was deathdeathdeath, and your stories of Noah helped bring me back to life. Through many nights when I was afraid to fall asleep, your words about Noah changed my tears from tears of grief to tears of amazement over life (and also some "Omg why can't I have a baby right now?!" tears haha).

Noah is an awesome kid. And everyone who has influenced him in his journey so far is awesome. You are amazing. If I can be half the mother you are, I will be very happy indeed.

Noah is doing so well at being an inspiration to the world! I am 100% certain that the other stuff will come.


What a beautiful, candid piece. I appreciate the genuineness of posts like these. You are such a wonderful mother.


Oh, Amy... Your article at Stir made me cry. And as for the crying and the not fair and all the rest? You're so entitled. Sometimes logic and *knowing* have nothing to do with where we're at in this moment, do they?


So I was sitting right behind you during that panel. I wanted so badly to just hug you when I saw you sniffling, but I figured it might be super creepy.

I too giggled at the misery comment. Is it always easy and sunny and puppies and unicorns? Nope. But it's not misery at all. I love the kids I work with.


So I was sitting right behind you during that panel. I wanted so badly to just hug you when I saw you sniffling, but I figured it might be super creepy.

I too giggled at the misery comment. Is it always easy and sunny and puppies and unicorns? Nope. But it's not misery at all. I love the kids I work with.


I'm sorry Amy. And poor Noah. I've had panic attacks and they are terrible. (Ask me about the one where I had to get off a plane in Las Vegas and the subsequent drive back to NC.) But Noah was doing better before nd he has you and Jason and his teachers and therapists fighting for him so I feel sure that he will get back to where he was and then beyond that.


Wow, it's kind of dusty in here. This one really hit me in the gut, I think. I know a little of that feeling of wanting to do something to help him and not knowing what. Such a terrifying and powerless feeling. I think you deserved a good cry if you needed and wanted one. All of us mothers want to scoop up our little ones up, protect them, help them feel safe and strong and when we can't it's indescribable. I'm so sorry you had to go through that but I love seeing all the progress Noah has made and pics of his sweet little face on your blog. I'm very glad you have the support of all your readers and fellow bloggers.


See, I held out on crying this year. At least until you picked up the microphone, and then the tears fell in waves.

This whole journey would be a bazillion times easier if it was an even, gently sloping upwards, stick-straight road. But no, it's twisty, hilly, doubles back on itself with blind curves and occasionally makes you look at your GPS and cry "What the fuck?!? We should be there by now!"

I try to be strong for Cordelia, but sometimes I'm terrified that I can't do enough for her, especially when her behavior takes a turn for the worse. But then she gets over it, and is happy again and I think I can do this.

You can do this. There are moments of pain (but hey, aren't there with all kids?), but misery? I'm laughing right along with you.


I don't know anything about all that other stuff, but darn he's adorable. <3


While his anxiety/panic issues are likely somehow related to his other diagnoses, please consider having him evaluated for some sort of anxiety disorder, particularly General Anxiety Disorder. I had panic attacks regularly starting at age 6, and didn't get properly diagnosed until age 11. That's an experience I wouldn't wish on anybody.


I can tell you, without a doubt, that any decent public school will not pull him out of an inclusion track if he hits or breaks things...that's not true inclusion... if you are at a school where that would happen, find a different one!!


this came at such the right time for me. my sam is 8, has AS. 2 weeks ago he had a fit and smacked me, hard, in the legs with a light saber. it scared the crap out of me for the reasons you write above. and last week he flew into a rage at a friend's child and called him an asshole, twice. thanks for sharing, you helped me.


Jar-Jar is enough to push anyone over the edge, NT or otherwise.

In any case. I read somewhere once (it was either in a geology textbook or a Peanuts cartoon; can't remember which) about the expansion and contraction of glaciers, and how they can lurch forward two or three feet one day, then retreat eight or ten feet the next day, and then expand forward again on the third.

It's popped into my head as a metaphor for ASD more than a few times, and a reminder that - for many of these kids; our kids - while linearity is nice... it's not the only way to grow.


I am panic prone. To the point that it is messing with my life, and I am 32. He will make it. I don't know about sensory issues like these because I don't have history with them, but I know the feeling of abject irrational fear over something as silly as a dvd. Hugs... hold him close on the good days... love him the best you know how on the bad. It's all the same if it's REAL LOVE!!


You need a hug. Thank you for putting all of this out here. We're also going through some rough stuff with our FAS adopted son. His issues aren't the same as Noah's in terms of diagnosis and labels and all of that SpecEd gobbeldy gook, but they are remarkably similar in terms of how difficult the world is for him to navigate sometimes. It is good to know that we are not the only parents who are in the dark when it comes to raising a happy, confident child in spite of fighting a deck stacked against us. It is good to hear that a variety of therapies work for real kids in real ways. It is good to know that there are other parents out there who will not look at us like we are stupid/insane/incompetent when we have deal with "an issue" in public in an unconventional way.

Thank you, thank you, thank you. Every little thing gonna be alright. For all of us.


I just finished dealing with an hour long violent melt down with my (autistic) son, all over a stupid over-ripe banana. Then I opened this and I cried. I rarely comment here but felt compelled to say thank you for your voice, it is most definitely a light in a sometimes very dark tunnel for me.

Aunt Becky

Those panic attacks always come out of nowhere for me. I wanted to come to your session, but knew I'd be the one hyperventilating in the corner like an asswad.

Not actually about my autistic son, but the other one. My daughter. Who is going through this all again.

I wanted to be there so, so badly, though. It broke my heart not to be there.


I want to preface by saying that I don't have a child on the spectrum, but I'm a special education teacher. I sometimes find myself thinking I'm not qualified to comment because I don't have the 24/7 gig, you know? Anyway, I completely understand your reluctance to put Noah on meds. What I can tell you is that if he truly needs them, and only a developmental neuro./ped. can tell you for sure, they can be a huge relief to him. I've seen kids blossom and almost palpably relax with properly prescribed meds. The "zombifying" side effects that take away the essence of a kid and are a big (and legitimate) concern aren't the norm if you're working with a good doc. Again, <>, I'm just saying not to close the door too hard.

Heather, Queen of Shake Shake

Amy, I know you know about kids who are intolerant to chemical additives in food. Although this week I looked into Feingold's diet and found out there are eight other chemical additives he recommends taking out of diets for kids who react to food dyes.

Now I'm going out on a limb here and ask you if you've ever suspected Noah could have a form of reactive hypoglycemia? It never occurred to me to tie that with my son's sorta out-of-the-blue crazy behavior, like you mentioned. Fine for a while, then...not! He was 8 before I made the connection and it has made a big difference for us. So I thought I'd mentioned it on the off chance. Email me if you'd like some info on how it affects kids.


Forwards then backwards. This is the way of the spectrum. I can only hope that one day something clicks and we move forward forever.

The comments to this entry are closed.