Andrew’s Story (Well, the first 17 years of it!)
Written by Janeen Rubino Brumm
Andrew was born in February 1997. Our first year was bliss. He never cried, slept through the night very early, and was never difficult. After that first year, life took a turn. Andrew had febrile seizures, starting at 12 months old and ending at 6 years old. He wasn’t talking or walking at 2 years old, so he started speech therapy and physical therapy. Whenever a milestone wasn’t reached, Andrew always received early intervention. He was a happy, easy baby and toddler, and we were (and still are) so in love with him.
Fast-forward through preschool in our district’s “Communicatively Handicapped” class (which got him talking up a storm!), elementary school (a mixture of special ed & general ed), social skills classes, more speech therapy, adapted P.E., and many IEP meetings. Whew. For many years he was never diagnosed with autism, although we asked. He never had “enough” of the behaviors needed for a diagnosis until 4th grade, when he was finally diagnosed with HFA (high functioning autism). But still, I knew in my gut we didn’t have the whole picture (especially because the HFA diagnosis wasn’t an easy one to make). In 2010, at 13 years old, his new behavioral pediatrician wanted to get chromosome testing. So we did. And there was our final piece to the puzzle. Andrew has a very rare, random chromosome variation called 48xxyy. He has two extra chromosomes – and extra x and an extra y. That is his primary diagnosis (autistic behaviors are under the xxyy umbrella), and that is why our Andrew is the special, unique boy that he is. It was a 13-year journey getting all the answers to why Andrew is who he is, but we have them, and we are so grateful for that.
We have always raised Andrew and his brother, Robbie the same way as much as possible. Throughout his childhood, we were involved in playgroups, sports teams, family social functions/vacations, boy scouts and clubs at school. We still do most of those things today, only Andrew’s sports are now through Special Olympics, and he has a friend over once in a while to hang out (those are special days!). And yes, we are a very social family and get together with family friends often – our “village.”
Andrew is now 17 and a junior in high school. He is doing well, but still struggles making and keeping friends. I think the main reason for this is that Andrew sees himself as “typical” and his peers do not. Andrew also struggles with impulse control and making good choices throughout his day. But he also makes us laugh every day and think about the world in a different way. It’s a special thing.
At this point, we do not see Andrew being able to live on his own as an adult without support. And we don’t want his brother Robbie to have to be responsible for Andrew some day when we are gone. Andrew struggles making good choices and he needs constant reminders to finish daily tasks (including taking care of himself). Because he wants friends so badly, he could very easily get himself into a situation where he is taken advantage of. It is for these reasons we hope Sunflower Hill becomes a reality. The vision of Sunflower Hill is the vision we have for our son. A community like senior living, where there are social opportunities, work opportunities, and friends like him that feel like family. “Community” is the key word. We want Andrew to be living in a community where he feels loved, wanted and appreciated. With autism now being 1 in 68, there are thousands of developmentally delayed children growing into adulthood and their parents are facing the same dilemma as us: Where will he live? Who will take care of him when we are gone? This is an overwhelming question to face as parents, and one that we hope will be answered for us and for many other parents in the Tri-Valley, with Sunflower Hill.
Andrew has most definitely changed our lives for the better. Our entire family and our friends are all better people because of the important lessons Andrew has taught us. The way I see it, EVERYONE has challenges in their life. Whether it be parenting/caring for a special needs child/adult, health problems, a difficult marriage, death, a challenging job, other kinds of issues with their children, caring for aging parents, etc. But my challenge? Mine comes with rewards, almost every day. We celebrate every little thing – turning a D into a C, saying “hi” to a new friend, following the rules at school, “getting” sarcasm, reading body language, compromising, and I could go on. We celebrate all the little things that are intuitive and taken for granted by most, but have to be learned over and over again by Andrew. So, my challenge, though difficult, is rewarded on a daily basis. All should be so lucky. ♥