Catch the Spirit
The Art of the To-Do List, Amalah Style

A Is For Awesome

It figured, I guess. After a fantastic week of zig, it was time to zag. Noah came home on Thursday (post-poetry reading, which was ADORABLE) with a big fat envelope of assessment results. 


And there it is. 

I've been trying to write about this since Friday, I've started and stopped and deleted huge scads of text and then CTRL-Z'd them back because they seemed like better than nothing. I finally just started over this morning; apologies if this mostly turns out to be disjointed and rambling.

Not long after the psychiatrist finally said the word "Autism" out loud to me — a word I swear I have asked about and brought up to just about every therapist, teacher and assorted expert we have met with over the past six years, a word that NOBODY would ever commit to — I attended an IEP meeting.

This year marks the final year that we can use the catch-all code of "Developmental Delay." In the beginning of the year I was a little stressed about that, since none of the diagnoses we'd been given prior to that point (sensory processing disorder, dyspraxia, etc.) are options for the school district. ADHD is, however, so once we got that one, the reevalutation assessments and codes looked pretty clear cut. 

Until, that is, I said the word — the A word — out loud in the IEP meeting. You'd think, based on the reaction, that I'd hurled a live grenade full of laser sharks on the table. Everyone sat up, flipped through papers, grabbed pens and started talking at once. Really? We thought so? His doctor thinks so? You're going to pursue that? Okay. Okay! That changes things. Everybody back up and start over.

The school was now obligated to assess Noah for ASD in addition to the ADHD assessment, the only one they'd been planning to do until I opened my mouth and said it. The school psychologist straight-up said she didn't think Noah would meet the diagnositic criteria. His teachers admitted that yes, Noah definitely struggles with a few Spectrummy quirks and rigidity, but but but he's so social! And so, you know, high functioning! I agreed, but said that we'd just feel more comfortable running both assessments. And that we'd be getting one done privately as well. So. That too. 

I assumed the school would indeed tell us no, Noah doesn't meet the diagnostic criteria or that the Spectrummy quirks weren't having enough of an academic impact to merit that being his primary IEP code. I assumed we'd get ADHD and then have to fight going forward to get the other social/behaviorial goals on his plan, and/or fight to get them to acknowledge the results of a pricey private eval. (I guess I should mention the obvious — district services for Autism are much more comprehensive than ADHD.)

Do I ever get tired of being so wrong all the time? Because AS USUAL, I was wrong.

The ADHD assessment revealed that Noah's ADHD symptoms are vastly improved and barely having an impact at school anymore. The ASD assessment, on the other hand, revealed elevated and highly elevated scores across the entire damn board. It is having a hugely significant impact on him and that a comprehensive plan is very much needed, particularly going forward to support Noah through junior high and high school.

The whole time I was reading the report, my emotions flipped around and switched back and forth after practically every sentence. Relief at seeing it finally spelled out. Shock at seeing it there, in black and white. Sadness at reading how hard it still is for him. Elation at realizing that things are going to get so much better and so much easier now, now that it's finally spelled out in black and white. 

It changes nothing and everything at the same time, if that makes sense. 

Noah walked in while I was still reading, and he realized I was crying. Just a little. Just a couple involuntary tears. He asked if I was okay, what was I reading, why was I sad? I assured him that I was fine, I wasn't sad, and that I was reading about how smart he was. (This was partly true; his educational/IQ assessments were all excellent, though they think his other issues kept his scores from being even higher.) He gave me a hug. 

"It's okay, Mom. You can feel happy. I'm super smart."

Oh, my amazing, awesome Noah. I do. And I know. 



A few involuntary tears here too. awesome mom, awesome kid. I hope it gets easier as it gets harder (bittersweet?)


It sounds like he (and you) have a great team at the school. This is going to make a huge difference for him and let him shine. It is hard to see it all in black and white.


I am so happy for you to finally have THE WORD put out there. It has been spoken. We are still in that holding pattern. For yeas now. We've been shuffled around, doctors, therapists, teachers, all conveniently skirting THE WORD. We just found out we are repeating 6th grade because of these same issues that clearly aren't just ADHD but nobody will say THE WORD. If they'd only just say it, our world could possibly be changed. I wish so much good luck and good things for you and for Noah.

Jessica V.

I just crumpled into tears at the end of this post. Oh Noah - you ARE SO SMART! What a sweet boy you have there Amy.

My oldest son has ADHD and we are in the midst of trying to figure out the right medication dose for him before school ends (we'll give him the summer off of meds. (The meds decision has been a long, confusing road, with several stops along the way, and I'm still not sure we have it right). He goes to a private school here in California, so isn't under an IEP right now, but oh! it is so hard to see him struggle, but also gratifying to know that his teachers have his back and love him as much as Noah's do. Thank you for sharing your story with us.


wow. so awesome

Sandra Timmerman

Big hugs :-) Noah'l stay the same. And as much loved as ever before.


