Happy 95th Birthday, Mom!

~ joannedesimone ~ 3 Comments

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Once, when Benjamin was very young, my mother came with us for a regular neurology appointment. Back then, Benjamin’s seizures were not under control, and my conversations with Dr. Gold were a mix of the good and bad realities that accompany mothering a child whose diagnosis puts him at risk for life-threatening complications. We knew that Benjamin’s disabilities were severe and that his medical complexities would grow.

While I don’t remember the details of the visit, I remember that Benjamin was happy. He has always been extraordinarily happy when he’s with his grandma. The only reason I remember this particular appointment in the blur of my collection of neurology appointments is because Dr. Gold made a comment that has escaped me, but I can still feel the awkward pause that hung between us afterwards. My mother filled that space with all the pride a loving grandmother could possess. She smiled, extended both her hands toward Benjamin, and said, “Look at what she gave me.” Continue reading →

A Long 24 Hours

~ joannedesimone ~ 9 Comments

The past 24 hours have been exhausting. It’s not an unusual statement for a parent. For me, it started with Benjamin having a seizure during dinner last night. It was a big seizure; one he wouldn’t recover from without emergency medication. I can spot them immediately. There’s something about the way his eyes wander, his hands sweat, and his arms suddenly release, so I can easily move his elbows away from his body. After administering the valium, I spent the next seven hours monitoring his breathing, wiping his face of vomit, willing him to sleep peacefully for just a little while, and hoping that when he woke, he would look at me directly when I called his name. I showered him somewhere around 1 a.m. and, convinced that he’d sufficiently emptied his stomach and wouldn’t retch again, administered his regular seizure medication through his feeding tube while he was sleeping, and monitored him until 3 a.m. while doing laundry.

Continue reading →

Seven Months to Publication

~ joannedesimone ~ 2 Comments

This past weekend, Sebastian asked me, “How many pages are in your book?” Maybe he’s trying to calculate how long it will take him to get through it. I’ve insisted that he read it before it’s published.

Fun Fact: Sebastian helped me choose the book’s subtitle: Raising Children with Disabilities Through Lessons Learned in Dance.

To answer his question, it’s 243 pages long. My younger self could never have imagined writing an entire book. To find out a little more about my work ethic, check out my interview with Bold Journey.

CanvasRebel

~ joannedesimone ~ 5 Comments

JoanneDeSimone--Media

Many of you know that I have been working on a memoir for a long time. Publishing a book can be a long and difficult process. No joke, I started writing my manuscript in 2011. Parenting two children with disabilities taught me a little something about perseverance. I’m happy to officially announce that Fall and Recovery: Raising Children with Disabilities Through Lessons Learned in Dance will be published in August 2024.

You can read more about it and get a sneak peek of the book cover in an interview I did with CanvasRebel.

Enjoy!

Photo Credit: Art by Corie

Congratulations, Lawrence Sapp!

~ joannedesimone ~ 3 Comments
Lawrence Sapp

When we were first looking into inclusive college programs for Sebastian, many of the DIII schools I spoke to told me he was ineligible to compete because NCAA regulations did not allow for non-matriculated students. As a special needs parent, I know that in order to be an effective advocate, I can’t solely rely on what others tell me. It is my job to come to the table fully educated and with a firm grasp on my son’s rights. I was genuinely curious to find out if this eligibility issue really stemmed from the NCAA or the individual colleges. That central curiosity led me to research the NCAA regulations and connected me to Dee Sapp.

I met Dee in a Facebook group. She was also seeking a waiver for her son Lawrence, who is an accomplished swimmer and Paralympian. You can read more about him on his website. 

Like Sebastian, Lawrence dreamed of competing at the collegiate level. I am thrilled to say that Lawrence is currently a student in the Succeed program at the University of Missouri-St. Louis, a DII school, and will be competing on the men’s swim team this year. While both Sebastian and Lawrence are fulfilling their dreams of becoming collegiate athletes, their journeys to getting there were very different.

Continue reading →

Fajr Williams, RIP

~ joannedesimone ~ Leave a comment

Last week, I came across this story about a New Jersey student with disabilities who was accidentally strangled to death on her school bus.

