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The Next Big Thing

We met with a new child psychologist this morning. So I spent last night organizing and re-filing the mountains of old paperwork we've collected over the years. Old evaluations, assessments, treatment plans, progress reports, IEPs, re-evaluations, insurance rejections and appeals and God knows what else. 

Something old, something new, something photocopied, something blue.

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(The cup. The cup is blue. The cup is also full of vodka.)

Reading through those old files is both oddly inspiring and completely masochistic. On the one hand, how far he's come! The things he says and does! The mind-boggling number of victories, both large and small (and medium and miniscule!), that we've celebrated since that fateful day when I took my non-verbal almost-two-year-old to the pediatrician. When that pediatrician cocked his head to the side and asked, "Does he walk like that a lot? On his toes?

He did it. We helped. I have no doubt that the things we've done and the people we've worked with have absolutely helped. There are miracle workers in that pile of papers. Bona fide. 

And yet. Ugh. The mistakes are all there too. The consent to discontinue services form I signed for Early Intervention. The progress reports from the mainstream preschool he never should have attended. The very first psychological evaluation that revealed a child buried so deep within himself, that made me wonder if we'd ever be able to pull him out, that made me wonder how in the world I'd missed how serious things were. Noah wasn't just "challenging." Noah was...well, something with an acronym. Something with a diagnosis, a code, something that probably wouldn't just vanish at the end of the "terrible threes."

(And the money. Oh my God. The money.)

But then this morning, we were asked for that diagnosis. And for the millionth time we sighed and shrugged. It's complicated. Little from column A, a little from column B, a little from column Planet Quirkozoid of the Weirdo Nebula. Nobody will commit to Any One Thing and there's always an asterisk after every evaluation. He's Spectrummy and Inattentive and Hyper and Uncoordinated and Anxious and Rigid. He's also Smart and Imaginative and Verbal and Affectionate and The Type Of Kid Strangers Watch At Parties And Declare That There's Nothing Wrong With That Child, So Why The Hell Do You Have An IEP Again?

We talked with her for close to two hours. We probably could have talked for another two, easy. At the end, I handed her the freshly organized binder, full of the Old. 

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I'll pick it up next week, when we once again start something New. He'll visit and play and talk about his feelings and fears and what it's like to live inside his head. They're going to do some yoga together. 

In with the New, onward, ever upward, packed to the gills with hope and optimism. He can do it. We can help. 



So totally sending you hugs and more vodka.

My son is more cut and dry on the spectrum (diagnosed squarely in the Asperger's camp at 5), OCD, ADHD and a host of other things. Through it all, we've had some fantastic doctors and finally, the perfect school setting for him.

Keep doing what you're doing-it clearly is what Noah needs. Don't beat yourself up for the past mistakes-we all make them in the interests of giving our kids as normal an experience as possible.


Just the fact that you have a neatly organized binder (regardless of the amount of vodka required to compile it)? Well, that just makes my little social work-y heart sing.

You've all come an awfully long way... well done.


As a professional in the field, I am so happy to hear that he's seeing a psychologist. I think that is a great move. Most psychologists I know don't CARE about the diagnosis, but care more about how best to help the person. The diagnosis is really just something put on paper in order to get reimbursed by insurance. Noah might have a little of this and a little of that, but that's what makes him Noah, and getting to know Noah the kid, (not Noah the kid with PDD or OCD or ADHD) and figure out what makes him tick and how to best help him navigate through this world in the best manner that he can will be what the psychologist will (or at least should!) do.

The Tutugirl

I don't have any uplifting stories or personal experience with this stuff, but if anyone can do it, it's you, Amy. Noah is so lucky to have you.


Hugs for all. He's so amazing, as are all of you!


Stop beating yourself up for signing that form all those years ago. Repeat after me: "we do the best we can, and when we know better, we do better."

Your a great mom.


The pride of being able to see all the progress already made is always balanced out - in such awkward and painful terms - by the challenge of trying to strategize around all the strange and uncertain terrain that still lies ahead.


