To Momma, On the day of your child's diagnosis

Dear Momma,
You're reeling.  I know it.  You're trying to tell yourself to stay calm, repeating "one step at a time" and "Rome wasn't built in a day", but inside you feel like your organs are turning to crumbs and your blood might stop coursing through your veins at any moment.  There is a part of you that honestly, truly, might have died today.  That part that was sure of things, that believed the bad news wouldn't come to YOUR family.  The part that was sure no one knew your children as well as you.  The part that didn't have to second guess the hard decisions.

Momma, it has been exactly a year since I heard the words pass my lips for the first time: "I think my son may be on the Autism Spectrum."  It's been a exactly year since his pediatrician said to us "I agree.  I think you need to seek further evaluation."  My little boy was three years, four months old then.

Months later, on February 11, 2013, Mini and I walked out of the Kennedy Krieger Institute with a diagnosis.  I kept telling myself "You knew this.  He is the same child he was when you walked in here this morning.  Nothing has changed.  All you know now is that we're sure."  But in many ways, the only thing I was sure of was that everything in my life would be different, beginning that day and forever more.

Momma, that is true.  Everything in your life will be different from now on.  Your child will start therapies instead of soccer, your child won't go to school in the same way you thought.  You will learn to be part speech pathologist, part occupational therapist, part behavior analyst.  You will run a therapy clinic in your home, your car, the grocery store.  You will never, ever stop thinking about what more you can do to help.  You will never stop wondering what potential exists for the future.  You wonder when you'll ever know anything for sure, ever again.

Today, you feel suddenly lonely.  Desperately, terrifyingly lonely.  After hearing those letters... ASD... it seems your friends lives are more perfect than they were yesterday, and their children are smarter, more normal, more capable than they were yesterday, too.  You feel like no one you know is going through this, and no one gets it.  You feel completely misunderstood and awkward talking about your feelings or your child with your friends today.  These are the same friends that, yesterday, you considered your inner circle.  Your BEST FRIENDS.  Suddenly, you feel different from them in such a significant, scary way.  It's hard to feel validated by them, even though they love you and want to help you in any possible way.  You can't describe this loneliness, this otherness.  All you want is to feel connected.  You felt connected yesterday.  But today, you became different.

Your worry feels bigger than it did yesterday, your life feels harder.  I know.  No one can tell you immediately where to go for help, so it feels like the world got smaller- it's closing you in and you can't breathe as easily when all you see when you look up are people who aren't like you, who can't help you.  You want the doctor to say "Your child is on the Autism Spectrum....  And HERE is the prescription for that."  Whatever it is, therapy, pills, walking on hot coals, joining the circus.  "Doctor, whatever I need to do, I'll do it.  Please just tell me what to do because I don't know what to do or where to go."  And yet, no one will give you the prescription.  You have to discover it, through this journey you started today.  The time between today and when you meet the first person that helps you is the WORST TIME.  I hate that part the most for us.

But Momma, this worst time is short-lived.  I promise.... this deep, dark, singular loneliness you feel is temporary.  I promise you this.  Your community will come to you out of the woodwork.  People Who Get It will come into your life.  I am here- not just the "I" writing this note, but "I" meaning every mommy of a baby on the Spectrum.  We are at the grocery store with you, we are in the school district office talking about special services for our children.  We are sitting in the lobby together while our babies wait for speech and behavior therapy.  One day soon, you'll be sitting in the lobby with me, too, and you'll feel safe.  We will be playing at the playground, hoping our sons and daughters behave appropriately on the jungle gym.  We will be in the pediatrician's office, the dentist's office, the furniture store.  You will walk by us on the sidewalk.  Your child may say or do or react in a way that is obvious, but you won't need to protect me or him from that- because We're Here Together.  You will look at me and know you can just BE with me.  Oooooh thank goodness.  We are in a new, wonderful community now.  A community of moms who will never expect perfect, who never even try perfect, who know we're all not perfect and we feel SO SAFE in this room.  We feel so understood.  You will meet us when you're ready- the Universe will bring you into our folds.  I'll smile at you and say "What's your name?"

It's hard to figure out what's next for you to do today.  I know that.  You just got this diagnosis and you wish that someone, somewhere would now tell you the names of all the people who are going to help your child, where their offices are, their phone numbers, websites, and exactly all the ways in which they are going to make your child better.  You want to start right now.  You want to drive from your diagnosis to your first therapy session.  But you can't because the diagnosis is a beginning of sorts, but it is not a pivotal beginning.  The broad diagnosis of "ASD" (Austism Spectrum Disorder) really doesn't do much to either a) help explain your child, or b) help guide you to an effective way of dealing with the symptoms.  The Diagnosis is a word.  It's a code on an insurance form that will open the door to having therapies and remedies covered by your insurance.  It's a little bullet of ammunition that you can use to get the attention of speech therapists, doctors, and your school district.  It immediately changes you on the inside, but it doesn't immediately change your home, your environment, or your child.  The diagnosis won't make your future immediately brighter or dimmer, just standing on it's own.  It's what you do from here that affects the future long term.  You know what?  Just BE today.  Just sit with your baby and your sadness today.  Tomorrow when you wake up, you'll figure out what first step you are able to take.  This is a journey of a thousand miles and part of that journey is the part where you sit and replay the words "Your child has an autism spectrum disorder" over and over again, and you feel paralyzed and terrified.  You have to give yourself space for that fear.  Then, tomorrow, get out of bed, wipe your eyes, brew a huge and bottomless pot of coffee, and take the next step.

I can tell you, Momma, that everything will, undoubtedly, be okay.  It won't be the same "okay" that you had in your heart when you held that little baby for the first time, or even when you dreamed about his future last night.  The best part of this journey is that you will find your new okay.  It exists, and you will make it.  You'll gather your team of people Your Child Needs, and you'll all become cheerleaders, problem solvers, coaches, and teachers.  You'll have bumps in the road, fits, tantrums and tears, but you are going to find a new okay.  It is hard and exhausting sometimes to be the drum major and CEO of this diagnosis, because it all isn't clear today and you'll get no prescription for success.  But you will find victories in unexpected places, you will find hope in people you never thought you'd meet.  Hope is EVERYWHERE on your journey.  I know you don't feel it today.  So today, I will feel your hope for you.  I will, and all of the other mommas on this journey with you are feeling it for you too.  Your friends feel it for you even though they haven't figured out how to communicate it.  Your family feels hope for you.  And all of us, this whole Community- the one you have Now and the one you are making starting Tomorrow- we all are walking by your side.

You've begun a LONG journey.  The diagnosis sets a process in motion by which, one day, if the Universe cooperates, you will understand your baby and your world and you will have done everything you can think of and everything will be okay.  Unfortunately, Momma, that's not going to be anytime soon.  The nature of ASD's, unfortunately, doesn't grant you the gift of immediate understanding.  You have a great deal of fight and struggle ahead.  The rewards, however, are JUST as great as the struggle.  I promise you that you will stare at the sky one day, with a big smile stretched across your face and happy tears stinging your cheeks, and you will feel gratitude for your Journey.  The sun will cast gold and warm on your skin, the sky will be full of glittering blue diamonds and fluffy marshmallow clouds that seem they are the gates to Forever, and you will feel Content and Peace for the first time in a long time, and you will think Ohhhhhhhh I am here.  Thank you, thank you, thank you, I am here.  Good Morning, New and Beautiful Life.

Let's get moving toward that bright blue sky.  Tomorrow.

Love,
Momma