“In the last minutes of her life, 6-year-old Fajr Williams flailed her arms and legs, shrieked or gasped twice and kicked the window of her school bus.”

Apparently, the bus aide was wearing ear buds and was too preoccupied with her cell phone to realize the child was dying.

Continue reading →

Sebastian’s First Byline

~ joannedesimone ~ 6 Comments
Sebastian submitting his college application in 2021.

Sebastian spent the entire summer before his bridge year in high school working on his college essay. To start, I asked him to make some bullet points jotting down his strongest memories in order to brainstorm for a topic. Sebastian had a truly wonderful high school experience, so I was excited to see what he came up with and I wondered what I might learn about my son.

Writing doesn’t always come easily for Sebastian, but to my surprise he came up with a topic rather quickly. Unsurprisingly, it had to do with one of the few difficult situations he had to manage in high school during his freshman year.

Continue reading →

Birthday Reflection

~ joannedesimone ~ 12 Comments 
I miss when you were little 
When I could hold you in my arms
When your limbs moved more freely
When it was easier to take you out into the world

I miss the way you loved to eat
And how you were always able to spit out the peas in any meal
I miss the days when your flesh was unmarked by surgeries 

There are days I think I’m too habituated to this life
I convince myself that none of this ever hurt
Yet shockingly, I just had to stop writing to get a tissue

The sound of today’s tears hitting my shoes
Puts me right back to the day I sat in the doctor’s office
Drip
Drip
Drip
Onto his leather chair
And heard for the first time
You would never walk, talk, or use your hands

This morning I walked into your room
You were so still
I did what I have done for the past 24 years
I held my breath
Moved closer
Scrutinized the color of your face
Strained to hear your breath
Watched for movement
And exhaled when your continued life was evident

While I am more at peace with this life
And the perfect way you’ve lived in it
It is still too easy
To fret
About your place in the world
If Daddy and I aren’t here

You have always been my beauty boy
That has not changed
Looking into your eyes
Hearing your laugh
Has always made up for what the world lacks

When I scroll the pictures of your life
They reflect joy

Thank you for your joy

For it allows me
To live each day without weighing what is good and what is bad
It keeps me from fantasizing about some alternative life
Where you have a home, a job, a wife, and kids of your own
Where Daddy and I can retire and travel and lament about an empty nest

From time to time 
I still allow myself to grieve
For my younger self
Who languished in make believe scenarios 
Then I relish in being an experienced mom
Who knows there’s no sense encouraging those disillusions
And allowing them to taint our lives

You are you
You are more than enough
There has never been a day in the last 24 years that you were not enough

I can only hope that you know
The only gift I have ever strived to give you
Is to match the love you have given me

Happy birthday Benjabeauty

Good Morning America

~ joannedesimone ~ 4 Comments

Earlier this month, Sebastian and I filmed a segment with GMA3. It aired today. You can watch it here.

It is my greatest hope that our message reaches every student who plans to attend an inclusive college program and wants to participate in NCAA Division III sports. I want students and coaches in elementary, middle and high schools across the country to know this is something they can work towards. Most of all, I want inclusivity in schools to grow to the point that all students with disabilities know that they truly belong in every aspect of their academic communities.

Since our story came out in the Philadelphia Inquirer last month, a lot of my friends have called to say they admire my tenacity. I’ll admit, when I first approached Gwynedd Mercy University to help us secure this waiver, it was never my intention to take no for an answer. I was ready with several back up plans if our first effort failed. While it’s true that I have been an advocate for a very long time, it was only during my preparation for this GMA3 piece that I realized what drives this- not taking no for an answer- attitude.

Years ago, when we lived in Brooklyn, Sebastian had a particularly difficult kindergarten experience. The school didn’t want him, but they didn’t really help us find an appropriate school either. Every day I would walk Sebastian to school knowing there would probably be some kind of negative report later that afternoon. Every day my five year old autistic son, who struggled to communicate, would look me in the eyes and say, “Find me a new school, mommy.” And I couldn’t make it happen. Every day I knew I had failed him. I had allowed a system to fail him. So, I made it my mission to be sure another system would never fail him again.

While I was surprised to realize this drive comes from a place of deep hurt, I am thrilled that it has resulted in such a positive, wide-spread change.

Congratulations to us all!