“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
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.”
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.”
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.”
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