Hear one of the many personal stories shared with Stand Up To Cancer.
John was diagnosed with autism in 1988 at about 3 1/2 years old. At the time, we were as sad as if he had died. Now that John is 25, he’s happy, helpful, and, most importantly, still making progress in many areas. He may not have the life that we envisioned when he was born, but it’s still a meaningful, productive one. I think that’s one of the biggest life lessons that autism has taught me: that ultimately, we can all be contributing members of society.
My beautiful, bright-eyed daughter Gabrielle, or Ellie, started speaking at 10 months and had an 800-word vocabulary by 18 months. Then, at 21 months, she stopped speaking and pointing, and her eyes looked “empty.” She started screaming for everything she wanted, and began to fixate on her fingers, lights, fans and music. We knew something was very wrong, but the pediatrician we consulted told us to wait it out. We even brought up the idea of autism, but were told that since our daughter did speak and was a girl, it was highly unlikely that she had autism. Our pediatrician had never heard of regressive autism—and he was trained at a top children’s hospital.
Flash forward 11 years, and my now 13-year-old is three inches taller than me and is bright-eyed once again. Through Applied Behavior Analysis (ABA) therapy, she has regained a lot of skills she had lost, and continues to learn new ones every day. She is verbal, and very good at telling us what she wants and needs, but she struggles with fine motor skills, basic reading and math, group learning, and social cues and conversation. Ellie goes to school for a half day and ABA therapy for [...] continue the story
I found out about my autism through the birth of my son, which might sound unusual. He was born 19 years ago and was diagnosed shortly thereafter. With time, I began to feel that I too was diagnosed with autism. Many of my friends diagnosed with Asperger’s Syndrome basically did an intervention and said, “Val, you’re busted,” It wasn’t that I didn’t want the diagnosis; over time, it was a huge relief. To know how to behave and be in different social situations is one thing, but you have to know how to feel comfortable in them. What if making eye contact with someone makes it impossible for you to hear their voice? There are ways you can advocate for yourself in these situations if you learn how to talk to people about it.
I’m often asked what a typical day is like when you have a child with autism. My son Camden is full of life, full of challenges and full of excitement. He is non-verbal, needs significant assistance and has several medical issues. So, while there are schedules to our days, a day is never typical. There are good days and bad days, and I’ve learned that simply building more good days is the best goal.
On a good day, we conquer our world together. Good days usually start when we both have had enough sleep (there’s probably a research study out there confirming my theory, but I don’t need to see it to know that sleep is key). Schedules work, pictures are used and we both see minute-by- minute successes. Camden eats his breakfast and helps clean the kitchen. There is lots of running outdoors. Smiles and giggles are mixed with a determination to get that awful work task (in his opinion) done, so he can get computer time. We go to bed exhausted, but tired is a really nice feeling after a good day.
A bad day is when I don’t have enough reserves to help him through the day. It may [...] continue the story