The first time I walked into Developmental Disability Awareness Day (DDDAY) as a parent and new professional was at the beginning of this century, maybe in 2001. I didn’t know what to expect and was overcome by all the latest discoveries. On August 1, 2023, I returned to the 35th Annual DDDAY as their keynote speaker. Join me through this heartfelt journey from curious parent and budding professional to retired expert and author in 2003. The day was extraordinary, but four key moments resonated with me.
DDDAY is an event where families, self-advocates, professionals, artists, presenters, and performers (ok, you get the picture, a whole lot of people) gather to celebrate, educate, advocate, network, and learn. I have heard that our local gathering held at the Niagara Falls Convention Center is the largest event of this kind in the nation.
Our daughter Jessica, who needs assistance with all daily life skills, was still living at home in the early aughts of 2000, when I first visited DDDAY. She moved into a group home in 2007. Jess was born in 1982, and by 2001, inspired by my desire to learn so I could advocate for Jess, I received my master’s in special education and launched my career in the field.
Key Moment 1
My Keynote address started with Jessica and me at the front of the room. How many people were in attendance? More than 1000 people signed up for the day. Let’s just say that looking at the room and seeing all those faces was a huge thrill.
Standing and talking in front of a group does not make me nervous. For me, it is anticipatory anxiety. All the work leading to the actual event. Creating the two presentations. Writing, rewriting, returning to the original, and then rewriting the PowerPoint and speaking points consumed my days. But, I felt transformed once I was standing in front of the group, which included family and friends.
And our daughter Jessica has the same flair. My first key moment was when I introduced Jess. She immediately screamed and applauded herself, which got the audience to chime in with her enthusiasm. Seeing Jess enjoying the spotlight as we shared her story was a delight.
Key Moment 2
I was the director of the Western New York Early Childhood Direction Center. Our primary role was to connect families of children with disabilities, from birth to five, to local resources. Providing support, education, information on navigating the complicated special education systems, and networking were some of our foundational roles. Once I retired, I didn’t have the same opportunity to connect with families as I did when actively working.
A Mom approached me after the keynote presentation and told me that she recently discovered that her three-year-old was diagnosed with Autism. She was new to this unique parenting experience and didn’t know where to turn.
I remember those days when the diagnosis was new, and there was so much to learn, so much to digest, and so much about your future to recalculate. It’s daunting.
One of the highlights of my working days was our connection with experts working with families of children and adults with Autism. I took this mom’s number and told her I would connect her to a group that would change her world. Maybe that’s not the words I used, but that’s how I felt.
Later that day, one of the women who I wanted this mom to connect with came up to me at the book signing. It was terrific seeing each other after all these years. We caught up on each other’s families and lives, and then I shared the information about the mom I just met. I exchanged phone numbers; Mom gave permission to share her contact information and hoped a connection would occur.
I received a text from my friend later that week, telling me she spoke to the new mom and connected her to their group and support. It felt like I was doing the part I loved so much about my former career, connecting families with support in our community.
Key Moment 3
This happened back in 2001. As I mentioned, I was new to DDDAY and all the event offered. I walked into the vendor room, a myriad of vendors and displays. It felt like Toys R Us (remember that store…) for parents of children who need adaptive equipment and support.
Walking up and down the rows, I found a vendor selling Lucite Guard Rails for beds. I stopped in my tracks. Modifying the old bed rail with bars could be a game changer for Jessica. She was continuously getting her feet stuck in the bars and trying to get her head through the metal slots. WOW! Lucite bed rails, what a concept!
We were able to purchase the bedrails; oh, I wish I had a photo. I probably do. It’s packed away among the 20k photos in boxes somewhere. Anyway, the rails changed everything for us; as a bonus, they looked pretty!
Developmental Disability Awareness
The Western New York Community is unique. Friendships and support are abundant. People go the extra mile for others. I have been the recipient and the giver of assistance. The community, my community, has supported our family through hard times and glorious times. DDDAY is one example of people getting together to teach, help and share with others. I was honored to be selected as the Keynote presenter, which was my fourth Key Moment!
For More heartwarming, hopeful and inspiring stories about Raising a Child with a Rare Chromosome Deletion check out Raising Jess A Story of Hope!