Uncreative Post Title Number 33407279
Pretty Okay

The Long and Winding Road

Last week, out of the blue, one of the doctors finally called us back. The one we wanted to see in the first place, but had given up on. He could see us on Sunday. Would that work?

Uh. Yes?

Noah and I spent several hours with him yesterday. I sat with my giant binder on my lap — every piece of important paper we've generated since the Early Intervention days — while Noah played with a Magic 8 Ball and simultaneously broke my heart and took my breath away with his amazingly self-aware and articulate answers to the doctor's questions. 

I see too many things all the time. I'm always distracted. My ears don't work. My brain needs to be fixed. Can you help fix it? I want to be smart and I'm not. My ways are not the world's ways. 

And:

There's a war in my head and the bad guys are winning. 

Of course, these responses came out in between long, detailed descriptions of the entire plot of The Lord of the Rings trilogy, and were spoken while he turned upside-down and backwards on the couch, as if it were physically painful for him to sit still for even a minute. 

That we left with prescription for an ADHD medication was not, obviously, a surprise. 

The doctor's casual mention of Noah's place on the Autism Spectrum, however, was. 

He seemed surprised at my surprise. Because? Obviously? 

"But...my binder..." I started to say, holding it up uselessly. Pages and folders and long reports held together with binder clips and copied in triplicate. Representing years of time and money and yet the word "Autism" never appears with any clear authority. 

Instead: Quirky. Delayed. Sensory Processing. Dyspraxia. Rigid. Endless lists of symptoms that never lined up with any one thing. Battle plans to combat the vague catch-all acronyms of PDD and SPD, with a likely side of ADHD. But not Autism. 

And replaying frantically in my head, the face of every teacher and evaluator — while not technically qualified to make that diagnosis, but who we trusted to tell us if that was where they thought Noah would ultimately land — who said some variation on "no."  Or more accurately: "I don't think so," before pointing out how Noah overlapped here and there but would miss some specific diagnostic criteria there and here

And then it hit me. Oh. That was then. Before. The new DSM came out and changed it to a larger umbrella of varied Autism Spectrum Disorders. Noah's speech delay no longer kicks him out of the running for Asperger's. His high level of functioning no longer demotes his social problems and rigidity down to "quirky" or "Spectrum-y." No, he's just Spectrum, now. 

I put the binder on the couch next to me and blinked at it few times. Six and a half years of chasing down answers and solutions, of thinking we were somehow "beating"...whatever it was, and of long since assuming that there were no more real surprises in store for us because we were just so very on the ball and proactive. 

Reply hazy, said the Magic 8 Ball, ask again later.

The doctor handed me a list of names to contact about a neuropsychological evaluation, just to make it official for school. He was really very kind. 

***

I just created a new blog category for this entry called "ASD." I can't stop staring at it. I want to argue with it, to point out the obvious that we haven't had the evaluation yet and that I don't necessarily have to take the word of one new doctor over people who have worked with Noah longer. I understand their reluctance to slap the Autism label on him too early, to put him in any one category during his most fluid, plastic years.

But he's right. Deep down, we've known. I've known. But when no one else is saying the actual word it's easier to stay out in the squishy gray borderline, and to believe you'll be there forever. 

***

I've spent the last couple hours writing and rewriting the same three paragraphs; three paragraphs about what this changes and what it doesn't. I finally deleted them because frankly, I just don't know yet. I have to make more appointments and have his teachers complete assessments and get his prescription filled and focus on documenting its effects and getting that right...and his IEP meeting is next week and it's a re-evaluation year and I'm guessing this is going to kablooey that meeting right up (scientifically speaking), since I don't want him coded as ADHD because ASD means a wider range of services, but of course the private eval won't be done in time so gahhhhh. 

It doesn't change Noah, of course. He's the same kid. The same high-functioning, loving, smart, frustrating, awesome kid who has worked so hard already to get where he's at. It doesn't change our commitment to do whatever it takes to help him, or our unconditional acceptance of who he simply is. 

Without a doubt, said the Magic 8 Ball, outlook is good

Comments

Daisy

I've been reading for a long time- and Noah seems to have overcome so much so fast. I hope that the next few weeks bring more answers than questions and help him understand why his brain doesn't work as he thinks it should or could. And most of all, that all the good stuff stays right at the top and your fun loving guy continues on carrying on, being himself.

jodifur

I don't know what is different to say to you other than what I said last night other than I really think you got this. Noah is a terrific kid and you are wonderful mom and I'm here anytime you need me.

