For a lot of high schoolers, going to college or living in an apartment of their own is a huge step to life out of their childhood home. Having a brother or sister with a disability can make that feeling even more daunting. The uncertainty of what you and your sibling’s lives ahead hold looms in your backyard. Additionally, many sibs feel as if they are being selfish taking a step back from their brother or sister. Since we have always been a primary caretaker, it feels odd to only look out for yourself.
When I first left for school, I couldn’t tell whether or not Aaron even missed me. Since Aaron cannot communicate with words, there aren’t very many cues showing whether or not he noticed I had left.
Spending weekends at home were always a great time. I enjoyed the extra time I got to spend with my buddy. However, things had changed. Aaron was into different TV shows and movies since I had left. He preferred to play the Wii over the computer. I was feeling overwhelmed that I had missed even the small parts of his life.
Besides feeling out of the loop, there’s always the big question of who will take care of Aaron when my parents are no longer able. I realized that when looking at new communities for me to live in, I was looking at things such as whether or not there were programs for people with disabilities, how good the sidewalks were, and if homes and neighborhoods were easily accessible.
Slowly I began to realize that I was trying to create my own life around Aaron, rather than Aaron’s life being around mine. In order to feel my own sense of security, I need to create my own stable new life, and find great new ways to incorporate Aaron when I am all settled in. This option creates for a much more anchored life in the future, which will put you and your sib at ease.
As for time together, there is always plenty to come. It’s okay to spend time apart and explore who you are outside of your role as a sib. It will always be a part of you. You and your sib will still have a great relationship for years to come, even if you are not around as much. They still hold a special part of your heart.
Wisconsibs is proud to help our friends at The Organization for Autism Research distribute their activity book “Autism, My Sibling, and Me” This book is a fantastic resource for younger sibs. I had my youngest sister Claire fill out this book, and I did as well.
The book is filled with great information about autism, but it works well for children who have a brother or sister with any disability. It addresses questions such as, “Can you catch autism like a cold or the flu?” “Is autism the same in everyone?” “Do people all over the world have autism?”
Many emotions that come with being a sib are well addressed at a level that is easy to understand. Fairness, anger, and embarrassment are some of the sections included. These emotions can be especially tough to sort through when you are unsure why your sibling acts the way he or she does. It’s okay to become frustrated with your sibling, but finding ways to work through this is key. In my book, I wrote that when I am frustrated with Aaron, I should take a step back and return when I can work with him patiently.
Between volunteering at Sib Days of Summer and living with Aaron, many sibs can feel like they’re ignored, under appreciated, and left out. This theme is very common in younger sibs; I even feel like that sometimes as an adult sib. We do understand that our brothers and sisters may need extra assistance, but it can be hard at times. Page 6 of the workbook addresses this, and has a space where sibs can think of acitvities to do with their parents. My sister wrote “Play with their full attention, go to lunch, and do special things”
Finally, the book encourages children to think about what it’s like to be a sib, ways to try and understand your sib, and how to explain their brother or sister to a friend. I wrote, “Aaron moves his arms and legs a lot when he’s excited. This is because he has Angelman’s Syndrome”
I had a great experience exploring this book both on my own and with my sister. You can view more details on the activity book by clicking here. If you or someone you know would like to find out how to get a free copy, email us at [email protected]
We’re still deep in the cold of winter (actually having a “snow day” today), but looking forward to the warm, fun days of summer! That means it is time to enroll in this summer’s Sibling Summer Programs. Enclosed is a brochure with the details. Take a look, dream about how much fun you’ll have this summer in the warm sunshine, and sign up early. These programs are very popular and fill fast!
- May 1 Deadline for application for Teen Sib Leadership Award and Teen Sib Leadership Camp. See brochure for details.
- May 15 Deadline to enroll for TEEN SIB LEADERSHIP DAY. All HUMAN RACE donations due.
- June 1 Deadline for enrollment for SIB CAMP in Door County.
- June 23 TEEN SIB LEADERSHIP DAY – Plamann Park
- July 1 Deadline to enroll for SibDays of Summer
- July 18-22 SIBDAYS OF SUMMER – Plamann Park
- July 28-31 TEEN SIB LEADER CAMP – Devil’s Lake
- August 11-14 SIB CAMP for ages 12-16 Door County
- August 18-21 SIB CAMP for ages 9-11 – Door County
For those who may have gotten a printed brochure with an error in the Sib Camp dates, the above dates are correct and the brochure has been corrected.
You can download this for corrections – WisconSibs Summer 2016 brochure-corrected dates