Newly Diagnosed?

I was recently contacted by a parent whose 15 month old has delays, but is yet undiagnosed.  Dad is beginning to realize that his child might never 'catch up' and may actually have a life-long diagnosis that he will have to cope with for the remainder of his natural life.  He asked if I had any tips from when I went through this, here's what I told him:

First things first, no matter what happens, you and A are both going to get through things together.

Ok, so this is a big momentous and unhappy place you've come to.  I certainly hope beyond hope that A does not have a major diagnosis behind things, but in truth he might.  I had in my mind that something might be wrong with Moose early on, and I never felt the settled feeling that my husband did when the tests came back one by one as ok.  I remember the phone call getting  Moose's diagnosis as clear as if it happened 10 minutes ago.  I was absolutely devastated, but part of me knew that 'it' was 'something' and that part of me was relieved that 'something' had a name.  In my mind, if it had a name, then there were people who knew about it and I could find them and they would help me.  I cried for about an hour straight, and then I got on the phone with the National Fragile X Foundation.  Within two days I had a working understanding of the diagnosis, had registered for a Fragile X seminar and booked my travel, and gotten the names of the key researchers and practitioners in the Fragile X field.  Basically, I had begun to put on my battle armor, but knowing the name of what was wrong was key to doing this.

I say this not because where you are is an easy place.  It isn't.  In any way.  It's a horrifying place.  It's the exact place that every parent since the dawn of time has prayed that they won't ever have to go.  It's a scary place and I've been there too.

AND

You've gotta feel this thing you're feeling right now.  You have to start to sort out that what ever is going on with A may be more than you thought, and may be more than you think you can handle.  That realization will help you own the place you need to move towards, which is that no matter what, you and A are in it together and you will do what it takes.  There may be a lot of really shitty things you have to go through.  I really hope that you don't, but you might.  A might have a life long disability.  He might not.  You don't know.  Not knowing is actually one of the worst things in the whole world.

Ok, so my advice, for what it's worth, is to completely fucking freak out.  Give yourself like a solid hour or two to be really freaked out, and totally flesh that feeling out, and cry with your wife, and stare at pictures of the twins when they were born and rage about the loss of innocence and normalness you're supposed to be feeling, and drink a stiff scotch, and wallow.  It is really healthy to let yourself be totally freaked the hell out about something this big and scary.  Then, take a deep breath, or whatever it is you do to get on your game face, and turn the page on your life.

Here's where you go.  When you reach this place that you're in, it is really easy and tempting to get bogged down and overwhelmed with everything that's changing.  So much change, so much unknown, so much worry, and what will happen, and how will he be, and how will people treat him, and how will you explain it to friends and family, and how will you pay for it, and on and on and on... game face.  The core of your mission in life has not changed.  The core of your mission in life, now that you're a parent, is that your primary purpose in the world is to help your children be the very best versions of themselves that they are capable of.  Nothing about that has changed.  Nothing.  A is going to turn out to be whomever he was always going to be.  Your job is to help him be the best version of that.  What it looks like may change.  How you get there may change (if we're honest, it was never going to look the way we pictured... hello infertility, twin pregnancy, prematurity... this has already been headed in the 'not ideal' direction).  No matter how it unfolds, A is still your sweet little precious one, and you are still his papa, and you two are in this thing for keeps no matter what.

That's what I've got for you right now.  Special needs parenting is not the stuff for magazine covers, it's messy business.  It's also really exhausting.  It's also really very gratifying.  And my  Moose is my Moose, no matter what.  So give A a hug and just keep being his papa and moving forward.  You guys are together, that's what it's all about.