Life is unpredictable and a world is naturally shaken up a bit when a baby is born. We had expected to experience some measure of unpredictability with our first child. However, when our daughter, Zoe, was born in the Fall of 2003 we knew our lives were going to change in a way we had never prepared. In some ways prenatal screening had prepared us for the physical differences in our child born with a significant cleft lip and palate. We did our research and knew the surgeries she would need would be extensive along with the feeding obstacles and we were ready for that challenge. However, we were unprepared for some of the additional diagnoses that came along the way. In the hospital she was diagnosed with a coloboma in her right eye which would lead to patching for years, and she was given “hard of hearing diagnoses” when she failed her newborn screening exam 3 times. Around the age of 18 months it was apparent that Zoe was experiencing some further delays and we went for more evaluations. Between the ages of 2-5 she was further diagnosed with fine/gross developmental delays, growth hormone restriction, cognitive delays, and autism. In 2012 we topped off her diagnoses with ADD! Those are a lot of diagnoses for one little kid…and family!
Figuring out which condition to “tackle” first has always been a struggle because they all interconnect so much! Thankfully, due to the multiple diagnoses, we had multiple support systems in place through 9 East (formally Vermont Center of Deaf and HOH), children with Special Health Needs Cleft Palate clinic, and the Vermont Family Network’s CIS-EI program. We struggled to balance all the different facets of life – between changing jobs, growing family (adding 2 more kiddos into the fold), scheduling her intense programming, multiple doctor appointments, and surgeries into our weeks, learning sign language, and trying to give Zoe the support she needed. At times it was hard to stay SANE! (Although to be honest, ALL parents lose their minds to some degree, so that’s not totally to blame on the special kiddo….)
During the elementary school years our family was feeling the need to figure out how to function in a school with an IEP and juggle the huge team that surrounded our child. We wanted to move forward as a team with the school and found ourselves struggling to communicate effectively. We reached out to VFN and found yet ANOTHER invaluable resource to help educate us on the education system. We received some helpful guidance, insight, and legal rights awareness that was game changing for our family. We were given another language to build on the divides we felt at school and help us connect in a team-oriented fashion.
Our family has been so enriched by the connections we have made at VFN. I value their mission and their desire to help families who are struggling with the “hard sides of special”. Through their pursuit of further educating, I have been able to share our story. Speaking to young students pursuing their dream to become doctors, nurses, speech and language pathologists, audiologists, special educators, teachers, and many more has given me the opportunity to share what I have learned on our journey. It’s one of my greatest privileges to share a bit of our story to help educate others.
Vermont Family Network Annual Report 2018