Fall and Recovery is out today! You can find recent print and podcast interviews on the Media/Events page. I created a countdown on Instagram and Facebook with advocacy tips. I thought I’d take a moment to share those with you!
Order Fall and Recovery online or from your favorite local book seller!
I’m signing books tonight at The BookMark Shoppe in Brooklyn, NY at 7pm.
Check out my post on Parents Together talking about advocating for children with disabilities in school settings and with medical professionals!
Last month, my publicist sent me an article request from Kind Over Matter. “Their main focus is kindness,” she said. I immediately thought about a difficult moment I had when the boys were young and the kindness of a complete stranger. It was something I’d never written about before. Check out Remembering Kindness and learn about this unforgettable experience.
For recent interviews and upcoming book events, check out my Media/Events page.
When we first decided to send Sebastian to a non-degree integrated college program, some of our friends asked, “Why spend all that money on college tuition when he won’t get a degree?” Believe me, we asked ourselves the same question. We considered using that money for other things, like buying Sebastian an apartment, but ultimately, we wanted to give our son the ability to work on his own goals.
Sebastian wanted to:
As parents, John and I had our own goals for Sebastian:
We felt that an integrated college program was the best option for getting Sebastian closer to realizing these collective goals.
The truth is we didn’t know what to expect, but we were hoping for the best. Sure, we were confident that Sebastian would get to class on time, would work hard, enjoy running, and would be respectful of teachers, advisors, students, and campus staff. There were some benefits we never could have predicted. Continue reading
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
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.
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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.
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
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.
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Special-Education Mom 