For years I have worked tirelessly to give my voice to autism, both through training providers about family-centered care and training parents to become advocates for themselves and their children. I have always tried to capture my son Josh’s story accurately, and have struggled with feeling authentic. Do I share my story or his?
When Josh became a teenager he no longer wanted me to share his story, so I worked at refining mine. When I was unable to do that, I stepped away from speaking publically about autism.
Our journey has been quite an adventure! Many ups and downs and everything in between.
In January Josh decided to make a video about his struggles with autism. He presented his story to the entire student body at a Martin Luther King assembly at his high school, Nathan Hale. His voice speaks volumes more than I ever could.
Thank you, Josh. I’m so proud of you! Keep talking…your voice matters!
Ten years ago, as a new employee in the department of Psychiatry and Behavioral Medicine, I was asked by a colleague to present with her to a group of trainees.
She was to cover diagnostic evaluations and I was tasked with discussing the impact of autism on families. How on earth would I manage to accurately capture the daily challenges that often are not observed in brief clinic visits?
My hope was to help them to “get it” meaning to see just how difficult it was.Short of suggesting we hold the session in my home for a first-hand look, I decided to make a video I called, “A Day in the Life with Autism” 24 minutes representing 24 hours in our unconventional life. It was well-received and since then I have been asked to share it with many different providers and students at Seattle Children’s and the University of Washington.
So much has changed in the past decade that it felt time for an update. This time though, I wanted to capture the bigger picture of our life and the lessons learned not only for providers but for parents who walk this path too.
Very young kids are not known for their ability to sit still. Understandably, parents get a little stressed when an adult with a sharp instrument attempts to cut those sweet baby locks. After the age of three or four though, most parents can reasonably expect that their child will be able to handle a haircut. For kids with autism who have sensory challenges, it can take years of practice before that tolerance is achieved.
Why is it so difficult?
I wish I had a dollar for every time I have thought to myself or said to her, “I wish I could get inside your body and see what you see, hear what you hear, smell what you smell, taste what you taste, feel what you feel”. If that was possible, I might be better able to address what makes so many things odious to her. Short of that, I try to imagine what her perceptions are in different situations. In anticipation of a haircut, for example I might ask myself:
Will she remember Miss Jodi, the miracle-worker who cuts her hair? Does she remember what we’re about to do to her? What must it feel like to have her head sprayed with the water bottle? To have a comb pulled through her hair? To have scissors so close to her head? Read full post »
My son has autism. His name is Arthur and he is 13 years old.
I have found over the years that my life shrinks and expands in direct proportion to what kind of day my child is having. And nothing causes my world to contract more drastically than a disastrous outing to the grocery store with Arthur. The vibrant colors and overwhelming choice in the mustard section alone can be overwhelming for me. Imagine how the cereal aisle must be for Arthur.
When Arthur is in sensory overload, confused or frustrated, he becomes dysregulated. This can translate into a screaming, pinching himself or others, bolting toward exits, or knocking over displays. How do other shoppers tell the difference between a child with a disability behaving in a way that is consistent with his or her diagnosis or an out-of-control bratty kid with lazy parents? They can’t and I experience the disapproving glares and the “tsk-tsk” to prove it.
I’ve abandoned shopping baskets filled with groceries, lurched after propelled carts, apologized for watermelons that served as bowling balls and quietly placed half-eaten candy bars on the conveyor belt. Read full post »
Oh how they strike fear in the heart of many a parent of a child with autism. Lest you think I am suggesting “Bah Humbug” to it all, let me explain.
They are supposed to be about so many things –from religious and cultural significance to gathering of family and friends, sharing gifts and thanks for each other. Sounds simple enough.
Perhaps never is there a time though, when both expectations and disappointment are so high. As parents, we’re influenced by our own memories of childhood and by the barrage of messages from mass media about what we absolutely must have and do and be in order for that picture-perfect celebration. Read full post »
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