“You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.” From Welcome to the Club, 2009. For my dear friend, A and anyone who else needs to hear it today. – Diary of A Mom’s Facebook status. August 8, 2011
**********
Breathe…
At 8:30am yesterday morning, I sat in a small evaluation room at the Center for Special Needs for Children at Tufts Floating Hospital. The doctor had some papers for me to sign before our appointment began, and she handed me a pen and a blue folder to lean on.
I recognized the folder right away. It was the same one I was handed on December 22, 2009. The day Howie was diagnosed.
The Autism Packet.
“Based on the autism diagnostic tests we did last week and our interactions with him, we’re giving Lewis a diagnosis of PDD-NOS. He’s on the mild end of the spectrum. I can see how early intervention could have checked off all the boxes. But when you dig deeper into his play skills, his social pragmatics delay…there’s a lot of deficiencies. He’s a kid that will fall through the cracks. You’re really going to have to advocate for him.”
**********
Still breathing…
In the hallway, with my packet and preliminary diagnosis letter in hand, I send out a bunch of texts to some friends. “They gave him a PDD-NOS diagnosis.”
Words of love and support flooded back in short phrases of 140 characters or less. “Nothing is different than it was yesterday.” and “Full hug today. Take the time you need. Call if you want. You can do this.” and “You ok? He will thrive at our preschool” and “Dammit.”
**********
Barely breathing…
I am angry. Not at the diagnosis. Not at the label. At me. And the whole process. I’m reeling because I didn’t see the labeling. I tell my friends that “the doctor says he has inconsistent behavior and speech. Not the ‘right’ play skills. An inability to transfer knowledge from different circumstances (i.e. he can make me a Lego birthday cake at home but can’t play birthday party with a play-doh one). Scripted language and direction. “
I tell them that I’m kicking myself for canceling this appointment back in March, when we could have had spring and summer therapy time. And for kidding myself that it was just an articulation delay and nothing else.
I say that I’m beating myself up, thinking that if I had spent less time on facebook or blogging, I’d have spent more time on the floor playing with him, and not leaving it up to his brothers to play. Learning their behaviors. But I HATE playing sometimes. I am tired of it.
I write that I know this doesn’t change my son. But it changes me as a mother. I’m questioning everything now.
“Stop.” “You are doing and have done everything in your power to make things good for your children.” “You have loved him and seen HIM- not the things that fall under some check-off list.”
“One on the spectrum is one. Two is two. I get that this is a watershed moment. But you know what to do now. You’re already doing it; it’s just a little more weight in your pack. You’ve got this. And you’ve got us.”
**********
Breathing again…
It’s a new day today. I’m listening to Lewis laugh and play with his speech therapist. As I sip my coffee, I think back to the hallway at Tufts Floating Hospital. The office for pediatric oncology is right next to the Center for Children with Special Needs. I’m reminded that my kids are healthy. This is not a death sentence diagnosis. I have been here before. This time, I know what I’m doing. But now, I have my club to help me.
**********
Welcome To The Club was one of the first things I ever read after Howie’s diagnosis. At the time, I didn’t understand how important this club would become. The people I have met during this journey have been my lifeline. They understand my jokes and my pain. They don’t judge, they only listen. I felt every single one of them in that room with me on diagnosis day. They are the reason that I am breathing freely today.
I am a card carrying member of this club two times over now. I can’t think of a better group to travel with.
“I move on holding on to what I learn, it’s time to let go of the notion
That the whole world’s against me
Break free of shackles that formed young, time free in now
And now I know, it’s not all up to me, I can count on another
So move on lighter and be free ….
’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
And so this moment, I just have to sing out loud
And say I love I like and breathe in now
And say I love I live and breathe in now ” – Breathe In Now by George
Try Defying Gravity 
August 9, 2011 at 1:35 pm
Darling Girl,
I can only imagine what you are going through but I love you and I will tequila you and brownie you on demand.
You can do it. i have faith in you.
