The More You Know

by statia on April 21, 2010

There are days that change your life.  Falling in love, getting married (or god forbid, getting divorced), having a baby, or experiencing the death of a loved one.   It’s unfortunate that those days aren’t limited to just good things, but I don’t liken it to life not being fair, rather life balancing itself out.

I woke up today, not really thinking that life would change all that much for me.  Even knowing what lay ahead of me.   I wasn’t really all that nervous at the start of it.   But as the day wore on, I started to get a few flutters.   And as we sped down the highway, I felt as if the weight of where we were going, could change my entire life in a matter of seconds.

And as we waited, I began to get nervous.   I just wanted to get it over with.   Surely, it doesn’t change anything.  Things will still be the same.

But there it was, a paper handed to me.  I scanned the page, and the words stood out amongst the sea of letters, staring up at me:

ADOS Impression: Autism Spectrum Disorder

Diagnosis: Pervasive Developmental Disorder-NOS.

I’ve toyed with this for such a long time.  His teachers went back and forth with me, maybe he is.  Maybe he isn’t.  He had good days and bad, but the speech, oh the speech.  It was one of those things that he’s had so much trouble mastering.  He’s got great language, but the speech.  I feel like I’ve written about it a hundred times.

I put off getting a diagnosis, partly because we already had services in place and they did so well for him, and did right by our family.   But I had to go through a grieving process before I made an appointment.  I had to be OK with who he was.  Getting a diganosis for us, wasn’t going to change him as a person.  It was more for our own knowledge and for closure.

And, as it turns out, it’s not closure, but just the beginning.   New doors are suddenly opening for us.  Help for him is available that we never would have had without this simple, piece of paper with the words “Autism” and “PDD” on it.  It certainly doesn’t change who he is.   He’s not a different person, but now, things will be different for him.  Things will be better for him.  With the right therapy, he’ll have a chance to “outgrow” his disorder and have a chance at “normal” life.  But that’s not what this is about.  This is about empowerment.  We left that office feeling empowered, because not only will he receive the help he needs, but he’ll grow up being aware of his differences, and learn to cope with them.   Maybe it’ll be a little easier to figure out his way in this world.  It’ll help him understand how to cope with what he was given, and not to let it dictate his life, rather, let him dictate how it’s going to help him go far in life.

Sure, right now, we’re helping him, but really, we’re just along for the ride.


donna April 21, 2010 at 8:34 pm

I don’t know what to say. I’m glad that the help is out there and that this has opened those doors for you. I’m just sorry that you all need it. Love you.

Yo-yo Mama April 21, 2010 at 9:14 pm

As you alluded to, this is definitely his journey from here on out. You may not necessarily know what path he’ll choose but having that goal is a major step forward. That being said, it’s obvious you got his back and he will always know that.

btss April 22, 2010 at 2:15 am

I think your perspective and approach is absolutely wonderful. I think empowerment is an incredible force. I keep thinking of Dr. Seuss’ “Oh! The Places You Will Go.” I think you’re headed for one hell of a ride, but I think it’s a ride you’ll enjoy. I’m crossing my fingers for you. :)

Betty M April 22, 2010 at 2:50 am

Extra doors opening and extra help are all good – I’m happy that you have this for him.

Veronica April 22, 2010 at 5:30 am

That’s how it feels here too with the EDS. Words on paper are heartbreaking, but the doors opening, that’s just priceless help.

Shelly April 22, 2010 at 7:17 am

Empowerment is a wonderful thing. I wish you all the best on your journey.

Shanna April 22, 2010 at 7:35 am

I’m so sorry you had to get that paper with those words, but you seem to have the best possible attitude toward this. I am so glad you feel empowered and that the Mini is going to get all the help he needs.

electriclady April 22, 2010 at 9:42 am

I’m glad that those words on that paper, as much as you didn’t want to see them, will help open doors for the Mini. And you are one tough mama–you will see him through whatever he needs.

Tommie April 22, 2010 at 1:18 pm

We didn’t push for a diagnosis of our developmentally delayed daughter until she was two years old and still not walking. I will admit to a bit of anxiety when we were on our way to the developmental pediatrician’s office for the meeting about the diagnosis but the relief I felt when I heard that she has 5p- Syndrome, a genetic disorder that she won’t outgrow but that she can overcome, was palpable. We had an answer. We had a place to start from and yes, there are a lot of resources out there once you have a diagnosis.
Good for you for knowing that this is a place to start, a journey for your son and that you’re along for the ride.

Shannon April 22, 2010 at 2:16 pm

I also don’t know what to say, but love how much happier you sound at the end.

Love you, babe.

Aunt Becky April 22, 2010 at 4:32 pm

You’ll be just fine. I’m so glad you’re getting the help you need. I’m here if you need me.

mrs spock April 22, 2010 at 4:40 pm

As scary as those words are, knowing that there is help to be found must be a relief.

