Haley’s Story. She is 36.
You know, some people think that you are valuable based on your ability to work, or what you can contribute or if you can earn an income, but we believe that – because you are alive – you have value. So it doesn’t matter if all six of my children will grow up and leave the home at age eighteen, go on to college and build a career. They are here for a reason and I am blessed to be a part of their time here. This life is but a moment, a flash, on the spectrum of eternity.
I have six children, two girls and four boys. Three of my boys are on the spectrum and the youngest is just a baby so we just don’t know yet. Two have been diagnosed with autism and a third who is on the spectrum but not yet fully diagnosed and I think people expect me to mourn that as though it’s a great tragedy. What they don’t understand is that my children are gifts from God – they are special and unique and I learn from them every day.
It’s not easy, though. I never said it was easy. I am diapering, cooking, cleaning, shopping, and home schooling my oldest children from the moment I wake until the moment my head hits the pillow. Our house is loud and unpredictable and chaotic. My husband and I joke that the kids are like popcorn at the dinner table. They jump up and down. First here, now there. Meanwhile, my daughters have to sit quietly and it is a constant process to explain to them that their brothers can’t control their behavior in the same way, so the expectations are different.
My sons keep me busy – like when they continually remove all of the socks from the dresser and line them up on the floor. Outings are a whole other ball of wax! My son Kaleb learned at a very young age, about two or so, where we were going when we were driving in the car. I didn’t know where my parents were driving at that age! But Kaleb did. And when he didn’t like where we were going, he would let me know. It finally became part of the routine that I would know that when we got to a particular stoplight he would always begin to scream, so we would talk about our route on the way to the stoplight. And that’s what you do. You adjust, and you constantly work with them on behavior modification.
The world sees my sons as different and to other people that means they are defective or they need to be fixed, but truly they are beautifully and wonderfully made and they should be appreciated and celebrated for who they truly are. I think that when people think about autism, they think about the differences like the vocalizations. When we are in public and my sons will suddenly let out a long “eeeee,” people will stare. What I don’t think they see or understand is the sweet side of autism.
One hot, summer afternoon, my youngest son’s soccer team was posing for a picture. Well, posing is a loose term here. The team ranged in age from 3-4 so they were mostly squirming and jumping up and down, looking around, pretty much everything but sitting still and posing. Parents and coaches were helping and attempting to wrangle the children in their appropriate places. After quite some time of this going on, the photographer was beginning to get frustrated. My son, who didn’t understand why we were sitting still in one place for so long, suddenly leaped up and gave the photographer a giant hug. Before the photographer had a chance to compose herself or respond, the entire rest of the team followed suit and, in an instant, the photographer was buried in giggling, cuddling children. Her frustration turned to laughter as she told us nothing like that had ever happened to her before.
And, you know, it’s these moments that I see as a mother and as a woman of faith that I want the people who stare at us in public to see, so they can understand these children are truly gifts from God, and they are a part of God’s plan for my life. And how lucky am I? I am truly blessed to be able to raise these children that look at the world and interpret it in a completely different way than you and me. Do I get tired? Yes. Do I get frustrated? Yes! But my faith moves me forward. I give my family everything I have to give, all day, every day and I wouldn’t change a thing.
As told to Tiffany Erk by Haley Carter.
Dr. Tiffany Erk is a Muncie native and Ball State University alumna. She has worked in student life, leadership, and development for over 10 years. She is the mother of two daughters and has been happily married for 17 years.
If you connected with Haley’s story, you can reach her at firstname.lastname@example.org.
This story originally appeared in Facing Autism in Muncie, Indiana, a publication of The Facing Project that was organized by Interlock in Muncie, Indiana.