Ellie’s Story

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

Valerie’s 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.

Camden’s Story

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

Zidlow and Eli’s Story

I had just asked my son Elijah, who is fifteen, to shut down his computer and the TV and go to sleep. The cartoons he was watching had a bunch of different voices and sound-effects that were driving us crazy, so he said, “Okay, Dad,” and then he shut them off in front of me and jumped into bed.

I closed his door and headed to my bedroom, when I heard that same racket coming from his room again. So I got really annoyed and stormed back to his room, opened his door and said, “I thought I told you to shut those stupid cartoons off!” But he was still in bed, and his computer and TV were still off. So I asked him what was going on.

“I just heard those crazy sounds again,” I told him. He sheepishly said, “Okay, okay, you caught me. It was me. ”

“What do you mean it was you?”

So he started to do four or five different voices, asking questions and answering them in full conversations, back and forth, body and facial expressions in full force. I stood in his doorway, smiling, and in awe, yet again.

I will share with you a view of a [...] continue the story

Father and son, doctor and grieving family member

The edges of Cameron’s lips rise undeniably toward the clear blue sky. His legs move methodically. One motionless on the scooter and the other periodically kicking to propel himself forward. He weaves in and out dodging my shadow as I jog beside him.

I struggle to keep pace. My breathing unsteady and labored. My joints aching. And my brain foggy from lack of sleep and replaying the events of the day.

***

The hospital was uncharacteristically quiet. Even for 5am. My eyes fluttered with fatigue as I willed my mind to focus after two nights of countless interruptions. I felt no joy in this early morning excursion.

The room was lit by a small lamp. A woman in her forties sat with a young child curled on her lap. A boy, Cameron’s age. My eyes adjusted to the absence of light.

The middle aged man lying on the bed looked far older then reality. He took deep irregular breaths. Each pause a question. His wife held his hand gingerly. I inhaled the seen cautiously. I couldn’t help but think of my dad. Were his last moments like this?

The woman dabbed her eyes with a tissue. She tried to move slowly to avoid waking up the [...] continue the story