Love you,
Jersey.
August 9, 2011 at 1:38 pm
Won’t you please be my neighbor on autism street? Love you too. Will hold you to the tequila and brownie offer.
August 9, 2011 at 1:41 pm
At the risk of saying the wrong thing, all I will say is I’m here however you need me to be. Your babies have a strong mama. Xo
August 9, 2011 at 1:47 pm
on what planet would you ever say the wrong thing?
August 9, 2011 at 1:50 pm
I am of the ‘Seriously?!’ variety… but when the breathing returns to normal and the dust has settled, my Dear – I KNOW your boy is on to better and brighter with this news. I KNOW because you are the most amazing kind of mother – loving to no end, generous, humorous, thoughtful, honest. I KNOW your boy is blessed to have such a mother who WILL fight for everything he needs, tirelessly, asking for help along the way from your community who loves you, and cheering him on with every victory.
I hold you and your family in my heart and prayers always and I KNOW brighter days and amazing accomplishments await.
xo
Love you,
Rachel
August 9, 2011 at 2:10 pm
my dear friend Rachel…thank you. Love you too. Your words help every day.
August 9, 2011 at 1:59 pm
Well, hell. I’m so sorry. For the diagnosis, for the label, for you. For the whole process. For your oldest. For falling through the cracks. I’m sorry.
August 9, 2011 at 2:10 pm
thank you 🙂
August 9, 2011 at 2:10 pm
Having two hole punches on that card is sometimes rough, but, well, having a card in the first place is sometimes rough. My experience is a bit different as we received our diagnosis for both within a few weeks of each other, but we knew in our hearts long before that so we were prepared…sorta.
You will keep breathing. You will keep putting one foot in front of the other, sometimes going back a step and doing it again. You will keep being the same great mama to the same great kids. One breath, one moment at a time and finding support at the club all along the way. (((hugs)))
August 9, 2011 at 2:20 pm
Thank you Kelly. That means a lot since I know you’ve been there. I’m lucky to have you and everyone else here as part of that club.
August 9, 2011 at 2:25 pm
Wish I could be there to breathe with you, cry with you, and take over the playing when it gets too hard. Lewis, Howie and Gerry have the most amazing mom, even when she doesn’t feel like it. So proud to be in your club, my friend, though I wish it could be different. African stormtrooper hugs, and all the love in the world.
August 9, 2011 at 2:40 pm
How I have missed you!!! Thank you. Wish you were here too 🙂
August 9, 2011 at 2:43 pm
oh, miss alysia… you and your boys (all four!) are in my heart and my prayers. you are an amazing mama and like you told me just days ago, we’ll do this together. love you!!!
August 10, 2011 at 1:29 pm
We will do this together is right. Our kids are amazing and special, there’s no doubt about that. And soon, we will have that quiet coffee together.
August 9, 2011 at 3:28 pm
I’m so sorry for your pain. I wish there were words…but you are right. Your sweet boy is the same as he was yesterday. Now you just have the key you need to open the door to services that might help. And as that infamous author of ‘welcome to the club’ told me not long ago. ‘no more beating yourself up, you hear mama? Save the self flagellation for the monks’. You are a great mom! You are doing everything right.
August 10, 2011 at 1:30 pm
That Diary of A Mom is one smart woman as are you! 🙂 Thank you for the words of support through this.
August 9, 2011 at 3:52 pm
You’ve done it once, you can do it a second time even better. Think of how much you have learned since the original diagnosis. Just keep being the loving supportive Mom that you are and remember to breathe. HUGS.
August 10, 2011 at 1:31 pm
I am breathing. Thank you so much for all your comments and words of support. So happy to have you in my corner.
August 9, 2011 at 4:01 pm
love you darling Alysia
you will get through this
And from the stories of your little one its easy to see how it may have gone unnoticed
August 10, 2011 at 1:31 pm
Thank you, my dear friend. Your words mean so much.