*hugs* just remember they VERY recently changed how ASD is diagnosed so it's 100% possible that Noah wouldn't have qualified for the older diagnoses which IMO was a lot more *dire* then the new one (hell reading I am reasonably sure that I am ASD and kinda glad I'm no longer in school, though this kid in mah belleh, yeah, I try not to think about too hard)

Noah is beyond awesome, as are Ezra and Ike, and I would gladly give my left arm to have a kid anywhere near as cool.


I just want to give you a hug.


Yea for a brilliant boy! I'm so glad the team at your school is so good. Wow. We're in a similar (nearby? neighboring?) boat-- our son was diagnosed last summer with ASD, and I'm pretty sure he has ADHD as well. He's too young for most of the data-based ADHD assessments, but I think it's in there as well. Starting first grade in the fall at a new school. I hope its a good fit!


Just hugs. Noah is an amazing kid with an amazing journey ahead of him and so lucky to have a dedicated, loving mother (and family) by his side.


The black and white part...yes that was hard (ours was a few years ago and "PDD-NOS" was actually a diagnosis back then, but now I guess it would be ASD. I cried, not because it changed anything, but because I was so scared for him. But all it did was help us get him the help he needed. Truly a blessing in the long run, but still hard to see the first time. From now on, it won't matter, it's just a word that will only help Noah. Noah continues to be his awesomeness :)

Janice Barnett

I remember getting that news when my son was in kindergarten. I cried as well and was extremely overwhelmed. I watched my son go through school which my husband and I both fought every year for the structure that he needed in order to succeed. Jim has graduated from college after six years but now struggles with finding a job that can work with his limitations. We have also discovered that our daughters little boy is now being tested for autism and I sit back and watch many of the signs in Nathan that I saw in Jim. Yes and once again I cry because I know the struggles that he is going through but also realize that the potential for greatness can never be underestimated.


It changes everything and nothing. Yes, that sounds right. It changes the level of help he gets, which was always the level of help he needed, and it's so great that he will get what he needs. And it doesn't change a damn bit how much you love that awesome kid who wrote the poem.


I'll say it again since it's been a couple of years or more since I commented here. You and Noah are so very lucky to have the enormous amount of professional knowledge and support now available. If only my 40 year old son had such opportunities his life would be so very different, he would fit into this world so much better.


We got the word last week in our private evaluation. You write exactly what I am feeling. Thank you for this.


We are in the process of getting our son's assessment and this reminds me of what my mom-coach, with two spectrum kids, said to me and I'll tell you: "at the end of the day, he is still and always will be, just your Noah"


Noah is so very loved and awesome, Amy.
How wonderful for him to be just like his mama, daddy and his brothers.
I also have tears rolling down my face, yet I am most full of great joy knowing you are exactly the woman your son needs.
I have great hope in my prayers for parents who are in need of parenting skills to google the word LOVE and find your words.


Just a big hug. I don't know what this feels like, but I do know Noah is lucky to have you.


i knew i was going to cry no matter what you wrote. Big hugs and Yes Noah you are super smart!


Noah is an awesome kid and you are an awesome mom.

I think I can empathize with some of your feelings - I have a son diagnosed with epilepsy and when that finally happened, all kids of emotions - validation, some relief, some sadness and a whole lot of thinking about the future.


I don't comment much, but read all the time (I have been wondering how the deodorant wars are going?!). Listen, I am an actual scientist and I work on the genetics of ASD. Here is what you have to remember. It is a SPECTRUM. We are ALL on the spectrum, literally. Some of us are at one end, others are at the other. Noah is an amazing, interesting kid who has lots to him other than this diagnosis. In my world - which includes two boys (ages 11 and 14) whom have benefited from an IEP, for totally different reasons, the "diagnosis" is all about how you get a bit of help. It is the KEY to a whole lot of help to make your life easier and your kids life better. You will figure it out!


This is where we are, only my DS is 4. I am struggling to come to terms with it. At times I dont believe it, at times I agree. The former Spec. Ed. teacher in me sees the pros and cons. But seeing that label is black and white, attached to my baby, is breaking my heart- knowing what struggles he faces ahead.


Long time reader, first time commenter. (Why does that matter anyway??) I'm curious why it took you asking about ASD for them to asses Noah for it " officially" given his other diagnoses. Especially since he clearly fell within the spectrum of qualifying for help (which - yay!! So glad you finally have an answer - in black and white). I mean - shouldn't the school have suggested it? Or is that just not how it works?


