By: Marianne Marts
Younger sibling – what is it is like being a younger sibling? Well let me set this up for you. Joey is the oldest and he has DS, then there are 4 more brothers then me. The one and only girl! Now even though I am the youngest I have many older child tendencies due to Joey. Being the only girl I naturally have the caregiver role, especially since I am the one of the 5 other sibs who has lived with Joey being at home with me my entire life. Back east he lived in a private catholic boarding school and came home on weekends. You may be thinking…what was life like? Well it wasn’t all bad, in fact it was fairly good considering. As I have been recently reflecting on my life and how Joey has added to and changed my behaviors as an adult are both good and bad depending on how you look at them.
1st….I realized that as an adult I have a harder time making concrete decisions when deciding where to go out to eat or relax etc. As a kid it was always easier to just go where it was going to be easier for Joey so he wouldn’t have a behavior. As an adult the negative side to this is that is it really important for me to have my own interests and places that I enjoy being rather than assimilating my hubby’s or Joeys. So I am trying now but it’s hard…
2nd….As a child I rarely ever had friends over. Joey has/had lots of violent behaviors like hitting walls and breaking TVs. So it was always easier to go to someone else’s house. Only recently did I realize that my friends never really knew about Joey. We celebrated Joey’s birthday this year and saw an old neighbor and school friend who came over to our table and we talked about old times. I asked him if he remembered Joey and he said NO. That just made my heart sink. I began to question: Was I ashamed, uneducated or just plain embarrassed or all the above? I think it was all the above. I didn’t know much about DS and didn’t know how to explain it to my friends and back then (Joey is 54) talking to your kids about the disability wasn’t really thought of. Parents were just trying to survive with the limited resources as most were in the institutions and if you chose not to go that route you had to fight your way through things. So I don’t blame my parents as they were uneducated as I was. Now I can help change that.
3rd….Are we concerned for the future? YES YES YES, just like you the parents if not more so! You might be thinking in the back of your head will my kids be willing to take over care? Should I ask or say something? Whether you realize it or not, sibs carry the same stressors and concerns as parents. We think what is going to happen when they are gone? Will there be financial resources for me to help my sib? What do I do about services? And on and on… Please don’t be afraid to bring the topic up…believe me we all have thought about it and ask if they want to be involved in the process. The best thing my mom ever did was allow me to begin taking over slowly so I could get to know the required processes for Joey on an annual basis. This is truly a blessing and very rare! My goal is to change that! Because it is not if something happens but when! Are you ready?
So as younger sib I am fully involved into Joey’s life in all aspects. First I am his sister, then his guardian and advocate, caregiver, friend and #1 supporter. I have a proactive personality which may seem to rile people at times but I am ok with that. Change does that and that is good! My goal is to educate families on the sibling perspective and the need to be ready for the future. Join Joey and I on Facebook at JoeysUps and visit our website to see our book called Will YOU Be my Friend? A book teaching a great anti-bully message that we are more alike than different! www.joeysupswithdowns.com. To contact me to speak, email me at email@example.com and subject it speaking. Thanks for hearing “our” side. Remember we are here for the long haul…are you ready?