400 Days of Autism

I remember everything about that day.

The strong cologne of the man in the elevator, my shaky hands as I searched for change for the parking station, the salty taste of my tears and the uncontrollable numbness and heartbreak all the way home and still to this day.

I had been on a mission for almost 6 months for my son’s autism diagnosis AND even though I had 6 months to prepare it still stung like a slap to the face.

It was real and true, and there was no going back.

It has been about 400 days since my nonverbal son received his ASD diagnosis.

Some of these days have been so hard, so dark, some have been tear stained and coffee drenched, and ALL have been challenging …but we have made it through.

You will too.

I am sleep deprived, have gained a few pounds and my priorities have shifted drastically. But, our family is still intact, we are meeting goals and making progress and our home is filled with love, perseverance and hope.

Here’s my advice to you, as you begin your autism journey:

Find an outlet

Find the outlet that works for you, maybe its crying in your car or eating cookies in the bathroom. Perhaps you start a blog, meet with a counsellor or fundraise for your local autism resource center.

Everyone copes and grieves in different ways. Find something that works for you…but the key is to find something!

Parenting or providing care to a child with autism is an emotional rollercoaster. It will eat at you if you do not find a way to release your feelings and cope.

Some days you laugh, some days you cry a lot and some days you want to scream.

Autism is so hard but, every day is a new day.

It takes a village

Two of the most comforting words in the universe are “me too”. Find your “me too” people.

You may have the most supportive family and friends but while they sympathize and support you- other autism parents will truly understand your struggles and your victories.

They will share their experiences with you and provide the encouragement you need to help you get through certain things.

Your village will also consist of professionals like speech pathologists, occupational therapists, dieticians, naturopaths.

As you recognize deficits or unmet needs for your child, recruit professionals that will help minimize those deficits and assist you in meeting those needs.

You will also need to move some people to the “outskirts” of your village. Not everyone in your life will understand autism or accept your child.

If your child is being treated unfairly, if someone is causing you stress from their lack of understanding-trust me, you will know when this happens-the sickening feeling in your stomach will be a giveaway-move them!

You will notice your priorities will shift and you will not have time to spend dealing with drama- situations, attitudes and people who don’t get it, and that’s okay.

Self care

At the risk of sounding like a Hallmark card…you are important and your health and well-being matters!

For the first year following my son’s diagnosis everyone was telling me to make time for myself and to focus on my self-care. Honestly, I didn’t have time for that with everything that was going on.

Well, let me tell you-I make time for my self-care now. I was feeling burnt out, exhausted and sick all the time from the overwhelming stress of autism.

Now, I know that I have no choice but to take care of myself so that I am able to provide the care and do the important things that my son needs. Self-care does not have to be a day at a spa, I try to find a little time each week whether it is to take a hot bath, go for a walk, or lay in my bed in a quiet room.

Some weeks are hectic and I’m lucky if I get to pee by myself, but self-care gets better, and you become more creative as long as it’s important to you.

Trust yourself

Autism is absolutely going to change you. It’s up to you for the change to be positive.

I had to learn to trust myself and to trust my judgement when it comes to my son and his needs. Not to sound cliché, but autism has changed me from a Mama Bear to a Grizzly.

When I first started this journey, I was overwhelmed and accepted whatever was told to me. Now, I have become a strong voice for my son-sometimes loud and fierce if required.

Yep, I am that Mom!

I had to realize that while I may not know everything about autism, no one knows my son like me. It’s my job to offer suggestions, ask questions, or speak out when his needs are not being met.

If I don’t speak for him, who will?

Discover your “pain points”

One of my biggest pain points is seeing my son amongst a group of “typical” kids his age.

I always tell myself to stop comparing my son to other kids, I truly love and accept him exactly how he is, but it is so damn difficult not to notice their skill level and his delays.

We did a weekly movement class with fun activities for eight sessions.  I have probably cried in my car after most of those sessions.

I acknowledge that seeing my son with other kids who do not have autism is a major pain point for me. But, I also know that I need to suck it up.

I’ve had to stop and realize that despite how I was feeling, he was running, laughing and having a great time and so were all those other two-year old’s.

This is my problem. It’s hard and I try to mentally prepare for it knowing how I may feel.

Now, each time we go I focus on my son, having fun and making memories. If my mind goes to that place, I have to give myself a serious kick in the butt and come back into the moment.

Customize based on your experiences

In October my son was kicking and thrashing at the sight of a winter hat. He was yanking it off his head before I could even get it on.

As the Canadian winter approached, I knew we were in trouble. After many creative approaches, he now wears his hat no problem. It was hard work but we got there!

When my son was diagnosed I made a vow to myself and him that we would still live life to the fullest.

We are still working to determine what that means for us. I would never not try something just because my son has autism, instead I think long and hard about potential obstacles and solutions to make it work. Bad experiences become learning opportunities not limits!

Often times, we have to take time away from something and attempt it again in a few months or try different approaches customized to my son.

I hope your next 400 days are filled with love, hope, self-care, progress and oodles of support.

You got this!

Written by, Chrystal Venator

My name is Chrystal Venator. I am a proud wife, ASD Mom, Step-Mom and Pug Mom. In January 2017, at 21 months my son was diagnosed with autism spectrum disorder. He is almost three years old and non-verbal. Since his diagnosis, I have become a full time stay at home Mom. I am 1000% focused on raising autism awareness and helping my son live a full and fun life. You can follow their story on Instagram at Chrystal.v.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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