August 9, 2011 at 4:15 pm
Alysia, I feel this pain all too well. As you know both of my girls were diagnosed with PDD NOS and within 3 months of each other. Don’t beat yourself up about anything, you are doing great. I’m here if you ever want to talk/vent about anything!
August 10, 2011 at 1:32 pm
I know you’ve been through this too recently. Thank you. Looking forward to seeing you soon.
August 9, 2011 at 4:17 pm
You know we are only a mouse-click, a phone call away. Like Sassy said to you yesterday (or this morning?) you’ve got this. And we’ve got you, babe. xoxo
August 10, 2011 at 1:33 pm
Lost without you, my friend. Thank you for everything.
August 9, 2011 at 5:21 pm
Beannacht
(“Blessing”)
On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.
~ John O’Donohue ~
Dear Alysia,
may these words hold you as you travel this valley on your journey. You are one of my inspirations, I will say to you what one of my dearest friends said to me upon Perky’s diagnosis – your children are so lucky to have you as their mother.
One more thing for now – this time from Stephanie Dowrick – you ARE enough. You are brave enough, loving enough, committed enough, patient enough, whatever your self-doubt, counter it with this – YOU ARE ENOUGH. You are enough Alysia.
PS I love George, Katie Noonan is breathtaking live!
August 10, 2011 at 1:34 pm
You’ve seen her live? WOW!
and thank you. You’ve been a constant support through everything. Wish you weren’t on the other side of the world.
August 9, 2011 at 5:51 pm
Alysia,
It is so easy to miss the ones who seem to be functioning no matter how many signs there are. We missed them for ten years. You know what to do already and that is half the battle. You are a wonderful mom and guilt is a waste of time trust me; I’ve experienced enough of it to know.
August 10, 2011 at 1:34 pm
Thank you so much. With all of you, I’ve got this.
August 9, 2011 at 6:25 pm
Oh, Alysia, I cried as I read this. This is just so difficult for all the reasons you list. I guess I feel like I can relate, because lately I have been seriously wondering about my youngest. Many little things niggle at the corners of my mind, but then he does something that comforts me, so I let it go. I have no idea anymore what’s going on, and that is so disconcerting. I thought since Danny’s diagnosis, I would just know, but apparently these kids? They are all so maddeningly different. Gotta keep us jumping and wondering.
Anyway, I’m here if you need to talk–just an email away….
August 10, 2011 at 1:36 pm
So maddeningly different. That is the BEST description ever. That’s exactly the hard part – and the best part – of all of this. There’s no mold, no manual. Makes us question everything.
Knowing that you’re there means so much. From the first day, you’ve been there for me. I thank you so much for that.
August 9, 2011 at 7:19 pm
I could write something here that is cliche, that you already know, like how strong you are – how great of a mom you are – how you know what to do – how this time will be different – because they are all true, but the reality is that having two kids on the spectrum is different. Harder. Scarier.
Own this moment. It is OK to feel what you are feeling. This is different than last time because you already belong to the club, and you have the tools. But the process will be different – not less difficult – but different because each child is so unique.
I emailed you this quote last week, “You never get good at grief. Just because you have done it often doesn’t make you good at it,” and it applies just as much to this situation as mine. So don’t blame yourself, because YOU are an amazing woman, mother, wife, friend and person – your son is going to get everything he needs because of you, and March vs. August doesn’t change that.
Hang in there my friend – you have been there for me in more ways than I can count these last few months, and I am here for you – any time – and in anyway I can be.
XOXO,
Hartley
August 10, 2011 at 1:38 pm
Well, you’ve managed to make me cry. You’ve been here for me from the very start with diagnosis #1, and I don’t know where I’d be now without your guidance and friendship. Thank you for everything you’ve done for me. Glad we’re in each other’s corners for sure.
