We mentioned in our last post that April is Autism Awareness Month. In honor of that, I wanted to share a story of a good friend, Karen, from my church. She has provided her story for us to post about her life, mothering a child with autism.
Karen is one of the strongest women I have had the privilege of meeting. I hope you enjoy reading her story as much as I have.
On July 7, 2003, my oldest son, Robert Chaytor Green was born. It was a long, hard delivery that ended in a C-section, but we were so happy he was finally here. We stayed in the hospital for 3 days and everything seemed fine – so they sent us home.
Then, for the first 3 weeks of his life, we endured hours and hours of screaming. He wouldn’t stop. We tried everything that anyone would tell us. His tummy was always full of gas, he spit up everything and we even had projectile vomiting. He was born constipated and nothing, I mean nothing worked on that at all.
It was nothing like the other stories we heard, of how wonderful it was to have a baby. I mean we knew he would cry, but not this much, for so long. We cried right along with him.
And then we finally got the bottle and formula right. The gas went away, but the constipation stayed. I didn’t think much of it at the time.
He seemed to be developing just a little bit behind other infants his age. The doctors just kept telling us that all kids develop differently and that he really wasn’t that far off.
But we noticed that he didn’t babble like other babies. He also really didn’t like to be swaddled and rocked. Only the car would put him to sleep.
The differences really kicked in about 15-18 months. There was NO talking or babbling. He was walking and running, but it always was the same movements over and over. When we took him outside to play, he would just run around the house in a circle for what felt like forever. I swear you could set a timer to him as he passed the front door over and over again.
He wanted nothing to do with other kids.
I called my pediatrician and explained the repetitious behavior. I explained how he would walk up and down the stairs for HOURS………..up, down, up, down.
I explained how he didn’t answer to his name. How his father and I would have to go to him and say “Chaytor, time for bath, but that he still didn’t respond.
It was like he was living in his own world. And we were allowed in some of the time.
My pediatrician said “He’s a boy. Boys take longer to talk and do behavior like you explained. He will grow out of it”.
But he didn’t. I now know how scared some doctors are to say the “A” word: autism.
I didn’t want to think anything was wrong with my baby. I kept hearing my pediatrician say that all kids develop differently and boys take longer to talk. I turned my back from it.
Until someone I trusted threw it in my face.
Chaytor’s daycare provider was a former special education teacher. She had mentioned tid bits here and there about how Chaytor was behaving, but she was never forceful. Until one day, she passed me a mass mailing about free child developmental testing in the county. And she said it straight: “Karen, something is wrong with Chaytor. He needs help. Go!”
So we did.
I will not go through all the testing and doctor’s appointments; it was a crazy time in our lives. And to top it off, we lost Robbie that very Fall that all of this was really getting under way. Robbie was an amazing father to his only son. Chaytor was blessed to have him those first 3 years of his life.
Because I wanted nothing to do with him (Chaytor).
I hated that I had a son that something was very wrong with, that society would judge as not being good enough. Robbie handled it so much better than I did. But now, I HAD to handle it.
Chaytor entered an amazing preschool program in our county when he was 2 ½ years old. It was a program that placed developmentally delayed kids with “normal” developing kids the same age. We were blessed to live in a county that had this free program through the school system. At the same time he was receiving services from the county that included an occupational therapist who would come to our house 1 hour a week to work one on one with Chaytor. But it wasn’t enough. So off we went to Children’s Hospital for more testing. No one would actually say autism at this point- but it all seemed to be pointing in that direction.
We found out he had digestive problems with gluten (a common thing for children with autism). That is why he screamed the first 3 weeks of his life and why he was always constipated. Gluten can really mess with his system. He has to take supplements and we watch his diet now.
For 3 ½ years, Chaytor would receive OT and Speech Therapy services from Children’s Hospital in addition to the preschool program in the county. But the IEP kept saying developmentally delayed.
We all knew it was autism.
I was embarrassed to take him places. He would have these terrible temper tantrums and meltdowns. He was so strong it was like wrestling a bear to have to pick him up and not drop him when it was time to leave. He would even head butt me sometimes when I had to pick him up because he would not come when I told him to. I remember the worst one occurred at the YMCA pool: He didn’t want to go. I picked him up in the pool; he head butted me so hard I dropped him in the pool. I fell backwards. I was so embarrassed. I totally lost my temper at this point.
You see, I was embarrassed of my son. I hated that attention that people give you when your kid acts different. I was stared at and whispered about while I was trying to drag him out of the pool.
I fought so hard to change my son. I left him with grandparents and sitters so I could just get away from him and this terrible, single mom life I had to live.
And then I found God. Well, then I let God in. He’d been there the whole time and I was too selfish and stubborn to realize.
And my life with my son changed. My relationship with my son changed.
And I stopped trying to change my son. I changed me. Well, God changed me.
And I learned to accept my son for who he was. I stopped fighting against what he couldn’t do and focused on what he could.
And everything changed.
One of his preschool teachers, Debbie Lickey, taught me how to work with what I had in Chaytor. The teachers and assistants there were awesome and helped me so much. I remember the first thing they taught me was to “count Chaytor down” when it was time to change an activity. At first, it was very hard. Chaytor didn’t quite understand what “5 minutes left…..4 minutes till we go, etc.” meant. But they used it at school to help him transition through the day and eventually we got it at home. The meltdowns slowly went away. I still use it today.
I stopped being the “woe is me” mom. I looked at my son differently and loved what I saw. I stopped making excuses for his behavior in public and just started ignoring the stares and whispers.
And he in turn, became a happier child. He started wanting hugs and cuddles.
And I finally learned to love my son for who he was, not who I wanted him to be.
Chaytor is now 9 years old. He is in a mainstreamed classroom but is pulled out for math and reading.
He has always made honor roll.
My son’s memory is amazing. Even though his biological father has been gone for 6 ½ years, he can still tell me details about Daddy.
What is amazing is that he tells me things he remembers from before he could even talk. We thought he was in his own world, not paying attention to us – he just couldn’t speak out.
I am not saying life is peachy keen all the time. We still deal with his autism every day: from school work to sports to bullying from kids who don’t understand him. And it’s hard and yes there are times I want to run away and just have a few days without all if this!
But it is easier since I have accepted my son for who he is. We work with what he has and strive to help him learn new skills and concepts.
When I talk to other parents who are having difficulty with issues like these, I remind them of my motto:
You don’t need a high school diploma to get into heaven.