Kendra April 22, 2010 at 5:50 pm

Oh, fuck. It’s a relief and one hell of a punch in the gut all at once isn’t it? I briefly starting chatting with you a while back, only to fall of the face of the earth when I got the exact same news exactly two months ago to the day. I feel for you. Email if you want to compare notes. Or vent. What ever.

K April 22, 2010 at 10:38 pm

I’m sorry that you have to deal with this but you sound like you have a wonderful perspective. Thinking of you.


Tracy April 22, 2010 at 10:52 pm

You know, at one point, I think an autism diagnosis could have been such a crushing blow…but now…I’m thinking of the autistic kids I know or know of…and sadly, it’s quite a few…the range of abilities they have is spectacularly broad. A friend’s son was basically completely non-verbal and unable to communicate. At 10 the only thing he still “eats” on a regular basis are dietary shakes, because they couldn’t get him to chew food. Contrasting that, another friend’s son has some trouble interacting with people, and couldn’t be in a mainstream school program because they didn’t know how to educate him – but he learned..or knew?…french FLUENTLY without barely even studying it. He’s a math wiz, goes through books like you wouldn’t believe. He doesn’t deal well with people he doesn’t know, but his brain works in amazing ways.

There was a special on HBO the other day about new education methods for autistic kids. It was pretty interesting, as they covered different ways of educating kids with autism.

jennyalice April 23, 2010 at 1:25 am

“We left that office feeling empowered…”
I am so happy for you. I know that weird joy of being handed a diagnosis that is so huge, even when you already know, right? we knew…

I think there is a very strong power in naming things. And, it is way easier to say “autism” when explaining to grandparents :)

Best to you.

Lisa April 23, 2010 at 8:51 am

I’m so glad you’re feeling empowered and hopeful. That seems more like the you I’ve met. Sending love to your family.

Kristi April 23, 2010 at 10:10 am

Prayers for your families road ahead.

Chickenpig April 23, 2010 at 12:51 pm

I have been dreading my son’s appointment on May 5th. I could have written this post. N was right on target, or ahead, at all his doctor’s visits, even his speech. But now? Oh his speech! On his good days he’s great…but on his bad days…well, you know how it is. Your post has such a positive and hopeful feel to it. I don’t want this label for my son, but maybe, just maybe, the label I’ve been dreading isn’t a box, but a door. Thank you.

PiquantMolly April 23, 2010 at 2:10 pm

Well, now you know. Onwards and upwards from here, lady.

Kath April 24, 2010 at 3:39 pm

Dear Statia, I was sad to read of the diagnosis, but happy to know that the Mini will get the best kind of help this way. Sending my love.

ewe_are_here April 24, 2010 at 4:17 pm

He’s lucky he has you in his corner … your attitude and perspective is amazing.

Meredith April 25, 2010 at 6:23 am

Although you told us about your suspicions and fears– and sought help– and long time ago, I still manage to find myself shocked to hear a label put on it. I think that part of that shock is because I feel a special connection to y’all what with Finn being born on the same day as the Mini. As I watch my boy grow and develop, and read about the stressful issues that you are encountering, I really have a “There but for the grace of…oh, I’m an atheist” sort of reaction. I hope that I would deal with it half as well as you– your energy, determination, and love shine through in every entry. But I still hoe it’s okay to wish that you and the Mini didn’t have to go through this at all. Anyway, you are right that doors are opening and that things will be better for him. And that’s in no small part due to having you on his side.

Old School/ New School Mom April 25, 2010 at 9:17 am

You are an amazing mom! Just please know that. You clearly love mini so so much, the way that you write about him. Whatever comes his way, you will be there for him. And, though it’s nice to have a diagnosis, he’s a person, regardless! I know what you mean about this being just the beginning and not having closure. You are clearly educating yourself on the matter which is more than a lot of parents do! Think about people who are in denial, you know?

jesser April 28, 2010 at 11:19 am

I can only imagine how this must feel … I am sure it is terribly hard to go through, but I am sure knowing is better. I am amazed how awesome you’ve been, battling all of this head-on with such bravado. You do it all to the n-th degree for your little guy and he is SO lucky! I have no doubts the future is full of amazing things for him.

motel manager May 5, 2010 at 9:51 pm

I haven’t been in blogland in forever and just came to check in on you and saw this. It must have been a shock, even though, you know, you’d been so on top of this, too. You are really amazing. I’m glad doors are opening for you and that they lead to great help.

thalia July 6, 2010 at 4:52 pm

Well, I can see how it’s both a blessing and a curse, to finally have this diagnosis. It does prove to me, yet again, how well you know your son, how early you spotted this. I am glad he will have lots of services available to him. Do you know Day at ‘A beautiful day’? Her son was diagnosed with PDD-NOS about a year ago and has done very well with the help he has received. I think the diagnosis might have changed, now. But anyway, might be worth a read.

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