This is a beautiful story about a family. Not just any family, but a strong, devoted and loving family. A family with a daughter named Annabelle. This story has been written by Stephanie Curnow (Annabelle’s mother) to showcase the joys and struggles of dealing with a child that has been diagnosed with autism. I only hope that you read this story and gain more understanding of others.
Not all children are the same, but they are all a blessing and each one can teach us so much about the world and ourselves.
So today is World Autism Awareness Day.
Autism awareness is a hard one. There is a saying; once you know one kid with autism, you know one kid with autism.
Basically, it’s a spectrum, and while many share common characteristics, nothing will work for Every child with autism.
So for this post, I want to bring awareness of my life with Autism.
My Annabelle turned 7 last month. I love her so much.
She brings much joy to my life. For example, yesterday I went to the conservatory and found Alister watching a smiling Annabelle swinging high on her swing out back. He said “she sure knows daddy is watching her” as she watched us while she was swinging, and grinned even wider when she saw me watching too. Her smile didn’t let up either. She watched us watching her and revelled in that moment.
She loves hugs and kisses, cuddles and raspberries. She loves bouncing and swinging, splashing and holding hands. She adores piggy back rides and being swung around and around. When she’s tired she loves snuggling in and falling asleep in my arms.
That’s the side of my darling I like to show to the world. But it isn’t the whole truth.
Our lives are ruled by how Annabelle will react. Where we go is dictated by if we can handle Annabelle there. We can’t just pop out in the car and bring Annabelle, because she hates coming home. She will kick and scream and scratch and pull hair if we head home before she feels like we should.
She loves baths but heaven help me when I finally give in and wash her hair. She bites, writhes and rips my hair out. I’m sure the neighbours must think I’m killing her, the screams are so blood curdling.
We have to be careful because she will randomly lash out when she has a sibling too close or trying to play with her. Mostly it’s just a slap on the head, but sometimes it’s a bite. Not great trying to explain to a 3 year old why her big sister just bit her when Maddie was just trying to get some playtime.
I have to deal with looks and glares and mutters whenever I go out. At first glance people just think she’s naughty so of course think I’m a useless mother. She doesn’t like the supermarket so when I have to take her, I have to be prepared to be quick. She helps me push the cart, but doesn’t like to stop to browse, so ends up being a tug of war when I need to stop to look at something. Then screaming when we head home.
It’s just not worth it to go out to parties or play dates or church. It’s so stressful on me, and inevitably Annabelle breaks something, or spills or hurts or runs away. Then I have to apologize and leave upset. So we stay home. We’ve worked hard to make home be a safe place, and a fun place. Our backyard is full of kids stuff so that they love being home.
We can’t have her in school holiday programmes unless we provide a teacher aide, but she hates being home for the whole school hols.
We can’t hire just anyone to babysit. 4 kids is a handful, 3 kids and Annabelle is impossible. I have maybe 2 people plus grandma that I feel comfortable leaving her with.
I probably couldn’t name all the professionals I have had to deal with in her short life. She was assigned an early intervention teacher and a speech therapist And an occupational therapist at age 2 1/2. She’s had more since. I don’t do as well as I should working with her at home, so am constantly feeling like I should do better and am failing her.
The absolute worst are those moments when my mind wanders to what it should be like. What good friends Ella and Annabelle should be. How nice it would be to hear her little voice telling me she loves me. I try not to think like that, as it always leads to “It’s not fair!!!”. And it hurts. Oh, it hurts.
So if you want Autism Awareness. There’s a taste. That’s my everyday life. It’s hard. Harder than you realize, and I work darn hard to make sure it seems easy. Because she deserves to be at school, she deserves to be accepted even though she’s different.
My Annabelle is my darling, and I am grateful she is mine, I wouldn’t give her up for anything. But the reality is that she is my new goal in life. I won’t ever go back to school like I always thought I would. I won’t have a career “after the kids”. You look forward to your kids growing up and moving out, but that’s not the life I look forward to. I will take care of Annabelle until my body fails me. After that, I just pray I can find someone to love and care for her like her mommy does.
Happy Autism Awareness Day.