family-advocacy
I am the proud father of an amazing little boy, created and designed by God, individually and perfectly, who has a diagnosis on the autism spectrum, and whose name is Israel. As a man of color raising a little boy of African ancestry who has a diagnosis on the autism
reflections
We’re pleased to introduce a new series for the blog: “We’re In This Together” with our LL blog master, Jeneva (who’s also the author of our “Sharing the Journey with Jeneva” series). As parents, caregivers, and self-advocates who've struggled with unknowns, isolation, fear, stress, and
mitochondrial-disease
Liz Randolph attends Monroe Community College where she is completing her associate’s degree in Health Studies. Her goal is to become a nurse practitioner. She is a member of the Phi Theta Kappa Honor Society and the Co-President of the Holocaust, Genocide, and Human Rights Project at Monroe Community
wheel-chair
I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.” People share it because it feels inspirational that
friendship
I had taken my daughter Penny to the Metropolitan Museum of Art in New York City. After a morning of Penny marveling at the masterpieces, we stopped for lunch in the cafeteria. Penny has a rare neurological disorder called Aicardi Syndrome. She uses a wheelchair, has a g-tube, has intellectual
reflections
I wish I were a battery, so I could plug in and recharge. I posted this on Facebook today, and a kind friend responded, as one does, that humans recharge by unplugging. I said I didn't know about that. I do wish I could recharge by being plugged
reflections
I never thought I’d get to write this to you, and so I’m not sure quite what to say. You start kindergarten tomorrow, your first day of school, and in a life filled with so many firsts we never expected, this one looms large. It feels significant, heavier,
immigration
Reports by the New York Times, Huffington Post and Yahoo News, among a myriad of additional media outlets regarding the treatment and conditions in detention centers all over the southern border are chilling and infuriating. We’re learning that U.S. Border Patrol agents are confiscating children’s medication. They
the-aca
The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the
autism
“The greatest tragedy that can befall a child with Autism is to be surrounded by adults who think it’s a tragedy”. ~ Ellen Notbohm Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards,
reflections
The realization hit hard, like a punch to the gut. Almost as hard as the day I learned my son has Cystic Fibrosis, an incurable fatal illness. I’m nearly 39 years old, have always considered myself an ally to marginalized communities, and have loved all people of all varieties
diabetes
It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead! My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about