My son, "Joey", was born on July 2, 2010. We were so excited to have a baby boy join our family. Minutes after returning to the recovery room, the doctor entered the room and said "there is a possibility, your baby may have Down syndrome." Thus began a very confusing week in the hospital as we awaited the genetic tests and contemplated what this all meant. Unfortunately, the doctors, specialists and nurses were not well equipped to tell me much about Down syndrome and the picture they painted of Joey's potential was quite bleak, despite him being a healthy little guy.
Thankfully, I was soon able to connect with groups like the Down Syndrome Association of Atlanta, Babies Can't Wait and the National Down Syndrome Congress where I was able to get accurate information about what it means to have Down syndrome and meet families who showed me a future full of all the joys and blessings we had always hoped for our son.
Joey is only 14 months old and he is doing great! He is an adorable, smiling baby who just loves our attention. He gets a lot of that from his two sisters Annie, age 9 and Carlie, age 3. Joey feeds himself, is crawling everywhere and loves to sing "itsy bitsy spider." We receive physical therapy through Babies Can't Wait and I hope we can add speech therapy soon. We are trying to apply for the Deeming Waiver but the process is very time intensive and confusing. We are part of a local playgroup of other children with Down syndrome and have enjoyed this new community of friends and fellow advocates.
I am concerned about the transition to the school system. I hear I will have to fight to see that Joey gets all the resources and services he is entitled to. I have heard that the tendency will be to put him in a special ed class, even when studies have shown that children with Down syndrome do much better in inclusion classrooms. I have heard Joey may have to travel an hour on a bus to and from school just to go to kindergarten because he'll have to attend a school that focuses on Down syndrome, rather than his home school. I am also concerned that cuts to programs like Babies Can't Wait and Medicaid will keep Joey from getting the therapies he needs now (physical therapy, speech therapy, occupational therapy and others) to help him become an independent adult in the future.
My immediate hopes for Joey are for him to continue his physical development learning to walk and talk over the next year. I most hope that Joey will be verbal. Speech therapy right now will help us achieve that goal. Cuts in Babies Can't Wait funding could prevent him from getting this therapy. Soon he will need participation in a pre-k program close to our home with a fully qualified early childhood special education teacher and typical classmates, participation in a "regular" kindergarten class with support from a special education resource teacher and regular speech therapy, and a community that embraces him as a valuable member.
My life hopes and dreams for Joey are like that of my other children - that he will do well in school, have friends and find hobbies he enjoys, that he will participate in sports, have a girl friend and will go on to post secondary education. As he grows to an adult, I hope he will have a job he loves and be able to live independently enjoying a social life and community activities. I have every reason to believe he will achieve anything he puts his mind to! I can already see his determination. We give him something new to work on and he achieves it in no time. Of course, it will be important that he have access to community supports, Medicaid, transportation, independent housing options and job coaching. Joey is a joy and delight in our lives! That extra chromosome just means he is "extra" special! What we want you to know about people with Down syndrome is that they have the same hopes and dreams as any of us and deserve the best chance to pursue those dreams and reach their own unique and individual potential. Jennifer and Charles Sheran, Stone Mountain, Georgia)