Something that people may not be aware of, unless you have a family member with a disability, is how much harder our families work to “even the playing field.” The phone calls, the emails, the meetings, the appointments, the therapy, the rearranging of schedules, the accommodations, the constant fight for “fair.” It is consuming and exhausting. My name is Elissa, and I have two little girls. My oldest, Aleena, is 5 and in kindergarten. My youngest, Lexi, is 3 and is in daycare/preschool. Lexi also has autism. Though Lexi is…
I am not autistic, my son is. And I spend much of time trying to understand him so I can be a better advocate. How he thinks. How he processes. Why he likes certain things. Or doesn’t like others. And how I can help him understand this world that wasn’t really made for him. His brain often feels a bit confusing to me. Mysterious even. Intriguing at the same time. Autism. Blurring the edges a bit. Touching all of his parts. Yesterday, as we were driving together, Cooper saw a…
I blinked. I closed my eyes for that microscopic second and you grew. Everyday when I watch you float through these halls, a whisper in my heart still sees you as that fragile, tiny soul weighing just a pound coming into this world. I have to pinch myself back to reality watching you giggle so beautifully these days, as my body still tenses, remembering every sound from the ever-chiming hospital monitors. I’ll never forget that warning sound. It’s woven into my being. I look at you, my beautiful boy, and…
I have been living the autism parenting life for 12 years now. We are in the middle. We made it through the wondering and worrying. Past the sting of the beginning. I like to say we all settled into this secret world. Me. My husband. Cooper. And his siblings. We don’t know anything different. And we couldn’t imagine Cooper being anything other than himself. We don’t whisper autism. We share it. Loudly. Proudly. And with conviction. He is Cooper. Something happened though. Something I knew would come one day. I…
Something that autism has gifted our family is that it has opened our eyes to another world. We get to see the lives of many people affected by disabilities. When we are at a sporting event, camp, or conference for my son filled with children and adults of all different abilities, I see more love and acceptance than anywhere else. I love that both my children are surrounded by it. They have seen the beauty in differences from the beginning. At the same time, I have one foot in the…
Today, I watched you slip away. It happened bit by bit, piece by piece. Slow at first. Then all at once. The elephant in the room got you. The one that steals you from me now and again. The one I refuse to lose you too completely. Anxiety. You have it. Not me. I am just the mother. I am anxiety adjacent. I belong to a boy with anxiety. I see it coming. I feel it and hear it. Other people have no idea. But I do. At 4 am…
As I sat on the floor beside the bathtub last night, I had a full on back and forth conversation with my daughter. Language is something so many take for granted it’s something I took for granted before I had a child that didn’t speak. If you would’ve told me that my daughter would speak her first word at five I would’ve thought you were crazy. But at five years old it was the first time my daughter spoke. And today, my daughter is a couple of months shy of…
Without the voices of strong autistic women in our community and the support of people like my mom, I wouldn’t be the person I am today. I was recently contacted by an autism mom who told me about her 30-year-old daughter on the autism spectrum and is about to have a baby. She said that she was proud of me for using my voice as a public speaker and self-advocate to spotlight others. If you are reading this, I don’t know why but this instinctively made me think of Women’s…
My son Cody was diagnosed with severe autism at 17 months. As a parent I had no idea what that even meant. I knew no one on the spectrum. I remember sitting in a sterile office while getting our diagnosis watching my little boy wander around the room opening and closing drawers, trying to leave the room while the doctor sat calmly stating what my son’s future would be. Bleak at best. Place him, he said. You’re both young. Place him? We want him with us. We planned for him.…
Nearly every parent worries about their child’s future. When it comes to my eight year old autistic son I worry on a heightened level. Recently, on a podcast I co-host, Table for Five No Reservations, we have interviewed parents of disabled adults and some disabled individuals themselves. All with different levels of need and in different areas. In some ways it gave me hope about the future but in many others it scared me. A blatant recurring theme hit me. Opportunities and resources astoundingly decrease when people like my son…
