Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad


with 2 comments

The hospital where Pudding was diagnosed recently sent out a request that parents whose children were diagnosed there write a letter to other parents of children who are just now going through the process.  I don’t know if they will get to use my letter, as we have to keep anonymous.  However, the internet has a magic way of getting a message where it is needed.  It did it for me a year ago, and now I want to pay it forward.  Here is my letter:

Dear Parent,

You don’t know me, but I’m right here with you.  I was you a year ago, sitting in this room, hearing the words of the doctors.  Maybe, like me, you wanted to hear the diagnosis.  You knew that getting this label was the start of getting help, and you thought you were ready.  Yet when they deliver their findings and it is irrevocable, how you wish you were wrong, that it was all a mistake.  You’ll wish none of this had ever happened.

You feel so hopeless.  That you made mistakes, you missed the signs, you let your child down.  It will be so hard to carry on, but one day hope will return.  You’ll find it was tucked inside your child all along.  I did too.

You feel so mute.  There is so much to say and you just can’t find your voice.  You’ll be silent when you need to speak out, and speak out when it would have been better not to say anything at all.  You’ll make mistakes, and your child will see that you are okay with making them.  That nobody is perfect, and it is okay to err, to ask for help when needed.  Even when you are wrong, you’ll be teaching her something valuable.  You’ll find your voice.  I did too.

You feel so ordinary, too ordinary to have such an extraordinary child.  There is so much to learn.  A whole alphabet soup of therapies to be learned about, studied, weighed-up, started or rejected.  You have to learn about them all, you’ll fit a doctorate of learning in during the hours your little one sleeps.  One day after reading so many books, science journals, web-sites, you’ll realize there is always going to be more to learn.  You’ll give yourself a break, you’ll need it.  I did too.

You’ll feel so jealous of other parents.  Even though you wouldn’t wish your child to be any other way, you’ll resent they way everything comes so easily, so naturally to other children.  You’ll resent they way other parents can have dates, vacations, social lives.  Even though you wouldn’t change yours, you’ll resent theirs.  I did too.

You’ll feel like you don’t understand.  That your child’s brain is wired so differently there is no way to figure her out.  Then piece by piece you’ll start to figure it out.  You’ll understand why they call it a puzzle, and you’ll get really, really good at finding the missing pieces.  You’ll understand what makes her happy, and what makes her scared.  You’ll become so adapt at changing her environment that you won’t even notice at first that she no longer needs all that support.  But you’ll be right here ready for when she does.

You’ll feel so incapable.  You’ll exhaust yourself trying to be a therapist, an advocate, or a teacher to your child.  You’ll become so frustrated in the process.  One day you’ll figure out that you only really need to be a mother.  I did too.

You’ll feel so angry.  That anger will energize you, transform you into a warrior ready to fight.  Then one day you’ll see that there is no conventional enemy to fight.  You’ll wish there was, you know you could win that battle.  You’ll make better use of that anger.

You’ll know who your true friends are.  You’ll become a better friend, a better mother, a better wife, a better daughter.  Even when you think you have been incredibly selfish, and turned away from others, you’ll have grown.  If some don’t understand, you’ll find a way to make them understand.  You’ll be concentrating so hard on your child’s development that you won’t even notice your own.  You’ll learn more from her than you could ever have imagined.

You’ll realize that this diagnosis, this label that you thought meant everything doesn’t change your child in any way.  This is the same incredible human being that you have always loved.  But you’ll change.  You’ll grow in ways you never imagined.  You’ll want to change the whole world along with you.  You’ll do anything to make this an easier place for your baby to just be.  You might even find that if you have to, you’ll do it all over again for your other child.  And it will be the same, and it will be different.  You won’t want to do it again, but you will, and you’ll be stronger this time.

You’ll feel so alone.  Like nobody was ever in your situation, and could never understand what you are going through.  Then one day you’ll realize there are hundreds, thousands of us who have been there, who get it.  Maybe one day you’ll decide to share your story, so somebody else will know they aren’t ever alone.  There is always someone in that room with them.

I wish you didn’t have to be in this room, hearing these words.  I wish none of us did.  Just know that you’re not alone in the room.  Every day there are more of us.  Know that we’re all right here with you, good times and bad.

We always are.

Love Spectrummy Mummy.

Written by Spectrummy Mummy

July 28, 2010 at 7:27 am

2 Responses

Subscribe to comments with RSS.

  1. Wow. Ya know I’ve only just found your blog today…yet your words make me feel like you know me (my heart) better than anyone else. Its so true. All you have said. In the five minutes I’ve read your post its like I’ve realized so much about about myself. You see,this year both my sons have been diagnosed with autism. Thank you so much for sharing this.


    November 1, 2011 at 4:16 am

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: