My First Day as a Mother to an Autistic Child

Dear Me,

Today is your first day as the parent of an autistic child. It’s not really your first day because you’ve known for a while now that something wasn’t quite right. Yes, he laughs when tickled and he’ll nestle into the crook of your neck when his own exhaustion begs him to, and he’ll clap his hands together. But he’s always looking at his own hands; his gaze never cranes upward to your hands or your face and he just doesn’t seem to share in the joy of that moment with you. You’ve felt the gentle tug in your gut. It’s been telling you to press forward and to keep asking questions and it’s brought you to this day and this place where you were just told that your child has autism.

The diagnosis is both comforting and devastating.

Yesterday, he was still just your delightfully quirky toddler who loved to slap the cord of the vacuum or spin the wheels of his big brother’s dump truck.

Today, he’s a hand-flapping mess who’s stimming off of everything and who can’t go from breakfast to playtime without melting down.

Yesterday, he adorably swatted your hand when you attempted to feed him slightly chunky carrot puree.

Today, he has texture aversions and sensory issues.

Yesterday, he was a babbling, chatty fool.

Today, he’s a two-year old with a pervasive developmental disorder who’s scripting and perseverating.

Yesterday, you felt uneasy and with every breath you asked yourself “Does he have Autism?”

Today, you know.

In the coming months, you’ll learn so much about your little one and you’ll finally have some of those answers that have kept you awake at night. You’ll also complete more paperwork than you ever did to buy a house, a car or even have that baby, combined. There’s data sheets and questionnaires and food logs and word lists and therapy schedules for multiple disciplines and as prepared as you think you are to take on this challenge and fiercely advocate for your child, please know that it will, at some point, overwhelm you. It’s a lot. And if you have other children, shit is about to get real.

You’re going to struggle with telling even your closest friends and family. Unless they’ve been through it, they won’t know what to say. As you go from person to person and explain the steps you’ve taken over the past months, you’ll find yourself describing the heartbreaking moments when you knew, in your heart, that your baby was living in his own world. Over coffee, you’ll tell your friend how he’s content to spin the lids of your pots and pans over and over and never really cares if you play along or if you enjoy watching the spinning lids as much as he does. Of course your child has brought you immense happiness and you feel bonded and close. But, he doesn’t see you as a teacher. He doesn’t respond to your requests. When you blow bubbles and he squeals with delight, he looks to the container for more. To him, you are a very uninteresting inanimate object. Now you know that this is where autism lives.

But starting today you will learn something new every day and each new skill is a tool in your toolbox and you’re going to use these tools to breakdown the walls of this lonely world in which your child lives. You will learn how to get him to look at you. Once he’s interested in you, you can teach him wonderful things like how to complete a puzzle, how to dance to music, how to put his shoes on, how to communicate and eventually learn that you are “mama”. You never thought that word would mean so much until you’ve had to work as hard as you both are going to work for him to understand it enough to look at you and smile and intentionally use his new language. This moment will bring you to your knees.

Never stop asking questions. No two children with autism are the same so what works for one may not work for another and you’ll learn faster if you ask questions. This may be the steepest learning curve of your life so be patient with yourself if you don’t understand everything right away. Kindly remind the therapists who work with your child that you don’t have a master’s degree in occupational therapy, speech therapy or behavioral analysis. They can and should talk to you like a parent, not a colleague. They should have reasonable expectations for what you can accomplish at home. They are there to help you help your child, not to confuse you to the point of being practically useless. Be honest with them when you’re unsure of something.

This isn’t a ten-day dose of antibiotics and a course of steroids. This is dealing with your child’s sensory system and finding what helps and what hurts. This is teaching your child that communicating is a worthwhile pursuit. This is changing behaviors that you have likely been inadvertently reinforcing for months. This takes time and patience and money. There are resources available once you have a diagnosis of autism so take comfort in knowing that regardless of your financial situation, there are lots of opportunities for care. Start with your doctor and don’t stop until you have what you need to help your child.

Celebrate every success, no matter how small or insignificant. If you spend your time worrying about what you’re child isn’t doing rather than the wonderful progress he has made, autism will swallow you whole.

Finally, exhale. You’ve been holding your breath for months rationalizing and hoping that the truth would be simpler and easier. Your path just got a little bumpy but your child is depending on you and needs you calm and focused. Of course you’ll have moments of weakness and frustration, and you’re more than entitled to deal with that however you need. Don’t feel bad about this because you’re human and this is tough. But this isn’t about you, it’s about him and his absolute best outcome is in your control. No one can break down those walls like you and, trust me, when it happens, you’re going to want to be there.

Mackenzie is a SAHM to five beautiful, hysterical, annoying-as-f#@k-sometimes kids. She worked so super hard in her twenties to earn an MBA only to retire and become her kids’ bitch. Now she spends her days dashing into the fray and taking power naps. You can catch her tossing quarters into her swear jar on her blog Mommy Needs A Swear Jar and on Facebook. She is confused by Twitter.