April 10th is National Sibling’s Day, and all of us at WisconSibs are gearing up for our celebration on April 8th. This event at The Building for Kids: Children’s Museum will feature our theme “Siblings are my Peeps®” This contest is geared to bring siblings together for the ultimate Peeple’s Choice Award!
Think of a favorite memory with your siblings, and create a scene using marshmallow Peeps® to make it super duper awesome! Some of my favorite sibling memories are playing with the laundry chute in our old house, biking in our unfinished basement, and goofing around on vacations.
We had so many different ideas for our scene, but we ended up choosing to recreate our trip to the Jelly Belly factory in Illinois. I still have my hat that we are all wearing in the picture! This trip was amazing; you walk right into Jelly Belly heaven. Any and every possible flavor is there, including (but not limited to) birthday cake, orange cream soda, buttered popcorn (which is my favorite) and wacky flavors like toothpaste. Recreating this memory has been such a blast for my sisters and me. We have almost too many ideas to fit into our little scene. I am so excited to see how our display of such a fun memory turns out!
Take a look at the official rules and guidelines for how to enter on our website under the events/info tab. What will your entry look like? Join us at our celebration April 8th to be eligible for the crowning of the ultimate champion. May the best peeps win…
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 sibshops@wpstaging.simple.biz
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 1Deadline 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.
Starting January 11th, the Fox Cities Performing Arts Center (PAC) is offering an entire week of autism programming. There are many sessions running all week, with the Chicago Children’s Theater production of “Red Kite, Brown Box” as the center of the event. This production strives to spread autism awareness and inclusion through the arts. This event is interactive for those with autism and their caregivers, and has multiple showings on Thursday and Friday.
Wisconsibs will be present and hosting a session at the Appleton Public Library, on Thursday January 14th from 4:30-5:30. “What About Me? What Children Who Have Siblings with Autism Want (and Need) is being led by our very own Harriet Redman. Many people have a brother and sister who has a disability. Being on the lookout for your sib is very important to their brothers and sisters, and is an integral part of growing up and life beyond. Though this a joyful and rewarding experience, common issues arise. This could include feeling confused as to why their sib is different from other children their age, getting less attention than their sib does, and thinking that they are the only one who experiences these things.
Our workshop highlights these issues, and interactively works to showcase ways that we can be mindful of the brothers and sisters needs as well. Finding a balance between a child with autism and their siblings is key to a healthy and happy relationship for the entire family.
To learn more, you can find information on the link below.
This past week, I took Aaron with me to The Building for Kids: Children’s Museum. When taking Aaron to any destination, it tends to be a hit or miss. For example, there are many days Aaron loves to get on the bus to go to school. Other days, it takes two people and a bus aid to get him to leave the house.
Living with as a sib your whole life, it can be hard to stay optimistic about traveling anywhere from vacations to a restaurant or even your next door neighbor’s house. When you do take a trip of any distance, there is always a list of different approaches in your back pocket if anything bothers or upsets your sibling while away from home.
For this blog, I took a step back and paid attention to some common themes that occurred as we explored the museum. Though these ideas are not always foolproof for any sib, maybe you can find a new angle or better understand your role as a companion and a sib.
Sending the boats down the slide
-Assist, Don’t Execute
Don’t take over any activities entirely. We all know what our sibs need assistance with, but they are capable of a lot; sometimes even more than we think. I learned this when we were playing with a slide in the exhibit with different activities involving water. Aaron can walk independently, but it can take a while, especially when the floors are slippery. I’d assist him by passing him the toys for the slide, and he would send them back on their way. This made playing and learning togethermuch easier, but Aaron was still at the core of involvement.
-Pair the Old with the New
New places mean unfamiliar surroundings, which can be frightening or simply uninteresting to our brothers and sisters. Usually Aaron prefers to walk around and look at things, and then move on to a different activity. It is exceptionally tricky taking him to places where he needs to stop and interact with his environment. He’s set on simply doing what he always does at home, and that’s that.
This is where the idea of old paired with new comes in. Aaron has a whole army of Despicable Me Minions at home. Dave, Stuart, Bob, Kevin, and even a stuffed minion infected with the PX41 Serum (from the sequel movie, which turns minions purple!) These guys are a family within our family.
By bring Dave with us, I had an additional resource for Aaron to use as
he focuses on one activity. We stopped and made a house for Dave out of wooden blocks. Aaron really enjoyed it, and even decided Dave needed to wear a hat too!
-Tackle New Adventure as a Team
Be fully present with your sib! Watching from the background is no fun for either of you.Spending time together promotes strong relationships between the two of you. It’s a time when you and your sib can just smile and enjoy each other’s company. Aaron and I had such a great time exploring the museum together. I really enjoyed spending the afternoon with my brother, and I’m sure he liked it too!
Speaking of the Children’s Museum, Wisconsibs’ March 19th, 2016 Sibshop will be hosted there! Stay tuned for more details on that.
On behalf of Wisconsibs, have a great holiday and a wonderful new year!
My name is Anna Benz, and I will be working with Wisconsibs as an intern for the spring and summer. I have been involved with Wisconsibs starting at age six. The first Sibshop I attended was at the former Appleton Children’s Museum, and we decorated Christmas cookies. Since then, I have attended numerous SIBshop and Sib Days of Summer, along with being a counselor at Sib Days for the past four years.