August 9, 2011 at 7:43 pm
So so sorry to hear your news, since I know it’s a big blow. We are currently expecting #2 and I swear I’m already worrying about another autism diagnosis even though I’m only in my 1st trimester. I think we assume it’ll be easy to see the 2nd time around… but I have no clue how it will go this time. I just want someone to give me a diagnosis at birth so I know what’s coming, you know? I want to have someone who’s not me watching them every second of every day to look for the signs I may not be able to see.
The beginning is hard. At least we already know this. And we know it gets better and easier. And we already have our friends. 🙂
August 9, 2011 at 7:51 pm
I am just reading this and I will hold you and the family in prayer this evening. Much love and support to you always. We all stand with you Alyssa, all of us.
August 9, 2011 at 8:02 pm
All I can offer at this point is (((HUGS))). I’m right there with you. We knew, but we got official dx last week that our younger child is not only also on the spectrum, but at the opposite end of his Aspie brother. Total gut kick. I’m just now coming out of the gut kick phase.
August 9, 2011 at 8:06 pm
I don’t know you personally, but in reading your blog – I know exactly how you are feeling. It doesn’t get easier and there’s nothing we can do to prepare ourselves. And as much as we tell other parents “it’s okay” and “no big deal” – it is a big deal.
But this its different. Now, you know what to do. You have the support. And in time, it will be okay.
Don’t blame yourself – you are doing the very best you can.
BIG HUGS!!
August 9, 2011 at 8:10 pm
((Holding you in a hug)) for as long as you need it. You don’t have to pretend to be fine or to be a supermom … with any of us.
August 9, 2011 at 8:18 pm
love to you, brave mama, and your beautiful boys.
with you.
August 9, 2011 at 8:42 pm
Sweet friend, please know that your boys have been blessed to have such an awesome Mom.
Don’t worry about cancelling the March appt – it is al ancient history and it’s only up from here. Lewis is in wonderful company.
Blessing to you and your sweet boys.
xxx
August 9, 2011 at 8:53 pm
You can do this! You are an outstanding mom, wife and one of the strongest ladies I know. Don’t you dare crumble because you are my inspiration.
Now saying that, go get yourself a nice huge cup of Dunkin Donuts coffee, I mean the largest they have b/c I am not drinking it anymore and you need to taste it for me!
Just know that if you ever need another person to listen to that I am here for you!
August 10, 2011 at 8:13 am
Alysia – You are a brave and inspiring mom. DO NOT beat yourself up on this!
I know that you are going to do everything your boys need and then some and they are going to be incredible, intelligent, independent men because of you.
I’m here for you, my friend — whatever I can do to help.((hugs))
August 10, 2011 at 1:38 pm
I’m sorry that you are so hard on yourself, but I know how easy it is to do that. All my good thoughts are with you and Lewis. It will be OK. He will be better than OK. And so will you.
August 14, 2011 at 10:36 pm
Thank you. So glad to have you as a friend.
August 10, 2011 at 5:16 pm
[…] It is either already or almost Thursday in much of the world so instead of Wordless Wednesday I share this post inspired by Breathe In Now « Try Defying Gravity. […]
August 10, 2011 at 5:39 pm
Your post inspired me to write my own, so if you have time come over to view it later. I hope things continue to improve at your house. I know you already are doing so many things right. Hugs and prayers to you and your family.
August 14, 2011 at 10:36 pm
Thank you. I read your post and I so appreciate your words of support and advice. Thank you Sue.
August 10, 2011 at 5:40 pm
“You will really have to advocate for him” I think is so true. It wasn’t until the birth of my daughter with severe disabilities that I got the doctors and school personnel to take me seriously about my concerns for my son. He was diagnosed with Aspergers at age 15. Completely missed out on early intervention -any intervention – and was harshly judged for most of his childhood. Because he was so “normal”. None of us knew. He has gone thru so many, many struggles. Now he is 21 and has finally found a job he loves (and has stuck to for over a year!), loading trucks overnight for UPS. I would say you are doing what is needed and your boy is fortunate to have you for a mom! It’s not the cards you’ve been dealt, but how you play them.
