This all started with one question to a friend, “Do you know of a place or an activity I can volunteer for?” The answer yes started me on our additional needs journey. I started to volunteer for Art Fest Naples which benefits individuals with additional needs with monies and bring more awareness to the community about additional needs. As I was volunteering I got to know the families and two of the families made a lasting impression on me. The Kandels and the Stanelys both have children with autism and have shown me how important it is to share the information we learn that helps our children reach their full potential with other additional needs families. With not having anyone in my immediate family with additional needs I was not only volunteering for the art fest but trying to figure out ways their children and others with additional needs would be able to get meaningful employment. Both of their children were in high school at the time and concerns of “What will our kids do after high school?” filled their minds. A project called the Garden of Eden was discussed. It was to be a farm that was going to be developed and employ individuals with additional needs. For many reasons it did not fully come together.
Year after year with the art fest, I got more and more involved with putting the show together. For the last ten years I have been the logistics director of the show. Just a year into becoming the logistics director our son Jack was born. My wife Cynthia and I had been trying for a few years prior to have a child. We had just told our parents that we no longer were going to put ourselves on the roller coaster of “are we expecting” each month. Once we relieved ourselves of the pressure, Cynthia became pregnant with our son Jack. We were over the moon! The pregnancy went very well and we thought all was set for a natural childbirth.
On the day that Cynthia went into labor that all changed. Jack’s heart rate started to drop with each contraction Cynthia experienced and our doctor told us they were going to need to do a C-section. This was the last thing we wanted. Cynthia worked with alternative medicine practitioners throughout the pregnancy. She called up a practitioner-friend who rushed to the hospital to assist in making a natural delivery possible. It worked, which helped with Jack’s heart rate and Cynthia had the natural birth she desired. From the moment Cynthia saw Jack she thought he was with Down syndrome. She told this to me later and said she saw it in his eyes. The funny thing is the afternoon after Jack was born I went to our house to walk our dog Bear and when I looked into the rearview mirror and saw my eyes. All I could think was he has my eyes! I had no clue that Jack was with Down syndrome.
It wasn’t until our first pediatric visit that our doctor made us aware of the possibility of Jack possibly having a heart issue and being with Down syndrome. A week and a day after delivery, we found out that Jack may have an issue with his heart since is heart rhythm had changed. We had to meet with the pediatric cardiologist immediately. It was through that cardiologist visit that it was confirmed, Jack was with Down syndrome and that he was going to need heart surgery ASAP.
In my desperation, I went into learning mode. That entailed hours upon hours on the computer searching about Down syndrome and the resources that our area had or didn’t have. I was doing this in the middle of the night, neglecting my own sleep and checking on our son every half an hour to make sure he was breathing ok. What frustrated me most was that doing a search for information was very difficult and time consuming. People named their websites all different things which have nothing to do the keywords of your web search. I began bookmarking sites that I found helpful but very hard to find and then thought back to the Kandel and Stanley families and how they always shared what they had learned. I thought I would do the same and build a website that had all the resources for individuals with Down syndrome in the Collier County area. I thought what would be the best way for people to find it so I called it DownsyndromeNaples.com. It was that simple. So when people would search for information about Down syndrome in Naples guess what would come up? Yes, DownsydromeNaples.com. No longer would individuals have to spend hours and even days finding helpful sites because now there were located on one site.
From day one I wanted to have a site that covered all resources for additional needs but at the time of building DownsyndromeNaples.com I was focused on our son and making sure his surgery went well. It took a few years to get grounded and be able to start on Additional Needs, Inc. But here we are. Building a company that has all the resources and tools to assist individuals with additional needs in reaching their full potential. All run by individuals with additional needs in every state. Jack is doing well and I hope if he wants, one day will run Additional Needs, Inc.