Like many sibs, one of the things I seek to do is to provide advocacy and understanding of what it’s like to live with a disabled sibling, and how to properly treat and respect those with disabilities. Essentially, it boils down to accepting and acknowledging them as if they were anyone else you’d meet in your daily life.
My brother Aaron has always been a big part of my life, just like any other brother or sister. What makes my brother unique from others is his differing abilities. When Aaron was 2 years old, he was diagnosed with PDD-NOS (pervasive developmental disorder- not otherwise specified). This means that Aaron has many characteristics of autism, but is not categorized on the autism spectrum. Like autism, Aaron has difficulty with communicating, walking, and when schedules and routines are broken. In addition, Aaron is completely non-verbal, and needs to hold someone’s hand or use a walker to walk.
This has made many differences in my life too. Over time, our family has learned different visual cues and gestures to try and understand what Aaron needs. He also has a communication device to help him express his needs. The device (which we call his “talker”) then reads what he needs aloud. When people ask me if I wished my brother were “normal” I always say that some days are harder than others, but Aaron has always been my brother. His differing abilities bring many ups and downs, but I can’t imagine him any other way. Aaron’s personality, smile, and joy from the simple things in life remind me how much we are alike, and how much I love to proudly call him my brother.
One of the things I will be working on with Wisconsibs is updating the organization’s blog and Facebook page. If you would like to contribute your ideas, or if you have a vision of what this blog could become, feel free to comment below! Thank you for reading and supporting Wisconsibs.
Left to right: Amanda Betts, Chris Linn, Greg Waters, Jeff Amstutz, Rich Redman, Harriet Redman, Ed Ruffolo
WisconSibs Rebranding Saluted by PRSA
Recently, WisconSibs, Inc. received an Award of Merit from the Northeast Wisconsin Chapter of the Public Relations Society of America. It recognized our work of renaming and rebranding our organization from the Fox Valley Sibling Support Network to WisconSibs, which was introduced in November 2014.
One of the judges commented: “Very creative program . . . Its implementation was fantastic and I loved seeing how all of the pieces and parts fit together to create a strong program.”
This is a great opportunity to again say thanks to the key players in the project:
The Dialogue Partnershop (Rich Redman) – wrote creative brief and wrote/edited copy for brochures and website
A2Z Design (Jeff Amstutz, Michael Miller) – led renaming process and created new logo and display graphics
Angela Fulcer Design (Angela Fulcer) – designed introductory postcard and flagship brochure
Stellar Blue Technologies (Greg Waters) – designed and constructed new website
Red Shoes PR (Karen Schlieve Smith) – created video testimonials and initial news release
Eric Cates – T-shirt design
Chris Linn – former board chair, member of Marketing Committee, and strategic advisor
And thanks to all of you who have embraced the new name, and helped us spread the word about our organization to sisters and brother of people with disabilities across the state of Wisconsin!
Siblings and other family members: This is YOUR opportunity to make your voice heard! Check it out…
URGENT ALERT: Department of Health Services (DHS) to Hold First Public Hearing on New Long-term Care System(Family Care/IRIS) September 9 in Green Bay!
On Wednesday, September 9, the Department of Health Services will hold the first of 8 public hearings on the long-term care system redesign at the Brown County Public Library (5:00 pm – 8:00 pm, 515 Pine Street Green Bay, WI 54301). While we are encouraged by DHS’s decision to hold public hearings around the state, we are very concerned that the new system will not preserve key elements of the current Family Care and IRIS programs.
This is your chance to tell DHS what types of supports are important to you and your family! We need to have a big turnout at every public hearing to make sure the new long-term care program is good for people with disabilities and older adults. You can also email written comments to DHS at DHSFCWebmail@wisconsin.gov. For more information on how to submit comments to DHS, visit their website.
The LTC 8 Core Principles created by Wisconsin Long-term Care Coalition are talking points about what needs to be included in the new system.
Here is what you can do to help:
Send an action alert to your networks and encourage them to attend the public hearings
Contact your state legislators and members of the Joint Finance Committee and ask them to attend the hearings (see information on how to contact them below)
Attend one or more of the hearings and submit comments!
The first step in contacting your legislator is knowing who your legislator is. The easiest way to do this is the tool found on the Legislature’s home page, athttp://legis.wisconsin.gov. In the right-hand side of that page is a link that says Find My Legislators! Type your address in the box below that link to get the names of your state representative and senator.
Phone. You may leave a message for your legislator’s Capitol office or indicate your position on legislation through the toll free Legislative Hotline, at 1-800-362-9472.
E-mail. The e-mail addresses of members of the Wisconsin Legislature all have the same format. For members of the Assembly, the form is Rep.Jones@legis.wisconsin.gov; for members of the Senate, the form is Sen.Adams@legis.wisconsin.gov.
Recreating this memory has been such a blast for my sisters and me. We have almost too many ideas to fit into our little scene. I am so excited to see how our display of such a fun memory turns out!
ring 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”
characteristics of autism, but is not categorized on the autism spectrum. Like autism, Aaron has difficulty with communicating, walking, and when schedules and routines are broken. In addition, Aaron is completely non-verbal, and needs to hold someone’s hand or use a walker to walk.