Laura Beth

*hugs* Noah is an amazing kid and he's lucky to have two awesome parents. Outlook good, indeed.

Ali

I rarely comment, but have been reading for years. Hugs to you all from a complete stranger! (That's not creepy at all, right?) I hope and pray for nothing but the best for you all. And as an aside, your writing about Noah is just amazing... I think the world needs a book from you!

d

Big hug. That first time they say the word is always a surprise, even when it isn't really a surprise. If you don't read A Diary of a Mom, that's the first place I'd go.

Ann

No single word or diagnoses can change the fact that Noah is a wonderful kid, you are an amazing mom and together you can do amazing things.

Jenny H.

Thinking Autism and actually hearing the word come out of a doctor's mouth are two very different things. And so very scary. I'm here to tell you not to be skeert. You've got this! My oldest son was diagnosed with Asperger's s six months before the change in DSM. It was overwhelming at first. I jumped headfirst into researching everything I could pertaining to my son. That helped. Having friends with similar situations helped too. Even though our children are not exactly the same because "if you've met one child with Autism, you've met one child with Autism". Still, they get it.

Hugs to you. And wine. Really good wine.

SarahB

Long time reader here. Your recent descriptions of how Noah's articulating what's going on in his head have been wrenching. And I remember earlier posts in which you've mentioned that Noah falls just shy of falling in the autism spectrum and how that's made it harder to figure out what services he should have.

The new DSM made a change in our family too. I have a relative who suffers from hoarding, and now it's officially its own illness. It changes nothing about my relative's condition, but it helps me understand and talk about it. It's clear: My relative suffers from hoarding. He has an untreated mental illness. It may not change him, but it changes the perception of the illness in the broader world and how services are addressed. It may make it easier for us to help him.

The new DSM doesn't change who Noah is--or the wonderful family you have. But I hope this process ultimately makes it easier for Noah to get what he needs and get insurance to cover it.

Thanks for being so open with us readers.

alex

Tomorrow we get the results of my 5yo's first OT assesment. This post almost made me cry, because I fear a similar penny drop moment, when all my excuses and 'he is a sensitive boy who doesn't like change' commentary fuels rather than prevents a diagnosis of something that will change our lives and his, but only in a labeling way. Because he already is who he is, and we are already committed to doing whatever we can to ease his passage through what looks like it will be a complicated childhood. And no label will change him, or how much we love him.

Or maybe the assessment will just say he is sensitive and bright and bored doing a syllabus that doesn't interest him. Who knows. I am now going to stop thinking about it again until I have to. Tomorrow is coming.

Jeannie

Another stranger here, but reaching out to say that from what little I know you, you sound like an awesome mom, and I'm sure you all will find your way through this. Thank you for writing. It makes all other moms struggling with stuff for their kids feel less alone.

schoolofmom

*Hugs* to you, from another complete stranger, albeit one with two kids on the spectrum (and two not). Knowing what the issue is in your heart, and having someone else with the authority of a medical degree make it official, are two separate things and it's so normal to feel flummoxed. I hope that having this new clarity will help you, but like you said, Noah is a great kid with a great team on his side, and the diagnosis doesn't change that.

E's mom

On Thursday, after two years of testing, we finally got a piece of paper with a diagnosis on it. ADHD. Giftedness, coexisting with a nonspecific learning disability.

And autism.

How I had fought against that diagnosis. I cried and cried and cried. Then I came home, scheduled his new therapist (for anxiety and social skills) and cried some more.

Then, my son came home from school and we played games and ate dinner just as we always do.

This morning as I sent him off to school, I sort of stupidly though "he has autism now" - but of course he's always been this way, now there is just a code in the computer that unlocks a few more things.

Three years ago, I thought I had a gifted, neurotypical child. Then I went to work at a facility for non-neurotypical children, and realized what path my golden son was actually on. But, while I was there, I also saw kids who came in with an ASD diagnosis, who, after four years in the program, no longer met any of the criteria. And heaven knows we know lots of adults that share my son's quirky traits.

I can not, and will not, ever identify as a "special needs parent". I'm just E's parent. If he'd needed glasses, I'd get him those. But instead of some help for his eyes he needs some help for his brain. That's all. No different than glasses or braces or those sorts of things.

You are a fabulous parent of fabulous boys. Noah is lucky to have you, but, more, Noah is a lucky kid. My oh-so-precocious 7 and a half year old cannot articulate what his 'issues' are at all. Noah can tell you what is wrong, what he needs.