I can't remember if I ever mentioned this here before, although I've commented about lots of things over the years... Max and Ceiba, mostly.

I am now about to say something I struggled to say for years. Ahem. I have a mental illness. We don't know what it is. It mostly resembles bipolar disorder, except not. I had a serious depression when I was 20, and my mood definitely fluctuates in a trackable cycle. I talk fast, and I am a very upbeat, social, fun person except several times a year, I have a period of time when I struggle to get out of bed and function like a proper, hygienic adult. I have periods of time when I get really disorganized and I lose shit (keys, phones, cameras, oh my!), but ADD doesn't fit. I tried Concerta, Ritalin for grown-ups. I got terrible headaches. The improvement in my organizational skills wasn't enough to justify the never-ending headaches.

I play with my eyebrows when I get stressed. Compulsively. I tug them; I don't pull them out. I'm not classically trichtotillomanic though. I do it less when my eyebrows are well-groomed and recently waxed. Is this compulsivity part of OCD? The only other OCD thing I do is lock my car twice every time.

I have verbal tics that I can control with effort. Alone, in the car, when I get embarrassed, sometimes just walking down the street when I'm very tired, I swear out loud. Doctors, assessments, blah de blah all say I do not have classic Tourette's.

I resisted every ones of these labels, hating them. I spent years not wanting to be bipolar or crazy or the eyebrow-tugging lady who shouts obscenities in her car when she's tired.

I am also a happily married, creative, gainfully self-employed adult who- with therapy and medication, regular sleep and various organizational systems from the Container Store- functions like a regular person with a rich, full life. I know myself very, very well.

I have to be vigilant, for sure. I have to go to therapy every other week and work hard when I'm there. I have to swallow two pills every day at the same time. Whatever this psychological salad is, with its lettuce of depression, cherry tomatoes of bipolar, croutons of ADD, croutons of trichtotillomania, cheese sprinkle of OCD and bacon bits of Tourette's, it doesn't have a name. It's a little bit of this and that. It doesn't matter what we call it, as long as I get what I need.

And I am happy! I am happily married, well-traveled, college educated, successful, loved, surrounded by friends and pets and hopefully a baby soon (tww before I poas or get AF... ah, remember those days?)

My point is... It doesn't matter what you call Noah's stuff. He's getting what he needs. The labels get him what he needs. He's functioning. He's smart. He's loved. He's interesting. He's coping. He has a salad of stuff. Lots of people do. It's people who don't know about their stuff or who are forced to hide it or who self-medicate that really struggle.

Noah and me? The quirky, undefinable, "let's label it this way to get what we need for now" salad bar people with resources, involved family members and coping skills? We are the lucky ones.

It just doesn't matter what you call it.


A - bravo to you! We are a world full of quirkiness IMO. I have learned over the years that you never know what goes on in someone else's house so don't think the grass is greener. I wish you continued success managing your illness.

Amy - I know where you are coming from, on a different level, but I understand. My youngest was evaluated by his school this year and I cried when I read the pages and pages of reports. But, I noticed a difference right away in regards to his attitude toward school. The IEP is saving him and us. It's hard and I hate that it's so hard for him but deep down I know he'll be OK. My sister actually mentioned to me today (she was asking about his testing and accommodations at school) that when he goes to college be sure to keep on with the accommodations because they helped her when she was in college. I don't think I ever really thought about it at that level.


ps. Your initial ADHD post prompted me to talk to our dr about my youngest. I really am thankful for this blog and all the commenters who share great info.


This is so powerful, and so helpful to other parents who struggle similarly with issues of diagnosis and treatment for our quirky kids. Thank you so much for your courage in writing about this, today and for the past several years. Your blog has often made me feel far less alone in the process of dealing with my own kid's stuff. Thank you.


Welcome to the club! You're right, it only changes the access to and diversity of services available to him, not him. He's such a sweet heart, I hope everything continues to go well for him and for all of you!

Sue C

Bless your heart! (Yes, I am from the South!) I do know those feelings, relief, to have it spelled out, grief, that what you knew in your heart is really true and hope for solutions for things to come. So many before you have successfully been down this road and you are helping many more to begin their own journey. Bless you all.

Kaycee in Texas

May the availability for services be ever in Noah's favor.


Tears here too. You are an awesome mother and Noah's needs will be met. (((hugs)))


My daughter was initially diagnosed as ADHD, but around 2nd grade it was re-evaluated to ASD. Best. Thing. Ever. to happen for her. She is high functioning, bright but has issues with social skills. Luckily, we live in a school district that is a leader in our state for ASD services.
It is difficult as a parent to hear the word "Autism" but it is just a label. It has helped us understand what she goes through on a daily basis and her struggles that we don't always see. She will be a senior next year and is fully capable of college. ASD kids are awesome and wonderful.

