Posts Tagged ‘cerebral palsy’
We are Parents First
In the summer of 2020, I developed hives. It started with one on my hand, then a couple on my arms, and the next thing I knew…my whole torso was covered. The current heatwave, of course, wasn’t helping but having been in the air conditioning, I knew that wasn’t the cause. It was at the point of no return, the palms of my hands and the soles of my feet were riddled with splotches of itchy red bumps, that I called my local urgent care. A telehealth visit with a…
Read MoreInspirational Boston Marathon Dad Dick Hoyt Dies at 80
I’ve heard countless stories from parents of adult disabled children about the prognosis and future predictions they were given. And not a lot of them were good. Parents were told to institutionalize their babies. Even, ‘go home, try again.’ And one, ‘forget about this one, have another.’ It was no different for Dick Hoyt and his wife Judy in 1962 when their son Rick was born. Rick was diagnosed as a spastic quadriplegic with cerebral palsy, as a result of oxygen deprivation to Rick’s brain at the time of his…
Read MoreBittersweet Birthdays
My son’s birthday is this week and I am planning a party for him. He will be 14 years old and we are having a Sesame Street themed party with an Oscar the Grouch cake. The party guest will be me, his dad, his younger sister, and his grandmother. That is his limit. More than four very familiar people will overwhelm him. This is what birthdays with severe autism and developmental delay look like for us. When my son was born, I had several friends who had baby boys around the…
Read MoreSilence
Early this morning, I took my middle son, one of the twins who is Autistic, with me to run some errands. I did my usual commute to town which is about thirty minutes away. I went through the drive thru and grabbed an iced coffee, went to our pharmacy for medications and then I grabbed some breakfast. As I was in the last drive thru for the morning (which was crazy long), I started to ponder to myself… Wow it’s so quiet in this car. I thought back from home,…
Read MoreLetter to My Daughter on Her Birthday
I cannot believe it has been 6 years since I held you for the first time. I remember laying you on my chest and looking into your big blue eyes. In that moment, I knew I would never love anyone the way I do you. Since then, you have made my world go ’round. Celia, you complete me in ways I didn’t know I needed. Not only do you complete me, but you show me what true love is and how to love more. Having you as my little girl…
Read MoreThe End of ‘Wait and See’
“A diagnosis is not a prognosis,” a wise doctor once said to me, as I was deep in a panic about what Flynn’s life would be like. Over time, it became my mantra and it comforted me as we were transferred from specialist to specialist. “A diagnosis is not a prognosis,” I would repeat to myself often. After countless appointments and tests, I grew comfortable with the labels being thrown onto the table and gained medical knowledge, preparing myself for the day that we got the answers we were looking…
Read MoreThe Power of Perspective
A recent conversation left me thinking about the power of perspective. While at a child’s birthday party with my daughter, a dear friend asked me how Jack is doing. Jack is my 12 year old son who has severe autism, developmental delay and cerebral palsy. I got excited to answer her question. “He is good!” I said. Gosh it felt great to finally say it. For the past five years when people asked me about Jack I would stop and think for a moment. Do I give them the real…
Read MoreA Letter To The Counseling Faculty of My Graduate Program
To the Counseling Faculty, You were not sure how I would be able to be successful in your graduate program because I used a communication device and had physical limitations. You had concerns about how I would keep up with the fast pace of the courses because I need more time to complete coursework that were to be done during class. It is no surprise that I was not like the other students in my cohort, but you still accepted me into your program. During my time as an undergraduate,…
Read MoreThe Battle of Perfectionism with a Physical Disability
Perfectionism, everyone has experienced it in some way. For certain people, it commonly occurs within academics, whereas for others, it can be apparent in their job or home. However, for people with disabilities, perfectionism can be heightened due to the need to prove society wrong, and turn the “can’ts” into “cans.” I am a graduate student, studying to be a mental health counselor. How does that statement alone make me unique? Well, I use a communication device due to cerebral palsy. I am the first person in my program to…
Read MoreA Letter to the Doctor Who Committed Medical Malpractice
I was born on October 20, 2001. My parents were expecting identical twin girls and my mom had been at the hospital, on bedrest, for the past 5 weeks due to an incompetent cervix. You were the doctor who consulted with my mom’s doctor. She had an infection in her placenta and you made the decision to take her off of the medication that was keeping the infection from spreading and keeping my sister and I from coming. She began complaining of contractions on October 19, but the contraction monitor…
Read More