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
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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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
A few years ago, Sebastian told us he wanted to run in college and study education. Honestly, we hadn’t planned on college. We thought Sebastian would attend the 18-21 program at his high school. He did for one year, but then wanted to move on. We thought it would be a big jump to go directly into a matriculated college program, so we look for alternatives that would satisfy his academic and athletic goals. Using the Think College website, we looked at inclusive college programs in Division III schools. However, most schools wouldn’t consider having Sebastian on an NCAA team because the inclusive programs are non-degree programs and the NCAA requires student athletes to work towards a degree.
While I understood and respected the NCAA’s rules, I also knew they create waivers for students for a variety of reasons. I felt it was time to acknowledge that over 300 colleges in the US have students who live on campus, audit a full course load, and are welcomed to participate in every club and organization offered to all students….except for NCAA sports. That was an inequity I wasn’t willing to accept. The only way to eradicate an inequity is to find someone who is willing to listen and who is in the position to affect a positive change. Fortunately, we were able to partner with Gwynedd Mercy University in order to secure a four year NCAA waiver for Sebastian and all future Integrated Studies Students.
Today, Sebastian and I are featured in the The Philadelphia Inquirer. Many thanks to Gwynedd Mercy University and the NCAA for working with us, and reporter Susan Snyder for helping us get the word out. Now any DIII student in an inclusive college program will be eligible to compete as stipulated by the NCAA in their “Previously Approved Waivers Checklist.”
When I asked Sebastian how he felt about his role in making it easier for other students to compete for their schools he said, “I’m glad that I’m helping to change the community.”
Indeed. In my mind, there’s no better person to do it.
Sebastian,
Somehow 20 years has slipped through my grasp. Why is it I don’t recall anyone telling me that parenthood is a series of letting go?
The other day, I found a pair of your first walking shoes. I can remember holding your hands in an effort to help you balance. A grasp became a fingertip hold and then I let go when I thought you were ready and eager to step away from our connection.
In no time, you were running.
This has been a special year. Your dream of attending and running in college has come true. I know it wasn’t easy to leave home. It was hard for me too, so I welcomed those nightly phone calls. Now, I welcome the absence of them. I never doubted that you would find your balance and let me go.
This week, someone asked me what my vision was for you when you’re finished with college. First I said, “It’s an unwritten rule that parents shouldn’t think too far into the future.” Then I tried to explain that I don’t have a vision for your future. Even if I did, it would be far more inconsequential than the vision you have for yourself. Your future has absolutely nothing to do with my desires. Your future is not about me. My job as a parent has been to follow your lead, encourage your interests, and support you in whatever way I possibly can. That you have your own vision is a success story above anything I could have originally conjured up 18 plus years ago when you were first diagnosed with an autism spectrum disorder.
While it is true that I have spent your entire lifetime advocating for you in an effort to pry open the doors that were so easily closed, you have taken on every opportunity with hard work, joy and gratitude.
Keep building your visions. You’re doing a fantastic job and I am so incredibly proud of you.
I am so lucky to have a son who still hugs me tight in public and says I love you no matter who’s in earshot. I will always treasure that connection and because you have such great emotional intelligence, I know you will as well. It is a connection that space and time and even the act of letting go cannot break.
I love you and wish you the happiest of birthdays.
Mom
Special-Education Mom 