This stuff is never easy.




I feel like my oldest is so much like Noah, just a year younger! We are getting ready to enter kindergarten and my thoughts are so similar to yours. And yet, they are these fantastic little boys, aren't they? So proud of how far Noah has come.


Love this. Love Love Love this. Kudos to you all. I have another blog I read and her two yo is non verbal and walks on his tip toes etc. They just "sorta kinda" diagnosed him as "a maybe" Austic but "very light". I.e. they have no clue. I sent her to your blog. I hope she sees this.


Someone told me the other day that kids like Noah (and my daughter), are harder to work with because they walk like a duck, they talk like a duck, but they don't act like a duck. Of course to the untrained eye, they do all walk and talk the same, even though we know differently. But those words, out of so many I've read over the years stuck with me this week. Because its so true. We expect them to act like ducks, but they aren't. They can pass for 'normal' at bday parties even though we know they aren't. It's a tough road to forge as a mom. You'll do all sorts of stuff for Noah over the years. Some will work, some will be money down the drain. That just comes with the territory. Don't sweat it.


You really inspire me as a parent. You always do what you think is best for your kids, and you deal with struggles so well. I think you have a great attitude and all of your boys are lucky to have you and Jason as parents.


You're amazing. And so is that little man.


He damn sure can do it and he will and yes, you will help.


Sending you a hug of support, because as challenging as your journey has been, you keep climbing.


After seeing where Noah is these days all I'm thinking is, "That kid's gonna be alright". Good job, mom.


sniff. You're so inspiring to me as an about to be mother. I know I'll never know what the experience will be like, but seeing how you've navigated through everything helps calm me a bit when i get a little panicky about what to expect. Your boys are so so lucky.


"The Type Of Kid Strangers Watch At Parties And Declare That There's Nothing Wrong With That Child, So Why The Hell Do You Have An IEP Again?"

This is my son. My wonderful, affectionate, smart, difficult, rigid, tantrum-y son whose summer camp director just called yesterday to tell me that he can't handle the full 6-hour day without a SEIT. We only get 10 SEIT hours a week.

Your posts about Noah ring so true to me and they give me hope - hope that my son will be OK, that I will be OK. Thank you.


My oldest is four, and struggles. Not as much as yours struggles, but he has some major speech and learning issues, some barriers to understanding that we are still struggling to figure out how to bridge. We also, like you, frequently get the "there's nothing wrong with that child!" comments, which drive me up a goddam wall, but I digress.

We also have a kid who turned two a couple of days ago who, this morning, read all the letters off of a graham cracker box.

So here's my dilemma, in blunt bold non-tactful words: how do we raise Struggling Four Year Old next to Genius Two Year Old without making my big boy feel dumb? Without making my little boy feel like we need to hide his talents so he doesn't make Big Boy feel lesser than? How do I reconcile these two vastly different children, and make them live in the world and grow up loving and accepting each other?


Well done you guys. I know how hard it can be. My Toby is eight and has Aspergers and dyspraxia. It's amazing the struggle these little guys have which people wouldn't know because they are the sunniest, most adorable kids! :0)


You always write about Noah so beautifully. Except for these posts, I never remember that he has a "diagnosis" (or un-diagnosis, as the case may be).


Your binder is the stuff of dreams. I get the sense that you are one of my people - who roam the aisles of Office Depot like others might skip merrily through Nordstrom.

I hope the new course is all that Noah needs and deserves. He's a lucky kid. And I swear I didn't just add that last part to avoid looking shallow by commenting only about your sexy binder. You know you can make a custom insert to put in the front pocket, right????


Isn't that what we all want for our kids? Safe passage through life? But we know we can only help, guide, show them how to make the right decisions.

Of course it's much harder with a special needs kids, especially harder when they have a mish mash of diagnoses. That goes without saying.

We all watch them with trepidation as they cross every boundary. It's our job as parents to make sure they know how to get over the hurdles life presents them, whether they are small, medium or enormous.

I think you're awesome, Amy.


