By Miriam Bernard

Jessica Lynn admittedly hates flying, but in 2014, less than six months after she and her husband discovered their five-year-old son Spencer had a DCC and found the NODCC’s depth of resources via internet search, she knew that year’s NODCC conference was something she and her son needed. She pushed aside all the fears and difficulties to follow the gravitational pull she described was leading her toward attending. Jessica recounted, “I told my husband, ‘I think we need to go. I’m kind of alone here and need more ideas and resources… I’d like to connect, learn more, and get Spencer involved. That seemed like a really important piece for him to meet others who had similar diagnoses.”

Upon being there, the experience was so impactful, Jessica sought out NODCC founder Barb Fonseca to thank her personally. Barb wrapped her arms around Jessica and said, “We’re so glad you’re here.” Barb pointed Spencer toward the kids camp and Jessica recalls that he had the time of his life. “The counselors there were so welcoming and so understanding of Spencer,” she stated. While he was having fun, Jessica attended her first conference classes, and for the first time thought, “I’m not alone on this island anymore. I sat up and thought, ‘Wow. This is a warm hug I didn’t know I needed.’ The feeling of acceptance was so needed for me as a mom.”

After that first conference experience, Jessica knew it wasn’t just significant for she and Spencer, but for her entire family. She states, “After I came home, I felt like it was super important to get my whole family involved. I have four kids, and most of us have attended every NODCC conference since. We’ll be there in Chicago this year, and this is an opportunity to make sure our kids are informed. We want them to understand they’re not living in a silo themselves having a sibling with special needs. They’ve walked away going, ‘They get my brother; and they get me.’”

Recalling poignant conference moments, Jessica shared, “My kids adore the Saturday night dance. It’s not awkward, it’s not weird, it just celebrates every human there and where they are in their lives. It’s a time of learning, advocating, and just ‘being’. Conference is interesting because you walk in as strangers, but it’s about how quickly you come out as close friends, and not needing to jump through all the ‘get to know you’ hoops. You pick up where you left off if you’re old friends, or if you’re new, there’s no ‘Let me explain to you my life.’ We already get it. Welcome. We’re happy you’re here. Where can we plug you in? Where do you need to learn? Where do you want to grow?”

Having now attended many of the conference courses and information sessions multiple times, Jessica stated that she attends for the connection of being there, to help, and really to make sure her kids continue to keep their connections. Now that her children are older,  they text and call their conference friends and have literally asked their mother to “find out if Miss Barb can make conference a few days longer”, so Jessica is pretty sure the friendships and feelings of belonging are here to stay.

When asked what she might say to someone on the fence about attending the conference, Jessica states, “I would say, COME. You don’t know until you’re there. Life is expensive and we’re all dealing with co-payments, and extra things our DCC kids need, but this is time and money well-spent. Whether it’s just to fill your soul and your cup as ‘being seen’, or if it’s to gain information and knowledge, it hits a lot of points. You might not even know what those points are until you’re there. You have far more to gain than you have to lose.” She also shared, “I strongly encourage you to bring your children and give them the opportunity to just ‘be’. There aren’t a lot of spaces for them to do that, or places that aren’t judgmental. My son Spencer who has the DCC has walked away every single year saying, ‘Thank you, Mom. For seeing that this is important, and for seeing that this is something I need.’ It’s genuine and from his soul. That makes the money, the time, and the effort worth it all in my opinion.”

 You’ll see Jessica and her family in Chicago at this year’s NODCC conference, dancing, learning, connecting, and enjoying one of the few places they know DCC families can just “be”. To sign up to be one of this year’s NODCC Conference attendees, click here!