And maybe one day E, and Noah, and lots of other quirky kids like them, maybe one day they'll find that it all comes more naturally, that it's a little easier somehow. Because, sometimes, just sometimes, you don't wear glasses forever.

Karen

I just read your post and I am crying...because (and I wish I had a nickel for every time I type this) I am starring at that word, too. Our boys are seriously, always going through the same thing at the same time.

We had our re-eval through the school system and the psychologist said mild to moderate autism. I held up my binder too. The private eval said no. It said NO. Sensory processing with a side of quirky kid. But, alas that was 3.5 years ago.

And I said to my husband this weekend, "oh, the new DSM" and he blinked and I had to explain it. It is so wide now. It encompasses so much more.

The biggest thing for me was the OT who said he is ADD no sensory. I disagree. I think she just doesn't want to do her job but we too will be looking into medicine, just to see. Maybe it will help?

I hope it helps Noah. I only told you all of this to hopefully, help you to see how much help you give me. We are not alone. Our kids are awesome...the rest will come, with time.

*hugs*

DontBlameTheKids

I have been wondering, because my nephew is possibly autistic, what DSM's changes will actually mean to people affected by the diagnosis. I guess you're going to find out. I know autism was always a shadow on this blog, something you could see from the corner of your eye, but when you turned to look, it's nothing. Will this make things easier, for you, if not for Noah? I hope so.

Erin

I heart you and your family. Just thought you could use some internet love.

Lisa Y

I am an SLP reading your blog on my lunch period before I go to a re-eval meeting. I just wanted to chime in to say don't worry too much about a new eval changing his eligibility. It may be that AU needs to come first to best describe him and to open up services down the road. But this re-eval isn't your one chance for three years. Parents ALWAYS have the right to ask for new evaluation or to bring in outside testing for the school psychologist to review and eligibility is never set in stone. I have always been so glad to hear that you have confidence in your IEP team and I'm sure they'll continue to do what is best for your precious boy!

Jess Z.

Reaching through the computer to hug you, can you feel it? You're strong, but seems like you need a hug today...so here it is. Noah is awesome, and so are his parents.

Dr. Maureen

I've been reading your stuff for years and years; you are one of my very favorite writers. And while this diagnosis obviously shakes you, I know that you and Jason will rally and use it to get Noah what he needs to thrive. Look how much progress he has already made! He's doing so well!

You guys will get through this just like you've gotten through every stage of this so far, with humor and grace and a way to help Noah.

Roberta

I have zero experience with all of this, so you can toss my comments out with any grains of salt you like (Morton's? Kosher?). Anyhow. They are words and boxes to try to contain the unboxable so that you can get the services & assistance that Noah needs. I know the feeling of That Label has got to be so hard. But look at it as a door to let him be the most awesome Noah he can be. He is so amazing, and he's all the things - not just that one label.

JoAnn

Mine is 10. On our third round of therapy for his (ha) "behavioral" problems, I asked our psychologist "do you think he is 'spectrumy?'" About fell off my chair when he vigorously nodded and said "OH YES". You see, nobody ever told me that, either.

We are several months farther along in the process and coming to terms with it. Fortunately, apparently a third of Silicon Valley is on the spectrum and thriving. Another mom sent me to these kids' videos - they have helped me so much to understand, although Noah sounds like he can help you as well. You've done a ton for this mom over the years, and I too have two other NT kids to try not to let fall by the wayside.

http://www.aspergerexperts2.com/

sarah

You are an amazing mom.
I'm a school psych, and RARELY hear a parent who isn't in this profession understand what is going on the way that you do.
You're doing the right things, and if indications point to yes for an Autism eval, a private eval is the way to go. (at least in NC school personnel can't diagnose ASD. They do the same tests, but give an educational classification, which doesn't carry as much weight outside of a school setting).
Best of luck to all of you & way to go with all your documenting and one thing at a time approach.

JP

Oh my goodness. I keep reading here for several reasons, most of them humor related, but the biggest reason is love related. The LOVE that pours out of your fingertips for each of your special, unique, adorable boys is palpable and so real.

Lisa

As you say, he is who he was. Good things to come may be a) you guys have a word to aggregate everything you see b) you get more resources from the powers that be. All my complete stranger love in the world. Thank you for writing. It is always welcome and something to aspire to.

Amy in StL

The smartest person I know is a scientist for the government. He also has Asperger's. He is definitely quirky, but whip smart and he's gotten along fine for 40 plus years. It's just a diagnosis; maybe now you can get help getting a handle on what it means?

