April is Autism Awareness Month.
To those who are not aware of autism and who it may affect, I want to broaden your mind. Although I could fill this post, and many more posts, with the facts about autism, or Autism Spectrum Disorder, as it’s more commonly known, I’ll only mention a few:
- ASD affects 1 in 68 children.
- ASD is more common than childhood cancer, diabetes and AIDS combined. It’s one of the fastest-growing developmental disorders in the United States.
- You cannot get ASD from vaccines.
- I have a sister and a daughter who have ASD.
To best broaden the minds of those not as aware of autism as others may be, I want to describe my own ASD experiences. As I said above, I do have a sister and a daughter with ASD. They are two of the most special and important people in my life. Not because they have ASD. But because of how remarkable they are.
My sister Peggy is 35 years old. Had she been born before 1984 she probably would not be alive today. She is a twin, born eight weeks prematurely. She died, and was resuscitated, three times after being born. At three days old she developed hydrocephalus or a build-up of fluid in the brain. She was fitted with a hydrocephalus shunt which will remain inside her for the rest of her life. She has had it malfunction many times throughout her life and as she grew, she had to have it lengthened.
Peggy didn’t walk until she was three and began talking at age five. It was quite clear from an early age Peggy was autistic. She would constantly flap her arms and hands, rock excessively (she was known for destroying many beds and couches from her rocking!) and became obsessed with letters and numbers. After trying to mainstream her into the public school system, they discovered Peggy would best thrive at a residential school. Having Peggy leave our home and attend and live at a school forty miles away was very difficult. We only got to see her on the weekends and the transition from one extreme to the other was rough on all of us. At age 22 Peggy graduated from The Evergreen Center and moved on to where she currently is. She lives in a group home not very far from me. She attends a day program and is very active in the community. When I see her each week I can tell she loves where she lives. One of her favorite activities is going out with me each weekend and going to lunch and doing a little shopping. She still flaps and rocks now and then, but it’s nothing like it used to be. She hasn’t destroyed furniture in a long time! Her obsessions are now play balls and clocks. Her number fascination still stands with her love of the numbers 3, 4, 8 and 11. In fact, all her clocks, always must have one hand on the 11 and the other on the 3. So in Peggy’s world it’s always either 11:15 or 3:55.
One thing I love about Peggy is that she’ll love you unconditionally. She is the easiest to please and the easiest member of the family to get along with. And contrary to the fact that people with ASD tend to not be affectionate, Peggy is just the opposite. She’s also a social butterfly and we always say that if Peggy were not on the spectrum, she’d probably be out and about all the time.
One thing I’ve learned from her is how to love life. Because as tough as Peggy’s life has been, she still seems to really love it.
When you have a child, you always want everything perfect. You don’t want to believe there could be anything wrong with your child. You don’t want to have in the back of your head the thought of “what if my child has ASD”?
After eight years of trying, Melanie was born in 2005. It had been a completely normal pregnancy. I didn’t even have morning sickness. Aside from her being born via C-section, everything was fine. She slept through the night at two weeks. And there were hiccups along the way but we got over them.
She rolled over at three months. Her first tooth came in at four months. Was not a finicky eater until she was introduced to solid food. Made great eye contact and reacted appropriately to those around her. She smiled a lot. Then it was discovered she was not as quick to sit up as most six-month-olds. She could but it seemed to be an effort for her.
Her pediatrician referred us to Early Intervention. From them we learned Melanie had low muscle tone. Which is also why when she began to crawl she “combat crawled” by slithering around on her stomach. She received occupational and physical therapy. Then speech therapy when she wasn’t speaking as much as she should have been for a one-year-old.
We really began noticing things with Melanie when preschool began. She didn’t socialize with the other kids. She refused to eat or use the bathroom at school. She had great separation anxiety.
As she grew older more things became apparent: she didn’t like loud noises, especially in public places (such as the hand dryers in restrooms), there were certain words she would freak out at hearing (mainly “accident”, “death” and “blind”), there were certain things she didn’t like because they were “creepy” or “felt weird”. I really knew something was wrong when she was seven and was invited to a friend’s birthday party at Chuck E. Cheese. Up to that point she had seen all the commercials on TV for the pizza place and always talked about wanting to go. For Melanie the party was a disaster. She had what would become the first of many meltdowns. To this day when we throw a birthday party we cannot sing “Happy Birthday” because she gets upset.
I knew from my experience with my sister, Melanie did not have autism. But I highly suspected she had Asperger’s. My suspicions were confirmed when Melanie was nine and we finally, after months of calling and researching, was finally able to connect with a doctor who would make a clear diagnosis.
That was five years ago and it’s been a long road since then. We’ve gone through countless therapy sessions, ABA therapy (Applied Behavioral Analysis), cognitive behavioral therapy, medications, meltdowns, refusals to attend school, reward charts, routine adjustments. You name it, we’re still going through it. As we delve deep into the teen years, we know there’s a lot ahead for us. All I know is that we’ve made it this far so we’re going to keep going. I know Melanie has the potential and ability to one day drive a car and hold down a job. She’s already expressed an interest in getting a little job next year when she turns 15.
I look at my daughter with pride when I see how far she has come and how much she has achieved even at a high anxiety level. Her loves have changed from her childhood fascination with The Flintstones and Looney Tunes to adoring The Muppets, The Fraggles, anything Jim Henson, Minecraft and the TV show “Riverdale”. She’s gone from wanting to be a chef someday to wanting to be an interior designer. Tomorrow it’ll probably be something else. And that’s okay. She has a creative mind and amazes me with the stories she comes up with. I always tell Melanie that she can be whatever she wants to be. Maybe she’ll be a writer. Who knows? For Melanie the sky’s the limit.