Hi Kelly & Adam, we’d love for you to start by introducing yourself.
Our son Reid was diagnosed with Dup15q Syndrome in July 2021. He was 2.5 years old and we finally had an answer after about a year of knowing that something wasn’t quite right. The genetic test results came when our daughter Lena was about a month old, so it was a topsy-turvy time in our life. The diagnosis includes intellectual disability, autism, global developmental delay, and epilepsy (thankfully, Reid is seizure-free for now). Finally, we had an explanation for all the things we were seeing in Reid.
We were thankful to have answers and be able to help our son move forward. It also helped in our expectations of his life and ours. It is difficult to process a special needs diagnosis. You never think it is going to happen to you. When you picture your life with kids and a family, you never imagine it including a child of profound needs.
Reid has opened our eyes to a world that we never knew about. He has given us the gift of perspective. And most importantly he has given us love, snuggles, and the realization that a person’s worth is far beyond what they can do or accomplish in their life. Few are given such a gift. And while there are still difficult moments and grief for how we thought we’d live, we are learning to truly cherish the life we have. When we first got the diagnosis, Kelly’s Dad said that sometimes in life we are dealt hands we don’t expect. He’s right. We certainly didn’t expect this. But now our motivation is to play the hand to the best of our ability.
We have felt very lucky to be in Nashville while this chapter of our life unfolds. Reid has received incredible care at Vanderbilt Medical Center, as well as his whole team of therapies. This part of TN has a robust special needs community, but you may not know it unless you are looking! We are lucky to have every therapy under the sun and some even more special things like Rock the Spectrum play gym, Move Inclusive Dance Studio, and the Nashville Dolphins (special needs swim team).
Reid continues to be a sweet, snuggly little boy who adores water, his family, and cars. He has made incredible progress in the areas he struggles with (communication, coordination/strength, and behavior). We can’t wait to watch him grow into the boy he is meant to be. And we’re so incredibly lucky to have sweet Reid in our lives.
I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
It hasn’t all been smooth. Struggles have included a delay in diagnosis – we originally received an ASD diagnosis and were recommended for genetic testing, but we put it off for a while. We never dreamed they would find something. Other struggles have included determining the best course of action for therapies – selecting the right providers, amount, frequency, and duration. We’ve wanted to find the balance between getting therapy that will help Reid but also allowing him downtime to be a kid and have some freedom.
There are many things now which are profoundly different for our family and will be forever. This is difficult to come to terms with. However we’ve utilized counseling, leaned on family and friends, and worked hard to prioritize each other and self-care. There is a poem called “Welcome to Holland” written by the mom of a child with Down Syndrome. It is a great summary of the experience of learning about your new life and path.
Other struggles with Reid specifically include the deficits because of his syndrome. He is functionally non-verbal, in that a stranger off the street would not be able to communicate easily with him. It is really hard to handle the toddler years with a little one who can’t fully communicate. But in the last year, he has started “talking”. We call it Reid-speak and it is magical. “Muh” means no, “Aw Duh” means all done, and the list goes on. Reid is incredibly musical and has perfect pitch so a lot of his communication is pitch-matching the tone of how we normally say a word or phrase.
We also want to ensure that our daughter Lena feels loved, valued, and never less than because she doesn’t have therapies or a full schedule to manage. Reid is sometimes rough with Lena and we hope that we can continue to work on their relationship so it includes more kissing and snuggling and less rough-housing. But we suppose that is a very typical desire for typical parents. So we like to remind ourselves that sometimes our life isn’t all that different than most families!
Risk-taking is a topic that people have widely differing views on – we’d love to hear your thoughts.
Our perspective on risk has changed through this experience. When you become the one in a million, it dawns on you that anything can happen to you! We used to be riskier, and now we tread more carefully. We’re working on finding that balance of still taking risks, but exercising the right amount of caution.