An letter to a friend who is having a second child evaluated for a diagnosis…
Dear Friend,
Come here and sit down.
You have a million things to do, I get that. But please. Have a seat.
I know you’re struggling. I do.
I know making that call for an evaluation was hard. Really really hard. You can dismiss it but I know that it took everything you had to do it.
The first time you made that call for your older child it might not have been as tough. Maybe your pediatrician suggested it or maybe the school did. You didn’t know what questions you were going to be asked or how much paperwork you would need to fill out. You didn’t know what the appointments were about or how many people would get involved. All you knew then was that people were telling you something was different about your child.
This time, though, this time you know. You know that it means hours of paperwork and interviews and testing for your little one. You know what they will ask and how they will ask it, looking at every little milestone under a microscope and questioning every detail of your child’s development.
You think you can’t do this again. You think you can’t hear the words again. You think you can’t handle the hours and the logistics and the emotions.
But you can.
I know because I was there too.
It was about 18 months between diagnoses in our house.
It took me so long to pull the trigger on making the appointments for Lewis. I would make the appointment and then cancel. I would stare at the paperwork. I spent so much time looking for “it” – the something that would be my sign that he was on the spectrum or not. He was so different from Howie. Early intervention would come out three times before he was eligible for speech therapy. And in the midst of it all we were working on Howie’s IEP and learning words like PECS and ABA and sensory diet.
The day after Lewis was diagnosed with PDD-NOS, I shared what I friend wrote to me:
“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.”
My friend, I say those words back to you. One kid with a diagnosis is one. Two is two.
You’ve got this.
I can say this now about 15 months after Lewis’ diagnosis.
The teacher meetings are the same. Just times two.
The home therapy that was a part of our life with one is now a part of our life with two.
And our kids are thriving thanks to early intervention, great teachers and an incredible village of friends.
Lewis met almost every goal on his IEP this year. And is meeting every goal in his home therapy.
My friend, I know you can do this. I know what a great parent you are.
Things are different now.
That knowledge that made it so hard to make that phone call in the beginning is now your power.
You know that the journey isn’t so scary.
You know what to do. You know what questions to ask. You know who to call and where to turn and who has your back.
You know this road.
And you know you aren’t on it alone.
(I encourage you to read Welcome to the Club again if you haven’t already. It hits home with one child. But it means even more with two.) “Hold on, to me as we goAs we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be foundJust know you’re not alone
Cause I’m going to make this place your home” – Home by Phillip Phillips
December 11, 2012 at 3:07 pm
To your friend: A lot of us know this feeling. You are soooooo not alone. Hold on to us and put one foot in front of the other as you always have. You will get through it. Breath.
December 11, 2012 at 3:09 pm
amen.
December 11, 2012 at 3:18 pm
Well said.
December 11, 2012 at 3:19 pm
You are an amazing friend to so many. Love you.
December 11, 2012 at 4:26 pm
So beautifully said.
December 11, 2012 at 4:31 pm
Such a perfect post. Just perfect and what a friend you are. xo
December 11, 2012 at 5:09 pm
This was such a tough decision for us, but a necessary one. It’s true what you say – having already had one dx’d, we already knew what to do and we were doing it. But it still was like a punch to the gut when we got that 2nd dx (and the first was for our younger son; the 2nd for our older son – backwards).
For me, what was important was NOT to worry about what time had already passed, or the worry of having 2 on the spectrum. What mattered was that from that moment on, we were committed to helping our son in new and different ways that would hopefully make an impact on his life.
There’s no denying how rough this is, but support from community and from those who have gone before is so valuable and helpful!
December 11, 2012 at 5:20 pm
Amen again. And hugs from a community that understands.
December 11, 2012 at 5:46 pm
A wonderful letter. You are a good friend.
December 11, 2012 at 6:38 pm
You probably didn’t know that today I finally opened the packet that the doctor sent us about a month ago. You know the one. The one I need to fill out for Tommy to see what is going on with him. It took me an entire month just to open it. I am dragging my feet in a way I didn’t do with Danny. I feel like I am underwater with this one, moving in slow motion. But your post really hit home. It brought tears to my eyes and makes me think that maybe, just maybe Bil and I can handle another diagnosis. It’s hard for me to believe, but I know you and I trust you, so I am just going to cling to your words until I really believe them for myself.
December 11, 2012 at 7:44 pm
You can. I know it. You will do what you need to do because you are amazing, caring and their mother. Because that’s what we do.
And here every step of the way. Just like you have been for me.
December 11, 2012 at 7:33 pm
And we’ve got 3. And we’re making it. And you can too.
December 11, 2012 at 7:43 pm
Three is three. ❤ thank you.
December 11, 2012 at 7:39 pm
Your words bring comfort even to those of us with just ONE. It helps to be reminded that, no matter how unbearable it feels, no matter how it feels it will break us…it is, but it won’t. Because we’re not alone on the journey any more. I’m so grateful to have you along. xo
December 11, 2012 at 7:45 pm
Right back at you.
December 11, 2012 at 8:14 pm
Wow. I only have one child on the spectrum but I am constantluly debating having another This post puts things in perspective. Thank you and I agree that you are a great and thoughtful friend.
December 12, 2012 at 2:10 pm
What a great letter; and so inspiring for those parents who may be on the cusp of having another child with autism.
December 16, 2012 at 7:23 pm
I have 3 children on the Spectrum, each different, unique but all beautiful. This is exactly what everybody has been telling me when I received the diagnosis of our 3rd child, and yes, I’ve got this!