Posts Tagged ‘advocating’
Everyone’s Accepting of Autism—Until They’re Not
Everyone’s accepting of autism until you see my boy on the floor, mid-meltdown, and blame my parenting. The whispers and the stares as you walked past were not unnoticed, but my child needed me more than you needed my reaction. Everyone’s accepting of autism until his stimming doesn’t quite fit in your little box and you feel like he’s too old to behave that way. Everyone’s accepting of autism until you get annoyed that we cannot attend an event because it is not suited for our special needs child. Everyone’s…
Read MoreAutism Is In The News
Autism is in the news right now. And I keep thinking… There has to be an in-between space right now. If you are anything like me, this polar extremism makes me want to hide. And stay silent. I’m scared to comment. I’m scared to share. Like it’s a minefield and I don’t want to misstep. My son Cooper is 14 years old. Eleven years ago, we heard the words… Severe Nonverbal Autism. Boy, it about broke me. And yes, for anyone wondering, we knew it was coming. He had no…
Read MoreA Seat at the Table: Championing Severe Autism in D.C.
It has taken my husband, Michael, and me a couple of days to recover from four plane rides and three days of navigating D.C., but we are so glad we seized the opportunity to do it. Individuals with severe/profound autism and their caregivers/families are so often left out of the conversation and robbed of a seat at the table. We are isolated and forgotten, even though 27% of individuals with ASD are severe/profound. The Authentic Awareness Assembly event, put on by the National Council on Severe Autism (NCSA), gave families…
Read More5 Key Things Autism Siblings Wish Parents Did Differently
5 Key Things Autism Siblings Wish Parents Did Differently. Note: Autism siblings in this article refer to: – neurotypical siblings, autistic siblings, neurodivergent siblings AND those that are undiagnosed but “treated” as neurotypical In 2016 I hit my rock bottom. Even though I lived in my dream city, London, I was completely burned out. My own mother didn’t recognize me, I was battling with sudden panic attacks, anxiety and depression. Little I knew it was a blessing in disguise. This was a pivotal moment for me to start diving deep…
Read MoreWhy do I have to be ‘That Mom’
Why is it so hard to get services for our kiddos? Why do I feel that I am the only one who sees him? The real him. The fun, silly and loving him. Why do I have to annoy the school constantly….reminding them of who he is and how amazing he is? 4 weeks into school and every week (sometimes daily) it’s been something. He is not mean or aggressive….he is autistic and preverbal. He doesn’t understand what THEY want. He can’t communicate what HE wants. I’m saying what I…
Read MoreAdvocating for my Child Doesn’t Mean I am Trying to Cure Him
The small room is kept cold and quite. It only has one long rectangular table with 12 black cushioned chairs that have wheels at the bottom of them. The walls are painted light tan, with no pictures hanging from it, and the carpet is dark brown. You can not hear the sound of my heels walking to one of the chairs where I will sit for the next hour. It’s August and every room at the board of education is full and humming with excitement and nervousness for the upcoming…
Read MoreWe Don’t Need to Decide What is Worse
My ah-ha moment really has nothing to do with my son or his autism. But more about how moms in the special needs world view and treat each other. About three years ago, I met one of the most important people in my life. My close friend Carrie. She has a little guy who is 4 ½ and has nonverbal autism. My autistic 6 ½ year old is verbal. So, they are basically opposites. Carries lives pretty far from me, so we don’t get to see each other often. But…
Read MorePartners in PolicyMaking-Sign Up is Now Open
Hey all! Many of you ask how I jumped into the advocacy world. How did I start? Well, it’s quite simple. As my autistic son got older I started to see all the things that were wrong with the way people with disabilities were and are treated. It didn’t seem right. It didn’t seem fair. So, I started openly talking about things like Medicaid, inclusion, and disability awareness. I want you to know that when my son was diagnosed with autism I remember specifically thinking…I don’t want to carry the…
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