Jean

We got the "diagnosis" 3 years ago. To this day, I will never forget sitting in his therapists office with tears running down my face. It was a shock and I felt like that was it, it was over. Then I went home and saw the same sweet, amazing, wonderful boy I had before getting a name for what he was dealing with.

And you are right, the name doesn't matter. Noah is still the awesome, amazing child he has always been. It just gives you a new perspective and some more services and even more ways to help him achieve and be the best Noah he can possibly be. Hope the ADHD meds help, please let us know.

(((HUGS))) from another ASD mom.

Cara

"It doesn't change Noah, of course." Exactly. The word autism is so scary, but (now more than ever) it means any number of things. Noah is still Noah, in all his amazing, quirky, perservering awesomeness.

Wendy

I've been reading along since Noah was a wee baby, and have always assumed he was on the spectrum (and *am* qualified to make that diagnosis), more of a PDD-NOS, which of course falls into the whole ASD category now. And, as someone in the field, I thought collapsing all the diagnoses was ridiculous clinically, because someone with high-functioning Asperger's and low-functioning Autism are worlds apart. However, I have learned to embrace this new diagnosis for what it is; the APA's way of getting the insurance companies to pay for kids like Noah. Kids who are, without a doubt, on the spectrum, but don't fall neatly into one of the categories, so can't access the treatment they need.

So, Noah is still Noah, in all of his extraordinary ways. He will now just have a neat little label so that getting him the services he needs won't be so difficult.

Meg

"... our unconditional acceptance of who he simply is."

This, right here? This is why you are going to be okay. You don't see him as a problem that needs fixing, and Noah already trusts you so much that he's sharing what he sees as his challenges. That's amazing, Mama. Much love to you all from a longtime lurker.

Myriam

You're amazing…

Amanda

The beautiful thing about being a parent is that you can ask for a re-evaluation at any time...if the testing results don't happen before your 90 days are up, request a re-eval when his testing is done.
*Hugs*

Melissa

Another commenter said it oh so eloquently, but I feel compelled to comment here. You are amazing, and yous is the only blog I have been reading regularly since 2006. The love you have for those sweet boys is palpable when we read your words. Thanks for being you, for sharing, and best of luck with this new hurdle. I - along with so many readers - have no doubt you will navigate this with the grace, love, and humor you have used since the beginning.

Kim

Thank you so much for sharing this part of your family's journey with us. Hugs and love to all of you.

Noelle

My son is 10 and he was diagnosed with Asperger's shortly before the new DSM came out. Now he just falls under the umbrella of the spectrum. He also has ADHD. He says the same things to me about his brain not working right and I can see his frustration when trying to work something out. The thing is, I was relieved by his diagnosis, because for years I felt that something was just not "right" with him. He wasn't like the other kids at school and on the playground. HE was relieved when I told him because I think he knew that he was a little different too. Different is not bad. With the diagnosis we were able to get him some OT to help with his fine motor skills, he was able to participate in a social skills group that helps him better interact with peers and with his ADHD diagnosis we were able to address how to better help him with his school work. So he 'd not a social butterfly and probably never will be. I'm hoping he's the next Bill Gates. :) Chin up mama, you're not alone. You can do this. You've BEEN doing this.

nic

noah is so awesome and he has an equally awesome family. whatever this new hurdle brings with it, he's lucky to have y'all in his corner fighting for him and loving him just the way he is.

my son is a little bit younger than noah and i want to thank you for sharing your life (and AWESOME sense of humor...wait...is that one too many awesomes?) and your children with all of us in the interwebs.

alice

Thanks for sharing. My husband recently got diagnosed with autism spectrum disorder an add. It confirms everything we know about him except now it is easier to explain.
Obviously the signs were not there when he grew up, or rather they were viewed differently then?
Anyway. He's managed without a diagnosis until not being able to finish studies, not coping with crowds and social situations etc. Got too much. Like many adults who are diagnosed he first sought help for depression.
My point is, the sooner the better.
All the best, your son is lucky to have you.

alice

Oh I'd just like to add that we don't live in the US, not sure how different the diagnoses are but here autism is very much a scale where you can have more of one thing and less of something else.
Hence it was possible for my husband to be quirky, if you will, and sort of get by.
Sorry I realise this isn't the place for our life story, it's just comforting for me to read about others and so I wanted to say that we're a happy couple despite his diagnosis. Because it's him. And he has his ways. Just like I have my ways. ( Like talking too much. )

Stephanie

Just wanted to say thank you, as always, for sharing your story. You write so beautifully with so much love and humor.

