Everything I Wish I Could Say…

As autism awareness month continues, I’m flooded with so many thoughts and emotions. Our son was diagnosed almost three years ago and this journey has been life changing. I love my beautiful son Maddux. He is the center of our world.

But, I hate autism a lot of days and what it steals from our family. I grieve the life our son would be living when I see other young boys his age. It kills me inside and is something I will always struggle with. Most days I’m brave and a warrior mom but sometimes I crumble too.

For all the outsiders looking in…please know we are doing the best we can, the best way we know how. We know from the outside our life looks messy, chaotic and difficult. It looks that way because it is. I’m constantly searching for therapies, treatments and biomedical information, the knowledge never stops. I’m always trying to help him and make his life as best as possible.

When outsiders make suggestions most of the time from a loving place, it kills me a little. It always makes me feel less than. Like I’m not doing enough when I’m giving all that I have.

How can you sit and make suggestions to me when you can barely stand being around the chaos for few hours. Imagine every day? I promise were not bad parents. Everything is trial and error and learning as we go.

Autism doesn’t come with manual

You may witness Maddux running, jumping and climbing all over the furniture and yes it drives us crazy. We know he’s too big but we are trying I promise. Maddux is a sensory seeker and his body physically has a hard time staying still. His brain tells him sensory seek constantly. Please know it’s not just bad behavior.

I hate being asked ‘Is he talking yet?’

No, he’s not, but when he does we will shout from the rooftop to let everyone know (I imagine that day in my dreams at night). Yes, we try to make him talk, and yes, we talk to him every single day and yes, he’s been in speech therapy since he was two.

Again, we are trying. We’re currently looking into a new communication app called proloqou2go to use on his ipad.

Maddux doesn’t like clothes, so if you come to our home he’s most likely going to be in a pull-up or underwear only. If we tired to keep him dressed I would be chasing him around all day long putting his clothes back on every 5 minutes. I’m not joking!

It’s a battle we can fight later. In our home I believe he should be comfortable and if that’s in a pull-up then so be it. He’s almost 7 and we still have a long way to go. This is a sensory issue too.

Maddux is half potty trained. We are so over poopy diapers and buying expensive Goodnights! We always say God gave us a break when our daughter Marley potty trained at 2.5 overnight. Were grateful she’s potty trained but it killed us watching her surpass Maddux. Most people say it will come with age. I pray daily about it.

I’m not sure there are any words to describe watching Marley pass Maddux up in all areas. It’s heart wrenching and sad but we are grateful for her. She’s been our ray of sunshine and our saving grace. With her we get to experience life with a typical child. We learn from her daily. She knows her brother is special and she’s already a big little sister.

Maddux loves his little sister. He gives her hugs and kisses, wipes her tears. It makes my heart melt. He may not be able to talk but he will show you his love. We will raise Marley to look after him when we are no longer here to do so. Which I can’t even think about it.

The last three years have been a roller coaster for us. I had no idea the struggle would ever be this hard. There are days when depression, worry, and anxiety just take over my mind and I can’t escape it. I’ve learned to lean on my faith knowing God has a plan for our sweet Maddux. Our hope and faith is what keeps me advocating for him and being his voice.

My plea to everyone is to show parents of special needs children (actually all parents) grace and kindness. Raising children isn’t easy. Before you judge or want to give advice please know they’ve probably thought of it, read about it or tried it.

We really are doing our best. Try to embrace the chaos and remember we may live a different kind of normal. This world needs more grace, love, compassion and inclusion. So the next time you see a child struggling it may not be just bad behavior. Maybe they have things going on that they have no control over.

Can you imagine how hard it is to be in a body you can’t control and the outside world doesn’t understand your behavior? My point exactly. We have no idea what i’ts like. So please extend grace and understanding to everyone you meet.

You don’t have to know their battles. Just know they’re waist deep in the trenches.

Written by, Mabel Ames

My name is Mabel, I’m just a mom doing her best. We live in a rural town outside of St. Louis, MO. My son Maddux is a beautiful little boy who also happens to have autism.

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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 and subscribe to our newsletter.