Posts by Amanda DeLuca
Autism, DIPG, and the Unbreakable Bond of Siblings
An autism diagnosis for my son, Jackson, nearly nine years ago. A brain cancer diagnosis of DIPG for my daughter, Monroe, just weeks ago……. I panicked in the small emergency room nurses break room when it happened. No, I want to just take her home. Let’s pretend this never happened. This can’t be happening. It isn’t true, she’s only seven. I needed a moment to say all the things that weren’t helpful before I could process the diagnosis that was being handed to me in a suitcase with a weight…
Read MoreA Shared Journey: Autism, Connection, and Lifelong Friendships
My family attended boo at the zoo with two other families. Couples we’ve known since college, the girls and I were roommates, their husbands and mine were fraternity brothers. Somehow the stars aligned and we were able to get all of our families together. It was the perfect day. I can’t believe where life has lead all of us these past seventeen-ish years. College, engagements, first jobs, marriages, babies, these families we’ve all built. It was incredible to see all of us together in one place today. We started the…
Read MoreMore Than Just Caregivers: The Power of Connection
This weekend, I had the honor of pouring into over two hundred special needs caregivers. I told them about how much I wondered what I could speak about that would inspire them, be something new they hadn’t heard before, and give them something tangible to put into action. I asked them to pause each day and ask themselves three basic questions to clear space to find gratitude and joy every single day. Even on the hardest days, there is always something to be grateful for. In a world where we…
Read MoreThe Unveiling of Autism
There comes a day where you realize that admitting autism is hard isn’t a choice you have to make, but rather it’s a moment in time where the struggle of special needs parenting goes from secret to unable to mask it any longer. This switch happens when people start to recognize meltdowns that are no longer age appropriate, and it feels like every eye is on you. It happens when aggression kicks in to your daily life, and you realize there isn’t a safe space to go anymore because your…
Read MoreWhen She Asked, “What is Autism?”
But mama, “What is autism?” My sweet daughter innocently asked me. I let out a long sigh I had been holding in while she asked. And I let out what sounded like a laugh, only because it was a hard question that I truly didn’t have an answer for. “What is autism?” That’s a question I’ve asked myself so many sleepless nights. How do you explain autism to another person, especially a child. While I am still searching for the answer to “what autism is”, I do have a really…
Read MoreHow To Dance In Ohio – The Musical: A Gift of Autism Awareness and Representation
One week ago my mom and I stepped off a plane in New York City, we didn’t go because of the holiday window displays, for the Rockefeller Christmas tree, or to visit the Today Show. We went to see How To Dance In Ohio – The Musical. “Hey, I think I heard about that!” Was the most common response I received when I told people about our last minute trip just a few days before Christmas…… you probably saw it on the Macy’s Thanksgiving parade! “Based on the award-winning HBO…
Read MoreYouth Find a Fulfilling Career Choice in Disability Services
Dear high school seniors, I want to talk to you about a group of individuals I wasn’t thinking about at your age. A group of individuals like my son, who need compassionate, patient individuals, just like you, who make a huge difference in their life and the lives of their caregivers like me. Choosing to work with individuals with disabilities wasn’t discussed at any career day, on any career assessment paper tool, or the college programs I was looking at….. but I wish they were. On a daily basis people…
Read MorePrioritizing Quality of Life: A Reflection on Supporting My Autistic Son
This single concept of truly breaking down the components and supports for ensuring we honor the person’s quality of life may be the most impactful thing I’ve ever experienced. Quality of life focuses on a person’s strengths and interests, not their disability. The “QOL” or quality of life approach helps you learn to respect what a person wants, needs, and values in life… For the past two and a half years, our family has struggled with my son, Jackson’s, behavior, aggression, “epic meltdowns,” lack of compliance… I need him to…
Read MoreBack to School Plan for Special Education Students: Expert Tips and Strategies
If you are the parent to a child who receives special education services, have you started to prepare their back to school transition plan? My son will be entering third grade in just a few short weeks! Every day we talk about the first day of school, the number on the calendar, seeing his friends again for recess and his favorite: gym class! Heading back to school is a huge transition for our kids. Some are off to new buildings, some have new teams, some are eager to go back…
Read MoreAutism, Aggression, and the Power of Remembrance
Every night I lay with my son until he falls asleep. I’ve done this since he was a baby. I sneak out of his room and reset our home for the next morning. Tonight while we were laying down he said to me. “You cried in the month of June, on a Thursday, you ran away to the sun room, and I came to tell you sorry.” I said “why did I cry buddy?” He turned his head to face away from me on his pillow and replied “because I…
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