Yes, you can help and yes, he can do it. Sometimes when I see how big he is and how much he is accomplishing, I remember that birthday montage with "say what you need to say" playing in the background and the tears we all shed for you and your sweet boy. And just look at him now! He's getting there one step at a time. You keep leading. He'll follow.


Hang tough, Amy! Next year you will look back on this post and again realize what great accomplishments he has made!! Super Noah!!


I love that I found your blog. I've been reading for awhile now, and am so glad I do. I love that I can read about Noah then and Noah now, and I can look at my son and think "Someday...someday MY SON will do that too..." You are my inspiration when I have crappy days with him. Like today...which is DJ's 4th birthday, and he's sick. Again. Which means all of his expressive language has turned back into grunts and whines until he feels better and his brain lets him act like a person again. Sigh...


my son recently had his eval, and despite some issues and indications that he might be "on the spectrum", he did not qualify for services. at first i was relieved, but then i was disappointed, but i got worried. are we doing everything we can? we're still on the wait list for speech therapy, for receptive language. our nearly-three year old is talkative, but doesn't understand as much as other kids. or follow novel directions well.

reading your blog entries about IEPs and stuff has prepared me for a possible life of advocating for my boy. if you can do it, so can i.


I know this sounds cliche but Noah sounds just like my Joe is some areas. Joe was dx Asperger's and ADHD last Nov. He was born just after Noah in Oct 2005. Although Joe talked very early he had a lot of the same issues as Noah. I remember reading and being like hey, my kid does that too! It took forever for me to get someone to see what I saw. He is not his diagnosis and he is such a blessing. It is only a piece of paper to help explain the unexplainable. Good luck!!!


I know this sounds cliche but Noah sounds just like my Joe is some areas. Joe was dx Asperger's and ADHD last Nov. He was born just after Noah in Oct 2005. Although Joe talked very early he had a lot of the same issues as Noah. I remember reading and being like hey, my kid does that too! It took forever for me to get someone to see what I saw. He is not his diagnosis and he is such a blessing. It is only a piece of paper to help explain the unexplainable. Good luck!!!


"He's Spectrummy and Inattentive and Hyper and Uncoordinated and Anxious and Rigid. He's also Smart and Imaginative and Verbal and Affectionate..."

That, right there, is my fiance's little brother, in a nutshell. The family has never been given a definitive diagnosis as to what exactly is "Jimmy's deal". Every expert consulted has come up with a different diagnosis, along with a fistfull of pills that will "help". At various times he has been labeled paranoid schizophrenic, bipolar, mentally impaired... He is none of those things.

Fortunately Jimmy's mother, Carolyn, was a nurse, and knew enough not to buy what they were selling. She fought hard for Jimmy, as you are fighting for Noah. I believe it has made all the difference in the world.

Jimmy is now 32 years old, and until a year ago, he still lived at home with his mother and stepfather. He has a good job, (two, in fact) and he drives his own car. He has an active social life, and a girlfriend. We all just accepted the fact that he would never leave home.

A little over a year ago, Carolyn died unexpectedly. (Jimmy's father died when he was just ten years old.) Our grief was compounded by the worry of what was to become of Jimmy. He and his stepfather don't get along with each other, and while they had formed an uneasy truce, we knew it wouldn't last long.

Unfortunately, we were right. We were then faced with some really tough decisions, as we live in another state and are too far away to look after him. Five months after the funeral, Jimmy announced that he was sick of his stepfather's shit, and was moving in with his girlfriend.

We speak to him every day by phone, and I am happy to report that he is thriving. We are both stunned and overjoyed. Carolyn's love was an umbrella that sheltered Jimmy from the rain, but it also blocked out the sun, so he didn't grow. I suppose that we, too, were guilty of focusing more on his limitations than on his abilities. Never before in my life have I been so happy to have been proven wrong.

Stay strong. Fight on.


