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.

Never alone

Never 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 go
As 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
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Umi-goggles on! Little Bear? You see Little Bear, saaaaaay LITTLE BEAR!

I made the call.  But this time it was to cancel an appointment, not make one.

The quote above?  From my 2 year old Lewis.  He’s not just talking now.  He’s speaking, having conversations, and using lines from TV shows and making them his own.  This spontaneous phrase combined a line from the Nick Jr. show “Team Umizoomi” with a picture from his Little Bear toothpaste container.  He put his arms up to his eyes for the goggles, and tried to look for his toothpaste.

The canceled appointment?  His scheduled meeting with the zero-to-three developmental clinic for an autism evaluation.

The appointment had been recommended to us by Howie’s developmental pediatrician when I expressed concerns about Lewis’ language delay.  Remember her?  She’s the one that called me “Super Mom“.  At the time the appointment seemed like the fastest way in to see a speech/language pathologist, but she also mentioned that a full evaluation would be a good idea, considering Howie’s diagnosis.

It took me a long time to send in the paperwork.  I couldn’t put Lewis’ picture on the forms.  I couldn’t go through it all again.

But I finally put the package in the mail.  Without the picture.  And two weeks later I received the appointment date and time.  March 21st.

In the time since I mailed the papers, we’ve seen an explosion of language and development.  And now, I see none of the red flags of autism.  None.

I see pretend play as he zooms a car around the house and makes rumbling noises, or pours me a cup of pretend tea.  I see the ability to follow first/then commands and multi-step directions when I ask him to get his shoes, bring them to me, and then we’ll go outside.  I see tantrums caused by his inability to have a toy rather than meltdowns triggered by his inability to control his body.  I see him look me in the eye when we talk and I feel him hug me out of love.  I see an understanding of emotions when he draws a happy face and labels it “happy!”.

Yes, he’s drawing.  Recognizable faces.  And he can make the letter “L”.  From following my instructions.

All the “appropriate” developmental milestones for a two year old.  That’s what we’re seeing now.

I’m trying so hard to focus on how wonderful that is, and not that we’re still working on many of those milestones with Howie.  Our almost five year old.  They are almost evenly matched now in the social development area.  That’s still hard to face.  Because it won’t be long before Lewis moves ahead of Howie in many areas.  And then where will we be?

Mom! Mom! Get coat and go Kyle’s house!

This was yesterday.  Lewis grabbed his coat and handed it to me, asking to go to his friend’s house.  I was bursting with pride.  How could I say no?  He and I now have conversations, share cups of “hot toffee (coffee)”, read books and sing along to Glee together.  The articulation isn’t quite there yet, so I’m still going to have early intervention back when he’s 30 months old, just to make sure he’s on track for his age.  Just because I can understand him doesn’t mean the rest of the world can.

Right now, though, I’ll take it.  It was so different from where we were a year ago with him.  That’s why I canceled the appointment.

Last month, I wrote a post called Mother’s Intuition about learning to trust your gut when something’s wrong with your child.  I’m using my mother’s intuition again.  This time, however, it’s to say that everything is going to be okay.

I may be wrong.  But my eyes are wide open and I will be looking for any and every sign along the way.  And if I see something that makes me nervous, I know I’ll have the strength to trust my gut and make the call once again.

Two Boys in a Snack Tent

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.” – I Can See Clearly Now by Johnny Nash