I have been supporting kids with disabilities first, as a special education teacher and then as a special education administrator for 23 years. When we found out about Atlas bit of extra I realized that I would have a new role in a world I thought I knew so well. Being on the other side of the table has been great for me professionally but hard on me personally. I have a public Instagram for Atlas because I love sharing his diagnosis’s positive side and reaching out to parents coping with a new diagnosis. I have had parents reach out from all over, including Columbia.
We never thought we would be grateful for Atlas being a 32-week premie but looking back we are. He began therapy at 4 months and when we noticed his slight head drops our pediatrician took us seriously due to his premie stays. He was diagnosed with Infantile Spasms at 10 months old, which led to genetic testing and the discovery of his Dup15.
It is a full, active life with days that can be harder than others. That is just having kids in general, right? Atlas is blessed with in-school ABA and a pre-K program with typical peers. We also do in-home ABA and outside therapies. We are learning to ask for what we need from friends and family and educate them on how he can participate and be successful in a different way. Accepting help, keeping busy and switch hit parenting is what keeps us sane and happy. Our life is beautiful because of Atlas.
What is your hope for the future of your loved one? For the Dup15q community?: I hope he can live as independent a life as is appropriate for his developmental level. I want him to be set up when we pass. We are older parents and it is a constant worry, as is SUDEP. We celebrate each inch stone and hope they will continue to Halle. I hope Our community continues to be active in research and building support networks for families. I also hope we can reformulate the message given to parents at diagnosis. While the truth is important at that time, what is even more important is hope.
What advice do you have for newly diagnosed dup15q families?: Take a breath, let you and your family process the news. Never put a gate in front of child and know that every duper is different. When you are ready, get organized and active in setting up the support you and your family will need.