Your journey with Noah is one of the biggest reasons I read your blog. My son is a little bit of this and that too (recently got a "provisional" diagnosis of PDD-NOS, but not nearly where Noah is or has been). Honestly, your sharing about Noah's story has helped me a ton with understanding my son, understanding what to do and how to help him, and just feeling less alone about some of it. I have loved watching the progress he's made. We all make mistakes, but it's not what defines us. There are a lot of kids out there like Noah who don't have nearly as great of parents as you are, and that makes all the difference. Thank you for letting us into this part of your family.

Shannon Lell

I can't even pretend to understand what it's like to have a child with "spectrummy" issues, but I think I had an epiphany while watching a documentary on autistic kids. I think I can understand the fear, the pain and the uncertainty just a little bit. I wrote about it. It is my love letter to moms with autistic (and your case, spectrummy) kids. Onward and upward! http://shannonlell.com/2012/04/24/to-the-warrior-mothers-of-autistic-kids/

Mary Beth

Thank you for posting about Noah's journey over the years - mistakes and all. Others really are listening. We took our daughter to be evaluated by EI when she was 15 months after a comment by her pediatrician in large part because of what I had read on your site over the years. I really doubt I would have known that EI services exist - or what to look for - without your blog. And she qualified - both for speech and for OT. Today, just before her second birthday, she's "graduating" from OT and has made huge strides in speech. I have no doubt that therapy has helped (mostly helped us help her). And that is such an amazing gift. Thank you.


Being "different" is normal. Having parents who work hard at helping us adapt to our cultural expectations is Wonderful and what should be wished for on behalf of all children in the world. It is tough to do, everyone messes up things sometimes. Teaching your children and self to practice Grace in self talk & evaluation is key. By the way the new book about Habit by Charles Duhigg is really good as it provides advice on how to establish habits that help us get through our day.
Keep on being strong. And keep on holding hands... we survive in our lives by holding hands with others..... Benefits ALL of us.


Reading posts like this help me so much as I look at the struggles ahead with my son. He has very different issues and has had a very different path, but I am drowning in paperwork (I need one of those folders) from the years of EI and different therapies and not sure what is going to happen in kindergarten. You are such a good mother to your boys but you are also a valuable role model and resource for us moms who are trying to do what we can and need to know we are not alone. Through the mistakes and successes it can be a frustrating place to be alone, so thank you for being so candid about Noah's path, and your path beside it.

Corey Feldman

We all do the best we can for our kids and it sounds like you have done a wonderful job.


Although I of course would never wish for my son's disabilities to be more severe, there is something about the invisibility of it that breaks my heart. He can so easily look like just a brat who needs more discipline when instead he's just on total sensory overload.

If it helps at all, knowing about Noah getting dismissed from EI has made a difference in how I handled it with my son. Fortunately his teacher EFFING ROCKS and actively works with me to make sure he is not dismissed from services before he is totally ready (um, if he's EVER dismissed, which we're kind of hoping he's not, you know?) So it sucked for you guys, but thanks to you, other kids have been able to avoid that situation.


Just throwing this out there because I don't remember ever seeing you mention it but a lot of kids (like my son) who are "spectrumy" as you put it have Sensory Processing Disorder. Before becoming a mom I spent 6 years working with autistic kids ages 3-6 so I always knew my son wasn't on the spectrum despite his "autistic like" (as we call them) behaviors. Testing/evaluation supported me in that but we still didn't know what he was. It was such a relief to start reading about SPD after his OT diagnosed him at his evaluation and be able to say "that's it; that my kid exactly."


You are incredible. I am in awe of the dedication, work and commitment to your kiddo. I feel sure that, even with blue cups of vodka, I would not be able to do this as well as you are. Your son is lucky to have you!


Noah is very blessed to have you and your husband as his parents. I worked as an OT until my youngest was born, and some of the parents I met with..... all I can say there were time I wanted to take a baseball bat to them, because THEIR child was making their lives difficult. Tough shit. If they wanted to know what difficult is is spend a day in their childs head. Thats difficult!! One parent (she was a good one) broke down and wailed "What can I do"! My response was always the same just love them. May blessings pour down on you and your beautiful family :)

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