Confessions of An Autism Mom

Confessions of an autism mom.

I’m an autism mom.  I live and breathe autism, its become my life and I’m tired of it.

I’m tired of talking about it. I’m tired of managing the rigid and sometimes unpredictable behaviours.  I’m tired of my child’s limited communication skills.  I’m tired of it all.  I wish my life was…normal.

Before I became a mom, autism was never on my radar, I didn’t know anything about the disorder prior to my child’s diagnosis. But alas, here we are.

I won’t say its been an easy ride.  So many ups and downs, highs and lows, peaks and valleys.  I’m sure I can think of more cliche’s but you probably get my point.

No soon-to-be parent dreams of having an autistic child.  I’ve never heard anyone say “I hope my child has autism when he’s born!” And once a child is diagnosed with ASD, a parent doesn’t say “He’s autistic, I’m so thrilled!”  In fact, it’s quite the opposite.  Most of us are heartbroken and devastated when we learn that our children will have a lifelong disorder that will hugely impact them for the rest of their lives.

Raising a child with autism is hard.  So very hard in so many ways.  Anyone who says otherwise is either lying or fooling themselves.

Autism doesn’t rock and autism is not a gift.  Autism is a disorder that affects an individuals ability to live a functional and independent life.  It steals a persons ability to make meaningful and long-term friendships and relationships.  It also robs many of those affected the ability to speak.  Anyone who tries to convince you otherwise is trying to sugar-coat what life with autism is really like.

Not knowing if you will ever be able to communicate or have a conversation with your child is a terrible feeling. It’s scary and stressful and it just plain sucks. What I would give to have a meaningful conversation with my son.  How I yearn for him to tell me what he’s thinking and feeling. How is this a gift?

Going to a public place such as a mall is daunting.  I constantly worry about what will trigger my child’s next meltdown.  The music?  The crowds?  Or will it be something unknown to us because our child cannot talk?

I cried on command for a year after my son’s diagnosis.  Anytime I would discuss his autism, I would sob, I was heartbroken.  I was angry.  I was sad and I was in denial.  It was one of the hardest years of my life.  In general, autism has made me a stronger person. Having said that, I’ve also become more reclusive and introverted. I avoid almost all situations which involve being around other children my son’s age. Birthday parties, family gatherings, holiday parties, you name it, I’ve avoided it.

It’s very difficult to be around neurotypical children who can talk to their parents, maintain friendships and do all of the things I wish my son could do.  Not only that, I am not prepared to answer questions about my son, nor am I willing to expose him to those who stare and whisper behind our backs. Nope, nuh-uh, not for me. 

I don’t want to turn this into a ‘bash autism’ session, there are definitely some positives to being an autism parent.

When my child makes a gain of any sort, big or small, it’s an amazing feeling.  I feel tremendous pride, it’s quite rewarding. 

My child becomes excited and overjoyed by the smallest of things. He takes so much pleasure out things I would never, ever appreciate and for this I am grateful. He has opened my eyes to another world.

I’ve become much more compassionate and understanding of those with differences. Before autism entered my life, I would have averted my eyes and feel tremendous discomfort around someone with a disability.  Now, nothing scares me.  I do my best to treat all individuals with disabilities with the respect they deserve.

Life isn’t always easy and I have come to learn this since having my child.  I look around and at the end of the day, I’m grateful for what I have and of course, I’m grateful for my child.  Do I wish things could be different?  Sometimes.

Autism has made me the mom and person I am today. It’s not all songs, rainbows and roses, but whose life is a Disney movie?  At the end of the day, sometimes I just need to let out my frustrations, we all do.  It doesn’t mean I love my child any less, it just means that I’m human.

Author: AnonymousAutismMom

Stephanie, Autism Journey

AnonymousAutismMom is a mother, educator and artist. She chooses to remain anonymous to respect the privacy of her family.
By |2018-10-16T14:01:51+00:00January 25th, 2018|Categories: Parenting|Tags: , , , |

4 Comments

  1. Lisa Vance January 30, 2018 at 12:06 am - Reply

    I’m not good at saying how I feel. This touched my heart. I think about the future and it scares me. I love you for writing this and being so honest.

  2. Angela Stinson November 20, 2018 at 8:01 pm - Reply

    Thank you for your article. I know exactly how you feel. It was/is good to hear from someone who feels the same way. I think, from my viewpoint, mothers are considered selfish or bad mothers if we just don’t take whatever we are given with perfect serenity and grace. I realize now that anyone who might think that is completely ignorant. They just have no idea. We aren’t evil or selfsh. We are human. We have been heartbroken. We have to take what has been given to us and make it work. Not that what was given to us is not special. It’s just not easy at all – especially in this world. I love my son more than anything in the world. I really do! But the journey has been more painful than someone with neurotypical children can imagine. Depending on the day and the mood I’m in, I feel terrified fr my son’s future and/or blessed by him bringing my life. I pray to God that I can be the best mother I can be for him. You are not alone!! Sometimes I feel like I am though – and your article is a real blessing to remind me that I am not alone either. Thank you!!!

  3. shannon wilson December 24, 2018 at 7:38 pm - Reply

    Not sure how long it has been since this was written. But, either way, I’m having one of those days and need to vent. Its christmas eve and today has been awful. My son is pushing me to my breaking point and although I have tried any and everything there is out there to help him, nothing works I just wish u had a normal life. For one day.

    • ASDmom2 January 2, 2019 at 8:17 pm - Reply

      This is specifically to Shannon, I hear you. I wish I could tell you some amazing trick to make it all better. People say, take your breaks, do something for yourself or don’t be mad at them its not their fault. But honestly, I’m struggling too. My boy is 15. He’s taller then me. He looks like a grown man. He talks in repetition about the same stuff. It makes me crazy. I have tried EVERYTHING. He’s been going to speech and Occupational therapy since he was 2. Gluten free diets, Brain Balance therapy. I keep hoping that this therapy is gonna make him better. This therapy is gonna help him be normal. He has no friends. Lives on YouTube and loves his DVD’s. He’s verbal and he knows love from his family. But as I look towards the future, what is life gonna be like for him? Or for me? I hate what I’ve been dealt. And today, I want to disappear. I’m running out of ways to keep it together. But I’m his rock. His person he trust the most in this world. He always looks to me to guide him and without me, he would be lost. So I will go to sleep and wake up to a new day. I will give it a-go all over again. As much as I want to fake my own death and live in Fiji, I won’t do it. Because I love him and he loves me, I have to pull my strength from that Love. When your son pushes you to your breaking point, punch the crap out of your mattress, scream into your pillow find a way to get relief or ask for help. You’r not alone. And as far as a normal life, my best friends normal teenager son is giving her a run for her money. No mom has it easy out there. No one.

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