Another one

Just know that my 9th grader got her diagnosis this past summer, and this morning was complaining to me about "able-ist" advocates on Tumblr. "What do you mean?" I said. "Oh, this woman who is the head of Advocates for Disabilities was arguing with someone and saying 'I don't have Asperger's, YOU have Asperger's.' It was so gross. Like it was an insult." And I asked her how it felt when she read that, did it feel like, "Hey! I have something close to Asperger's, lady! Watch it!" and she smiled and said "Yeah." And having her own it, and see that it's not an insult? Which you can only do when you've named it? An awesome feeling.


WOMAN! I am wearing mascara today!
I wish we lived in the same area because not only would our boys play beautifully together but they keep having simultaneous experiences and their mother's could drink wine while sharing.

This new DSM scared me until we too asked for the eval. and they too picked up their pens and jotted notes. We even got a small amount of summer school to help with regression.
He is smart, he is awesome and he will do very well because of you.

My question from one 'A' word momma to another....
What are you going to tell him?

My son knows he has sensory processing issues and sometimes uses it as an excuse. I am afraid will lean on a diagnosis but at the same time, what if he learns about it from someone at the school or a therapist? I would prefer it come from me...


With my son's Autism diagnosis we were able to get ABA services funded through Tri-Counties. Best. Thing. Ever. If anything at all, you can use this label as a avenue to getting an amazing service, I recommend it! It is a commitment - my son has 10 hours a week of ABA on top of school and OT, but his behavior has improved so much! As a result of just learning how to be more flexible, collaborate, transition and etc his anxiety has decreased and he is just a more relaxed, content kid. Unfortunately we would not have gotten ABA funded with "just" and ADHD or Sensory Processing Disorder diagnosis. We were also able to get our insurance to cover OT as well with the Autism label. We paid out of pocket with plain ole SPD. F'd up for sure, but that's the maze of special needs services for you.


The biggest change is that you've been handed the correct key to the toolbox to get him to adulthood in fine style. And he is fabulous. :)


That boy is so precious! Thinking of you Amy - Toby was diagnosed five years ago, at five. I remember the emotions well. xx


Aw, Amy. I know it's hard, and I can very much relate to the mixed feelings. My quirky guy is just finishing 6th grade. He started kindergarten with a diagnosis of SPD, which the school told me was not "educationally relevant". We knew there was something more going on, and knew an ASD was a possibility, but we really didn't believe it. Still, we knew he needed services and we knew he needed the services that were provided to the ASD kids. Fortunately (??), the neurologist, psychologist, and school assessment team weren't as on the fence about the ASD diagnosis as we were and it became his primary eligibility. The eligibility opened the door to a plethora of very necessary services -- services that have made the difference between success and failure for him (at least academically, he still doesn't have any real friends. sigh.). It's been 6 years since we got the diagnosis, and honestly, I still don't really believe that it has any relevance beyond his IEP. Noah will be fine. More than fine.


That sounds awfully familiar. Everyone thought Harry couldn't possibly have an ASD, because The Social! The Eye Contact! The Flexibility! Fast forward a couple of years: the HFA diagnosis has lifted a huge burden from my shoulders in terms of actually comprehending why attempting A+B always = Catastrophic C, and, now that we know _why_, there is no need to be doing those sort of sums with this child whatsoever. As everyone else has said: the diagnosis simply opens doors. The shock and sadness won't hang around, I promise.


Thank you for sharing your experiences with all this. I don't have and personal experiences with ASD/SPD/ADHD but I feel more understanding and compassionate from hearing about Noah's challenges and progress. I've said it before, but you are a great mom!


Dear Amalah; I have to agree with Monica-we are ALL on the spectrum somewhere! This is the thing I impress on my teenage daughter-who is in a w/c: We are all different-some people are good at soccer, some people are good at math, some people are good at both. If something is hard it doesn't mean you can't do-just that you might need to work harder at it or change how you do it. I agree too that Noah has a great team in his corner-he is going to do well!


"It changes nothing and everything at the same time" -- yes, makes absolute sense. And he is smart. And he has the support and love and guidance he needs and I exhaled for you.


Thanks for posting. I kind of didn't realize the school does its own assessment. I have a ADHD kid starting next year at a school in the same school district as you. Is there any reason to have them do an assessment? What kind of related services can one get with an ADHD IEP? When you have time, I would LOVE for you to do a post walking us all through the IEP process...I'm feeling lost already.

The comments to this entry are closed.