Off Topic

Hey All. I typically write blog posts related to my books and writing, but there’s something personal on my mind today.

I got a haircut the other day, which (as a stay at home mom who does little for herself) was awesome in and of itself, and I was talking to my hair stylist, Katelyne, about my family and such. Hannah, my youngest, has nonverbal autism and goes to a treatment center that focuses on ABA style intervention (basically, play-based). Because she knew this about my little girl, she felt safe enough to ask if anything tipped me off to Hannah having autism.

I absolutely did not have any inclination that Hannah had autism before she was diagnosed. We moved to the Montevideo area 3 years ago, when she was almost 2 years old. She wasn’t saying much in terms of intelligible words, but I chalked that up to her being the younger sibling of a very, very chatty older sister. I knew that she was very chill and liked to play on her own for the most part, but I thought that was just her personality (because that’s my own personality). When we moved and she saw a new doctor, it was recommended that she begin speech therapy and OT as well.

During her speech therapy intake appointment, they asked at least 200 questions of what Hannah could or couldn’t do. Almost all of my answers were “no” and I cried all the way home.

It was at the first appointment with her OT that the “A” word was mentioned. Autism. I was totally caught off guard. I was scared. I was worried. I was feeling totally helpless.

When Hannah was officially diagnosed and on the wait list for the treatment center I mentioned, I remember how long I grieved. Grieved for what I might never experience with her and what things she might never be able to do. So much was up in the air in terms of her future abilities and with everything in me, I would have changed her diagnosis if I had the power to. I wouldn’t have hesitated to do anything to make her a “normal” kid. For a long time, all I could see when I looked at her was the things she wasn’t doing or couldn’t do. It pained me for how excited we would get if she did something small like high five us.

And then she started therapy. I started to focus on what she could do. I accepted that this is who Hannah is. This is a part of her that can’t be changed. I took even more joy in her smiles and laughter and eye contact. Slowly the idea of who I expected her to be (a “normal” kid) faded as I learned how to connect with her through therapy. I could see her personality shine through her nonverbal way of being.

Now I’m here: truly believing that she is exactly as she was intended to be. I don’t view autism as the enemy anymore. I don’t think of it as something that’s hindering her from being happy and loved. Because in the end, the only thing that matters is that she feels safe and loved.

Katelyne said she was afraid one of her kiddos has autism because of a few similar symptoms that my daughter has. She was scared and felt so vulnerable telling me that. No one wants to think there’s something “wrong” with their kid. We want them to be the best person they can be—we want them to be happy and healthy and well-adjusted. But an autism diagnosis is not the scary thing I thought it was at first. If anything, I was just glad that her behaviors weren’t because I hadn’t done enough (which is what I thought after that first speech intake meeting and it sent me into a deep depressive state).

That isn’t to say it’s not okay to be scared. Katelyne has every right to feel that way, and so did I when this all began for us years ago. In a way, being scared for our kids is just us loving them and figuring out that loving them isn’t enough to save them from struggles.

I told her what I’ve learned since Hannah was diagnosed. How I was scared too and grieved the life I had imagined for her. But I also told her that everything will be okay. That making sure her kid felt loved was all that mattered. That there is therapy and services to help with everything else, but no one else could give her kiddo the love and safety of a mother. I encouraged her to reach out to her family doctor to talk about her concerns and then see if they could get her a referral for an autism evaluation.

Despite my kind words and my encouragement, I could recognize how concerned and scared she was. It was the first time since Hannah was diagnosed that I was on this side of things. It was the first time I realized that everything really IS going to be okay, and that I had the power to help someone else who’s in the same shoes as me.

So if you’re in a similar place—scared that maybe your kid’s odd tendencies might mean something bigger—just know that you aren’t alone. So many parents have walked the path before you, clearing the way so that you don’t have to feel like autism is so big and scary.

That day was also a really good reminder for me, who is so naturally introverted and needs very few people to feel fulfilled, that everyone needs a friend and someone to come alongside us when we aren’t sure what the future holds. I may like to shy away from people and from being vulnerable, but I’m so glad that I followed Katelyne’s lead and responded to her vulnerability with my own.

Give people a chance to help. Give yourself the credit you deserve for stepping out of your comfort zone when sharing your life with people. We need each other.

And if you take anything from this post I hope it’s this: go hug your kids, your significant other, your mother or sister or best friend. Hug them and love them for exactly who they are.

We’re all in this together,