Liz

I've been reading for years but rarely comment. Can you recommend a few books that have helped you understand and deal with the behavior of Noah? I'm in a similar situation and don't want to read books that will say what I want to hear (like what I find in so many parenting books ... pick a flavor!), but will actually help me be a better parent through understanding this all and also how to react to my son's behavior, even if it doesn't fit my current beliefs. Thanks for sharing so much of this part of your life.

Jackie

Another random stranger here. Been reading for years without many comments. But this time, I have to say something. You are a wonderful mom and Noah is a unique, amazing boy. I wish nothing but the best for you and your family.

Suzanne

He is the exact same Noah.

As the mom of one of the rare kids who immediately got an Asperger's diagnosis, your journey with Noah is amazingly typical for kids on the ASD continuum. PDD first, then eventually, as more things become obvious, more diagnoses present, then the appropriate ASD diagnosis is given.

I'm glad you got a Sunday visit-and a doctor who seems to be very compassionate.

Piece of assvice from one who has been there: sometimes, kids on the spectrum don't get the same results out of medications as neurotypical kids.

Case in point: my son was first prescribed Concerta, then Adderall. Both were HORRIBLE for him. He's been on Strattera for about 11 years and it works like a charm. Meanwhile, my other son is on Concerta and it works great for him. (I was placed on Strattera six months ago and I can focus!)

To Liz, who commented above me: books that helped us: Tony Attwood's 'Aspergers Syndrome', Greene's 'The Out of Sync Child', for behavior issues, 1-2-3 Magic helped a bit more, too.

I don't share as much of my son's journey now that he's nearly an adult, but Noah is doing so well because you're focused on helping him, no matter the diagnosis.

Sandra Timmerman

I have two boys at home, Diagnosed with ASS and ADHD.Most of the time I felt that the stories you've written were copies of our live. Autism isn't bad, it's a challenge :-) Always there will be -something that requires action and/or attention. In the end Noah will benefit.
Keep up your good work, your doing a &&*(* good one.

Max

I'm one of those people who has emailed you and thanked you for sharing your story. My boy is a lot like Noah, and holy hell, reading you has helped me more than I can ever express. Good luck with this!

Norma

Hi Amy,

I don't know what to tell you. I was going to say I'm sorry but that sounds so stupid. I'm not sorry Noah is your kid. I think he's awesome. He's honestly my favorite and every time I hear anything good or bad but especially the good, I cry like a baby. I'm always rooting for Noah. I honestly believe he will be great. I've been reading your website for a long time and even though you always hit some rough patches, something always comes along in Noah's life that is so awesome, that I just want to burst with pride. Thank you for letting us into your life. I love these updates. If Noah does have autism I know it won't hold him back. I think you know that too. I'm over here rooting for all of you.

mag

They are all just words...As the mother of a beautiful teenage daughter who just happens to use a wheelchair-and has ADD-just keep loving him, informing yourself, and doing what you can for him. It is so HARD when they realize that not everyone is the SAME and that he is DIFFERENT. He is still the same Noah, only the words have changed. Sometimes those words can be a jolt for the rest of us parents though! You are fantastic parents and advocates for him-Hugs from Minnesota!!

Shawne

Long time reader here too and have been caught up in your journey with Noah. My son was dx'd in kindergarten with ADHD....and at age 9 with Aspergers.. And, after an independent evaluation done outside the school at age 10 due to a disagreement with the district regarding services....officially Aspergers, ADHD combined hyperactive/inattentive, SPD, dysgraphia and dyscalculia. The label won't change Noah.....it sure didn't change Trace...but, boy, it sure did open up a whole host of services not previously available to him. I'm thankful for that.
You're an awesome mom, you got this....and Noah's got you. ❤️

Erin

Hugs, friend. I have also emailed you for advice because I thought my son sounded similar to Noah at a younger age. He's now 4 and I'm pretty sure on the spectrum (my husband mostly disagrees, however); in no way do I wish to minimize Noah's challenges, but I will tell you that if my boy is anything like him in a few years I'll count myself lucky indeed. All the best ~

Kate

Oh, yes. It was casually mentioned at an IEP meeting that the special ed folks thought that maybe my son had ASD. It caught in my throat and I couldn't process it. Which was crazy, because we had been to Drs and had a full neuropsych evaluation, of course we thought it was a possibility. But then we were told no, then yes, then maybe (neuropsych=no, school psychologist=yes, private talky dr=no). I have finally settled on three things (largely from reading your blog, so thank you). 1. If he is so borderline that the results are conflicting, then yes, he is on the spectrum 2. My insurance company understands ASD way better than any other fuzzy diagnosis, 3. No matter what they said in a meeting at 10 am, the boy that got off the bus at 4 pm was the same wonderful boy I put on the bus at 8:45 am. Thank you so much for helping me come to those realizations.

