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A Letter to the Mamas



Guest Writer: Amanda DeLuca | @jacksonsjourney_jacksonvoice


In May of 2016, I learned the term "autism mom" was now a part of me.

In April of 2014, my son Jackson made me a mom. From the day we brought our new baby home from the hospital we knew something was "different." Jackson barely slept, always had to be moving, had food aversions from a very early age, and looking back now, I know why.

At twelve months old Jackson lost the few words he had, stopped responding to his name, wouldn't transition to solid table foods, and we began begging for help.

My doctor told us "He was a boy, and he would talk when he was ready" and our Help Me Grow evaluations never put us in the referral zone. I felt like I was screaming at the top of my lungs in a room full of people, but nobody could hear me.

We finally received a referral, followed by a diagnosis: autism spectrum disorder level two........ and this is where our story of IEP meetings, behavior therapy, years of advocating for inclusion, and trying to find the balance of forever began.

So if you're a mama who is struggling with an autism diagnosis right now, this letter is for you:


Mama,

I see you, and I feel your heartache.

I understand that 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 that 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. Closeout 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 that fade, and you’ll find moms along the way that 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 that 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 that 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 ok 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 cheek, 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.


 

Amanda DeLuca is an educational advocate, small business owner, and co-founder of "The More Than Project". Listen to Amanda's podcast, Momming Autism, and read her blog here.



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