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 of things I would never, ever give a second look, and for this I am grateful. He has opened my eyes to another world.

I’ve become much more compassionate and understanding towards those with differences. Before autism entered my life, I would have averted my eyes and feel significant 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.