PS I had a great experience at a local neuropsychologist office. If you want the info I would be happy to email it to you.

Springsteen fan

Amy, you have such power in your writing--with just a few words you take me from edge of my seat to amazed at your level-headedness and then teary from the journey and the connection I feel as a reader to you and your beautiful family. Hang in there. Breathe. Be well.

Joe's Mom

I have been a long time reader since you were pregnant with Noah. We were due around the same time, my son Joe was born 10/06/05. I actually found you one night at work when I googled 37 weeks pregnant and it found you. My Joe was Dx with Asperger's/ADHD when hew as 6. I know every says that they know how you feel and I am probably just a repeat of a comment above but well I really do know how you feel. We have been on meds for almost two years and my little dude TELLS me that he prefers the days that he takes it. It has changed his life. He is mainstreamed and doing awesome. I hope you know that we are out here and you have been going through all the things that I have. It has been really interesting to read about Noah and be in the same place. It will be fine, I promise. The ASD label is actually a blessing for us. <3

Mel

I'm so glad you're getting the answers you need and have been so desperately look for...For soooo many years!

Maud

You rock. Noah rocks. (Ezra and Ike and Jason, of course, also rock.) Labels are good, and they are there to help, but they're hard to hear. It sounds like this new categorization will help you get all the things you've had to fight insurance companies for over the years. It's all good.

Purplebreath

:)

M C

Hello Amy:

I've never commented before, but I do have a child who has diagnoses similar to Noah's as well, and I thought you might like to read or listen to this short story: http://escapepod.org/2014/01/25/ep432-inappropriate-behavior/. The protagonist is a child on the spectrum.
Also, just FYI, children like ours often have an easier time with life as their brains mature. Nobody told me that when my child was younger and I think it might have helped me. And, um, I know I'm just a stranger on the internet, but I'm also earning my doctorate in pharmacy, so if you have any questions about noah's medicine or think it might help to talk to another mom who is also a scientist, feel free to email me.

Rebecca Van Hout

Huge hugs! Have 2 on the spectrum of my own. You are a rock star mom and Noah is a very lucky boy. He will be just fine! Mine are almost grown, one in hs and one in college and doing so very well. I have no doubt Noah will thrive too with such a great family. It was hard to accept the label at first but it really is the key to services and he is the same fabulous kid !

Katie

Even if you knew it was coming, it's still a punch in the gut. My adorably quirky almost 2 year old scored high (in the bad sense) on an autism screening tool recently. I knew it was coming, it's not a surprise and yes, we'll need to schedule and evaluation, but seeing it written down (Score: Risk for Autism) practically sucked all my air away. Even if you know it's coming, it's still next to impossible to hear your kid is not perfectly normal.

I'm glad you guys have gotten the help that will get the stuff out of Noah's ears and I hope that this new diagnosis, as shitty as it is to hear and see, opens the door to appropriate services and helps him excel.

Laura

You and Jason clearly love Noah so very much. He's a gorgeous kid, who sounds like a hilarious boy to talk to, and you're staying on top of what will make him as happy as he can be. Deep breaths- you done good.

Robin from Israel

You're already doing so very much right for Noah and for your whole family. May I suggest something for you? Read Jess Wilson's wonderful blog Diary of a Mom. Start with these:

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

http://adiaryofamom.wordpress.com/2012/03/28/d-day/

May Noah and your entire family go from strength to strength. Knowing is just a better way to get him the kind of help that will benefit him most.

Hang in there, and keep breathing. He's still exactly the same wonderful, quirky, loving child you've always know.

Meg

When they first say the word "autism" to you in reference to your baby, it falls right to the bottom of your stomach and sticks there for days.

We were assured over and over that my boy wasn't autistic until all of a sudden one day he was. He was diagnosed earlier than Noah because he's lower-functioning, but I started following your blog back when we were still calling it "SPD" and someone said to me, "Oh, you need to read Amalah!"

