‘Every single day is a back and forth of finding the joy and grieving the life you thought your child would have.’: Woman pens letter for ‘the struggling autism mama’

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“A letter to the struggling autism mama,

I see you, and I feel your heartache. I understand every single day is a back and forth balance of finding the joy and grieving the life you thought your child would have.

Your days are now filled with therapy appointments, IEP meetings, arguments with insurance and sleep deprivation.

You are now leading a team of educators and therapists you didn’t sign up for, or ask to be a part of. But you know it has to be done. Own your seat at that table, you are important.

You’ll find yourself in the depths of the internet, late at night. Close out the window, you aren’t going to find the answers you need there. Find a support group; like-minded moms are much more helpful than Google.

I remember the days of girl’s nights, play dates, and family outings. All of those things are simply too difficult with our son’s diagnosis, so our life has now shifted.

Sadly, you’ll have friendships fade, but you’ll find moms along the way who share your journey but won’t be in your corner, either… but I promise, even amidst a pandemic, the moms who were meant to walk with you and lift you up will find their way to you.

I promise even on your ‘worst days,’ your child is thankful you’re their mom, and your family is looking at you with pride in their eyes about how wonderfully you’re doing.

To answer your secret question – no, there isn’t such a thing as too many cups of coffee when your child hasn’t slept in several nights. You can drink more water later.

I know phrases like ‘He will eat when he’s hungry,’ ‘Back in my day,’ and ‘He will sleep when he’s tired’ pain you to smile and nod through.

Take my hand, lean in close, and listen… you will make it through this, and you will show strength and grit you never knew was in you.

You will fight, and you will fail, but you will learn a love that can only be felt and not explained. Your heart will burst with pride when a success comes your way, and it will shatter into one million pieces when you see your child being excluded.

You will fall apart, and you will find your mama bear roar; this journey is tough on your emotions, so it’s okay to go from one extreme to the other. Just make sure you don’t stay there for too long.

Just wait for that first ‘I love you,’ it’s a whole body feeling that will carry you through your hardest days. Whether it’s a kiss, a touch of the check, a sign, or vocal approximations… your heart will know what they’re saying, and it’s almost too beautiful for this world.

Your husband, if you’re married, will feel left out or like you’ve given up. I want you to listen – remember he is your partner, and you’ll need each other when you feel like the rest of this world doesn’t understand being a new autism parent. Love him, and tell him every single day. Lift each other up.

It will get better, it will plateau, and you will have moments where you feel the air has been knocked out of your lungs. But that’s only a brief phase.

You only need one mom in your corner; you’ll build your community over time. The one who checks on you every morning, who acknowledges your hard and doesn’t make it a competition. The parent who can truly say ‘I get it,’ who keeps your secrets safe, and lifts up your chin when your face is tear streaked. She will find you along this journey, so you don’t feel so alone, And if you’re really patient, you’ll find a few more along the way.

And just in case your corner is still waiting for your partner in crime, your soul sister, or whatever term fits you. Let me be the one to tell you, I see you, and you’re doing an amazing job. I’m here for you mama, we will persevere.”

Courtesy of Amanda Deluca
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