An Open Letter to Parents on Diagnosis Day

I see you in the doctor’s office holding your breath. The room is small and stuffy. You are afraid of what he will say. You are terrified he will confirm your suspicions – that there is something wrong with your beautiful baby – are true. Instead, he reassures you. Come back in a few months, he says. And when you do, your step is light, confident. Your 18-month-old son has so many words now, many more than he did the last time you visited. Maybe your boy is fine after all. You probably overreacted. You’re a first-time mom.

The doctor has a lot of questions. No, your son doesn’t point. He doesn’t make much eye contact. He isn’t interested in stuffed animals. He prefers to play with the remote control! You laugh nervously. It’s true that he cries more than any of your friends’ babies. But maybe you just haven’t figured out the right way to soothe him yet. You don’t know all the tips and tricks. It’s your first time, after all. You’re a newbie, a rookie. The doctor scribbles something down in his chart. The bottom of your stomach drops out.

By your son’s third birthday, it’s official. He has a diagnosis. It’s not your fault. It’s no one’s fault. The signs were there all along. You were just too scared to see the words in bold type: Autism Spectrum Disorder. At that moment, you want to rip those words off fast, like a Band-Aid, as though that would make the process less painful. You don’t want that ugly label anywhere near your baby with his soft, doughy skin. But you push aside your pride, knowing that label is a means to an end. Without it, he won’t get help, and he needs help. Lots of it. And the sooner, the better. So you sidestep the tidal wave of emotions, the guilt, the sadness... If you don’t, it may drown you.

There is no time to waste. There is so much to be done. You read the books, scour the articles. Contact the professionals. Assemble the troops. It will take an army to support your son, and you must guide the way. You know him better than anyone. Appointments, forms, endless papers and phone calls. You feel the most alone you have ever felt, even when you are surrounded with people. You wish someone would hold your hand, take charge, and tell you exactly what to do to make it better for him. You are given papers, so many papers, and then sent on your way. Rudderless. For months you wing it through trial and error, through word-of-mouth.

You struggle to look past the fog, to push through the cobwebs, to find your son. Your real son. He’s still in there. He’s working so hard. He sees a behaviour analyst, a speech-language pathologist, an occupational therapist. He can’t hold a pencil. He says ‘you’ when he means ‘I.’ He hides under the table whenever he gets upset. He screams a lot. He hits. He throws things. He covers his ears and screams at the sound of a toilet flushing. You lie awake at night wondering what will become of your little boy with the doughy cheeks. Will the world swallow him up and spit him out? You long for a crystal ball or a fast-forward button. You wish someone would sit you down and tell you, five months or five years from now, with help and time, it will be ok. He will be ok.

Undefeated, you soldier on, with circles under your eyes and a strong coffee in your hand. You will never, ever stop fighting for your baby because he is worth fighting for. And I’m here to tell you, because no one ever told me:

With help and time, it will be ok. He will be ok.

How do I know all of the above is true? I know because I've been there. Where you may be right now. I remember how overwhelming it was - all the information, all the so-called experts offering up conflicting information. Not knowing where to turn for advice. I wish I had access back then to a place like Monarch House. Determining the expertise needed to help your child and then assembling a care team that will be on your side is something Monarch House can help you with. Monarch House is a one-stop shop full of resources, to help you (check out this handbook made just for parents) and your child. A team of highly-skilled therapists under one roof to tell you which milestones you should be paying attention to and what the next steps to take should be. They also have a helpful blog that offers general information, advice, guidance, and support to parents.

With the right help, your little one will surprise and amaze you. Every day the troops — his team of therapists — continue to rally at his side. They are his cheerleaders, his closest allies. They are patient and skillful and tenacious. They will believe in him, and so you will believe in them. You are not alone, after all. You learn that the cliché about it taking a village is especially true for a child with developmental delays.

Take it from me, a diagnosis isn't a tragedy. The tragedy is doing nothing to help your child when they need it most, and when they stand to gain so much.