All I can say to you is that it's okay to mourn a little bit, to feel anxious, to worry about what this changes. You're not betraying the wonderful child you know you have by doing that. It's a big thing to swallow as a parent.

You're already so good at celebrating his beautiful uniqueness. You're going to rock this autism parent thing and Noah will flourish.

It will get better. It will.

Another one

Yeah, in preschool when the teacher wanted to talk to us about how our daughter wouldn't seek out other kids, she rushed to add, "I don't think she has autism or anything." And for years it was that: There's this (or that) problem, but don't worry, it's not autism.
And then this year she started high school. In a nested Autism Spectrum Disorders program. We had to take her to get assessed (again) and the doctor—the same one who had typed in all caps: NOT ASPERGERS NOT AUTISM on her last evaluation, said, "Oh yeah, this program is perfect for her, because she's on the spectrum." And then it's just so hard to breathe.
It helps (me, anyway) to realize how many of my most wonderful, strange adult friends would have been diagnosed if things ran that way when I was a kid—including me. And it helps, whenever it's too scary, to sit with her and listen to her crazy, wonderful conversation. But it is terrifying, no lie. I wish you all the best, and thank you for being able to write about this. It helps so many of us to read it.

Anontoday

Oh Amalah,
I so get where you are right now. We are in the same place, with a language-delayed sensory-quirky attention-deficit kid who may, finally, fit the ASD diagnosis under DSM-5 when previously had been ruled out under DSM-IV. Part of me doesn't want to go through that again - it is sooo hard on this mama to talk about and watch my kid's deficiencies being highlighted - but another part thinks, maybe it's worth it if we end up with services. And another part is just gobsmacked that here we are, again, after all that's happened.
Thank you for sharing your journey, and sending you thoughts of courage and hope for the future, from one mama to another.

Jessica

You are amazing, your son Noah is amazing. You will conquer. Your Noah will always be Noah no matter what category he is under. Your love and support have gotten him so far and will continue to guide all of you in the right direction. Stay strong, cry and question when you need to and just be you.

Cathy

Sending you and your family love and support.

JGottlieb

My ways are not the world's ways...wow ...that level of abstract thinking places him above his age group..so glad he has you to help navigate a path through the B.S.

Kate

We're sort of sitting in the same place with our not quite 5 year old son. We spent the first few years of his life saying things like "I don't *think* he's autistic" and the Early Intervention eval just before he was 3 bore us out. We've been getting the services he needs (OT for SPD and speech therapy) just coded under developmental delay so it hasn't been an issue up to this point. We've only got a year or so left of that code being an option so I'm pretty sure we're going to have to go after that ASD diagnosis that I'm 99% sure he would qualify for under the new DSM.

Katie Kat

Amy, what a heartbreaking, but beautiful post. It just made me want to hug you... and cry. I know it's been a struggle. I remember every single post. Every single diagnosis, guesses of diagnoses, ups, downs and hopeful moments that it was all figured out. I guess I really just hope you all get some peace at some point, whether that's with the diagnosis of Autism or not. You've done an amazing job. Thanks for letting us all in to ride along and hopefully give some support. <3

Vicki

This is just such a lovely post, Amy, and Noah seems like such a fantastic, smart, insightful kid. I know hearing the word Autism is definitely a shock but he has great parents who continue to fight for him and he is and will always be so, so great.

bessa

Beautiful: It doesn't change Noah, of course. He's the same kid. The same high-functioning, loving, smart, frustrating, awesome kid who has worked so hard already to get where he's at.
You're an amazing mom. Even if it's hard to remember those lines all the time. You're amazing. Great perspective. Great perception. Great job.

Barb

Still the same Noah to me. Love you guys!

AmandaPolson

Getting a diagnosis like that must be at the same time heartbreaking and something of a relief? It doesn't change the person you love, but maybe it can provide a little more insight to how he functions?

I love your writing and really appreciate your sharing your approach to parenting with such honesty and humor. Totally an inspiration.