August 14, 2011 at 10:35 pm
Thank you Kate. This is an inspiring story for me. I’m sorry that it took so long for the doctors and school to take you seriously, but I’m glad you pushed on.
August 14, 2011 at 4:16 pm
Huge Hugs to you Alysia. I know it’s hard and please forgive me when i say congrats on going through and getting a diagnosis for Lewis. Doesn’t matter that you delayed…you ahve it now and that’s his best chance for going forward. I cancelled an appointment for my WiiBoy too…after fighting for people to listen to me. i wasted a whole year. But look where we are now?! He started with a diagnosis of ASD at age 4 and now has one of PDD nOs from age 8!
(ps.. my latest post just might be of interest to you;-)
xx jazzy
August 14, 2011 at 10:34 pm
Thank you my friend. I appreciate this. I didn’t know you waited too! You know I look to your posts for inspiration on how things will be for us here. I’m off to read your blog (I’m SO far behind on blog reading!!!)
August 14, 2011 at 8:02 pm
As a neighbor of your “Autism Street” I too have lived the denial. I chose to not use the “A” word for several years and reprimanded several school administrators that used the “A” word so carelessly. I refused to enroll my peanut into an early intervention preschool at 3 years because I was so very afraid that she would be “that kid” in the back of the room. I signed an IEP that provided 20 mins of speech therapy a week for my non-verbal 3 1/2 year old. (seriously? 20 mins?) I allowed an osteopathic “doctor” to experiment on my daughter. I was promised she would no longer qualify for the “A” word.
My baby is now 13. She is not autistic. She has autism. It is just a piece of her puzzle that makes her whole.
You can do this! You have come this far and with a whole lot less knowledge the first time! Please know how many are out there keeping you in our prayers and holding you in our hearts.
xoxo!
Becky
August 14, 2011 at 10:33 pm
Thank you Becky. So much. For sharing your honesty here with me. I appreciate it like you wouldn’t believe, and proud to be your neighbor on “autism street”.
August 14, 2011 at 11:48 pm
[…] When I wrote this, I didn’t know that the child diagnosed yesterday would be my own. […]
August 15, 2011 at 1:16 am
just came over the wire. something for you to read, http://www.npr.org/blogs/health/2011/08/15/139587398/younger-siblings-of-autistic-kids-their-risk-greater-than-thought?ft=1&f=1001&sc=tw&utm_source=twitterfeed&utm_medium=twitter
August 16, 2011 at 1:40 pm
Thank you. I saw it. It helps.
August 15, 2011 at 6:22 pm
Hey, sweet thing. Love to you, okay? Feel what you need to feel, but know that you are so good at parenting your kids. xox
August 16, 2011 at 1:39 pm
Right.Back.At.You 🙂
August 16, 2011 at 10:06 pm
Hi – I found your blog via another fellow blogger at SPD Blogger Network. What a beautifully-written post to read. My daughter is not on the spectrum, but she does have SPD, and I can relate so much to your reaction to your son’s diagnosis. It’s an unenviable spot to be in to be a “pro” at what you are going through, but what a strange gift it is to your son that you have already been here once before. If there is anyone who can do this, I am certain that you can. I will be following your story and look forward to getting to know each other better! Best of luck on this new road your family is on…
August 17, 2011 at 6:44 am
Thank you so very much for coming over from the SPDBN. I’m glad you’re here with me.
October 6, 2011 at 1:03 pm
[…] In June, two word sentences were hard to understand. He could label, but not complete phrases. Many consonant sounds were missing. No subject-verb configurations. And as their sessions went on, other things became apparent. Limited play skills. No eye contact. Difficulty maintaining attention. That all brought us to August and our developmental evaluation and the eventual PDD-NOS diagnosis. […]
December 11, 2012 at 3:01 pm
[…] The day after Lewis was diagnosed with PDD-NOS, I shared what I friend wrote to me: […]