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.
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.
Survival Coalition’s Summary of the 2015-17 State Budget:
People with disabilities, their families and advocates across Wisconsin have spent the last several months testifying at hearings, making phone calls, and sending messages to legislators, sharing their ideas for improving the lives of people with disabilities by engaging in the state budget process. The Survival Coalition of more than 30 disability organizations in Wisconsin has assembled the following summary of the state budget’s impact on the disability community.
It includes an assessment of the impact on the lives of people with disabilities, their families, and allies across a series of issues areas. Check it out:
WisconSibs is looking for a few volunteers interested in decorating our display and greeting our guests at this wonderful community event. Contact the WisconSibs office if you are interested.
Individuals with disabilities previously risked health benefits if they saved more than $2,000. Recently, WisconSibs Executive Director, Harriet Redman, and Board Chairman Ed Ruffolo, attended an event in Green Bay celebrating the signing of the Wisconsin ABLE (Achieving a Better Life Experience) Act which will allow accounts to be created in Wisconsin.
The U.S. Congress passed it and President Obama signed the ABLE Act in December 2014. Our thanks to U.S. Congressman Reid Ribble for meeting with WisconSibs families to learn the impact this bill would have on families in WI and throughout the U.S. Each state must now approve in order to set up accounts in each state. The Green Bay event thanked WI Representative John Macco for his leadership in passing the bill in Wisconsin.
From the National Alliance for Caregiving and the Sibling Leadership Network:
Department of Labor Clarifies Leave Protections for Some Siblings Under FMLA
There are over one million aging caregivers caring for adult relatives with disabilities. When aging parents are no longer able to provide care, siblings frequently take over the primary caregiving role. However, there has been a great deal of confusion about their eligibility for leave protections under the Family and Medical Leave Act (FMLA) during this transition. In general, FMLA does not currently cover siblings. Over the past year the National Council on Aging, Sibling Leadership Network, and other disability partners worked with the Department of Labor to issue new guidance clarifying eligibility for this population of caregivers. Learn more about the new guidance, and check out the fact sheet on FMLA.
There’s exciting news to share about an immediate fundraising opportunity for our organization. Local marketing agencies Coalesce Marketing and BConnected are collaborating on a four-day online “crowdfunding” experiment as part of their 2GETHER•4GOOD initiative. They have invited nine local non-profit organizations to be part of it – including WisconSibs.
Here’s what Lisa Piikkila of Coalesce had to say: “Once again, we were amazed and humbled by all of the good work happening in the Fox Cities…to further extend the impact of 2GETHER•4GOOD, we are providing every applicant the opportunity to participate in an online fundraising effort to help raise funds for their organization.”
The campaign starts today (May 21st) and runs through Sunday (the 24th), which means that over the next four days, we have the opportunity to raise funds that will support upcoming SIBshop and the SibCamp Scholarship Program.
Donating is easy, since the campaign is based on the CrowdRise platform. Just go to https://www.crowdrise.com/2g4gsibs and give what you can. And feel free to pass this link on to your friends so they can contribute as well!
Thank you for your support. Together, we can make this campaign a success!
Please note: CrowdRise pulls in organizational information from an independent non-profit database, which still has WisconSibs listed as the Fox Valley Sibling Support Network. While you’ll see the correct logo on our fundraising page, our name is still listed as FVSSN. This does not affect where your donations go: all the money we receive will be put toward the WisconSibs programs and services you know and love.
We are so excited that you are here. Whether you are visiting us for the first time, or have followed us for years, we welcome you to our new website…and our new name!
For years we have been serving siblings, professionals and others as the Fox Valley Sibling Support Network. It was a fitting name for a new nonprofit back in 1998 who was breaking through with new ideas and wanted to create and develop high quality programs and services for siblings throughout their lifelong journey.
As those programs developed and have grown, we’ve become recognized as a unique resource throughout the state of Wisconsin and beyond with our SIBshop, Sib Camps, teen leadership opportunities and adult sibling programs. The need for such services has grown, too, as more people with disabilities grow older, and siblings find themselves dealing with issues of aging parents, growing children, and quality of life choices with their siblings.
So lets get acquainted. Look around our new site. Whether you are a sibling or other family member, a professional, or a volunteer interested in the concerns of people with disabilities, we hope you find an opportunity to get involved in WisconSibs.
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.