You probably know this website, but this particular post is by a college friend of mine who is trying to turn his experience with ASD into a career helping others understand the spectrum.

http://www.autismspeaks.org/blog/2014/02/12/my-career-studying-autism-help-others-autism

Jodes

Hey Amy. I've read for years and rarely comment. I'd like to suggest a movie to you (which happens to be made by my brother and feature my nephew but also happens to have won many, many awards given by folks not related to any of us) called Loving Lampposts: Living Autistic. You can get it on iTunes. It shows what a big range the spectrum is and how there are all kinds of wonderful people at all points along it. Best wishes to all of you as you navigate this next part of your journey.

amymarie

No one ever wants to be the one to say it, to tell a parent their child has autism. My experience as a parent who has a child with ADHD and Autism is that I have to say the words first, open the door, and then people will chime in and agree. There is still so much stigma surrounding the word. My daughter has several books I often find in her bed. One is called All Cats Have Asperger's Syndrome and the other is called Inside Asperger's Looking Out. All Dogs Have ADHD is a good one too. It helps them understand and process what they are going through is not just happening to them, but other people as well.

Eli44

As a pre-school director, I work with many service providers (OT,PT, speech) who have told us that when doing early intervention they cannot mention autism or the spectrum to their clients or to us even when they know that a child is on the spectrum because, professionally, only someone in the neuropsych field can diagnosis that. I get why they have this professional understanding but it has been so frustrating when we know that's what parents are worried about (but are often hesitant to bring up) and then ASD becomes the elephant in the room which actual delays the child getting the help s/he needs. I hope the process goes smoothly and without a hitch for you from now on!

Dawn

Whatever other labels the professionals apply to Noah, the biggest, brightest one of all will say 'LUCKY' because he has such wonderful, supportive parents.

Cindy

I will be forever thankful to my Noah's Early Intervention preschool teacher who had the balls to say the word 'Autism' to me after my insisting that I was told he was "clearly not" by the county's psychologist. That was 5 years ago. He's the same kid and it's not a scary word to us AT ALL. Embracing that word is the key to accepting his differences and quirks and celebrating just how cool his brain is. Accepting that label has liberated us. He's Noah and he's Autistic (with a side of ADHD and SPD) and I swear I would not have it any other way.

Meg

Hey,
Something practical-Call the school psych and tell them you're doing the testing, because it IS going to change his category of eligibility, and probably result in an extra meeting, and the poor psych has a deadline etc..etc..so, while your son is obviously your number one priority, I would go ahead and let them know first thing. It's always a good idea to keep the team happy!
I say that as the mom of a quirky kid with an IEP and a sped teacher. Big hugs.

twobusy

In a lot of ways - including the ASD DX and the intricate knowledge of Lord of the Rings - Noah sounds like my son.

Which is to say: great kid. Bright future. And now a complete complement of ammunition to help you get him the support and services to achieve full awesomeness.

Obviously, there's a lot more to it than that... but at the core (and I know I'm not telling you anything you don't know already) that's what matters most.

Lynn

I read this and commented a day or two ago, but I came back to read it again, because I just...Man. I love that your hope and generosity shine through when life, the universe, and everything gets a little harder. Or maybe easier. As you said, you can't possibly know yet. But I love this just the same.

KImtoo

No time to read all the comments, but this echoes Mir's experience with Monkey so much. It's hard to imagine tow moms more involved with their kids, and yet it's still surprising.
But you're right - I think we've all made autism into this horrible dark diagnosis. In no way do I mean to minimize the difficulties, but you're right - Noah is still Noah.
I said not too long ago, but it's worth saying again: you have been a huge help in parenting the child that is in front of me, not the one I have in my head.

keeslermom

Even though I knew it was coming, and was even the one asking for the diagnosis, actually having it in my hand was overwhelming. Welcome to the club!

Tracy

Autism sucks. But my little boy? He is, has always been, and always will be, my precious Robbie.

You have done wonders with your Noah, and you will keep being the great mom he needs. No matter what labels may or may not be in the binder.

Elaine C.

As everyone else commented, hugs and love and cheers of "You Got This." And so the process continues, and Noah is the same awesome kid he was before, and you and Jason are awesome parents and advocates. Thank you for sharing. (Not thank you for shrub. Ha! I win, autocorrect!)

Kara

I shed tears of solidarity with this post. I started to follow you many years ago. I started following because our boys are extremely similar (quirky, brilliant, high functioning, wth are they?). I stayed because nobody can make legos THAT funny!
After many, "He's borderline.", "He's too social.", we got a diagnosis of PDD NOS that seemed to put the school at ease. We just signed our second 504 days ago and my hubby did a double take. At the top, was AUTISM. "It still takes me back, but its for the best." I've been there, and am doing it.... thanks for being brave and talking about it.
www.toengagethemall.blogspot.com

Amelia

I am commenting to show a my support. I been reading you blog for a while. You sound like a terrific mother and I am sure you will find the strength to go through this.

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