Episodes
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At 16, I faced a pivotal moment when my parents told me that they named me in their wills to care for my older sister.
As a sibling, being told I have this responsibility was daunting.
You might face a similar situation, unsure how to engage a sibling for support.
In this episode, I will show you how to engage neurotypical siblings for support and relieve the unspoken tension from future care conversations.
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About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
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Tuesday Apr 10, 2018
#042: Understanding the Sibling Experience, with Helen Ries
Tuesday Apr 10, 2018
Tuesday Apr 10, 2018
Welcome to Episode #042 of the Empowering Ability Podcast/ Blog. Today’s episode is about ‘Understanding the Sibling Experience, with Helen Ries.’ Before we get into the content of this episode, first some housekeeping because it has been awhile since you have heard from me.
Almost 4 months in fact.
In December 2017, I shared with you that the podcast would be taking a break for a couple of months so that I could develop new content and complete a few projects. However, life got busier than expected; with helping to run my family’s business, finishing the construction of my new house, supporting my sister to move out of my parent’s house, running my coaching practice for leaders and families working to create incredible ordinary lives for people with disabilities, and working on the adult sibling research we are going to share with you today.
Something had to give, and it was the podcast - even though I love podcasting. To give you an idea, publishing a 1- hour episode is about 10 hours of work, as I do all the recording, editing, writing, graphics, and publishing myself. So, moving forward I will be releasing an episode every 2 weeks, which is a much more manageable pace than weekly, also considering this podcast is currently free. I am a considering a ‘pay what you can model’ for those of you that are getting a ton of value from this podcast and wish to contribute to the production of the podcasts and the costs associated with it. I want this information to remain open and widely available to everyone, and this type of model will enable that. With all of that said, I have still been recording content over the last 4 months and I have some incredible conversations that I will be bringing to you over the next couple of months.
I’d love to hear from some of you to learn what has really resonated with you over the first 42 episodes. This will help me as I craft new content to bring you more of what you find valuable. Also, send me the names of guests you would love to hear on the podcast.
You can send me an email at eric@ericgoll.com.
Okay, enough housekeeping.
Today, my guest today is Helen Ries. Helen is a sibling, who supports her brother Paul, and they live together in Ottawa, Ontario. Helen also joined me on episode 9, which you can listen to here, where she talks in depth about her experience as a sibling and shares her insights. Helen is also an evaluator and consultant in the not-for-profit sector with an interest in social justice and poverty reduction, you can check out her work on her website.
Helen and I, discuss the research we have been doing to understand the life experience of adult siblings. The purpose of this research is to understand siblings so that we can better support adult siblings with resources, some of which we intend to create.
There were actually three of us completing this research, the third person being Becky Rossi. Becky just became the mother to her 3rd child, and wasn’t able to join us on the podcast – but here is a brief overview of our stories:
Helen’s Story:
All her life Helen knew that one day she would be responsible for her brother’s care. When that day arrived, it was early, unexpected and fast. The shock of suddenly becoming a caregiver still runs through her. There are moments when she remembers a time when she could go away for the weekend without planning it or when she didn’t have the nag of constant worry. It has been so far a difficult journey, but she is very proud of how her brother has thrived with her care and how their relationship has grown.
Becky’s Story:
Becky has spent the last seven years championing broad systems change through building community-based, non-traditional solutions to issues of isolation and vulnerability, both through her long-time work with P4P and as the sibling of an adult brother with Asperger’s Syndrome. Becky has a close relationship with her brother and – together with her sister and parents – they navigate the challenges and opportunities of creating a meaningful life, secure future and strong family.
Eric’s Story:
Sitting from his work desk Eric received a call from his distressed mother exclaiming "I just can't do it anymore". She was referring to caring for his sister, with a DD, 31 years old at the time. Eric had a decision to make – continue to stay arm’s length from his family, or jump in and play the role of a loving brother and loving son that he knew he could be. This started Eric's journey in supporting families with a loved one with a DD (including his own), through personal coaching and educating.
So, this is a big lead up to what we have learned, here it is….
The Sibling Life Journey
We looked at the common themes in the life of a sibling over the stages of a sibling’s life. These themes might not apply to every sibling’s life, but these are our observations from conversation with many adult siblings, and they line up well with the data we collected in a survey with over 360 adult sibling respondents.
0 years-18 years old: At a young age we get an understanding of disability, and we notice differences between ourselves and our sibling. Our parents are taking our brother or sister to many appointments and are often providing much more care to our brother or sister than they are for us. We are often asked to help out, and many of us just jump in wanting to help. This leads to siblings maturing faster than normal and developing a strong sense for caring for others at an early age. We also become our brother or sister’s protector. No one is going to mess with our brother or sister at school, or out in public without hearing about it from us. The maturity, carer, and protector are traits and values that we often carry with us throughout our lives.
18 years – 29 years old: At 18 typically siblings move out and go through a big growth and exploration phase. We get an advanced education, or head out into the working world, we try many jobs to see what we like, we travel. And our brother or sister, from age 21 on, is often living at our parents’ home with little to do and is actually in decline in terms of growth. During this time in a sibling’s life they will often describe having a feeling of guilt, as they are experiencing what life has to offer, and their brother or sister isn’t having the same opportunity. Siblings want their brother or sister to have the same life opportunities, but they don’t know how to support them to do so.
30 years – 39 years old: This stage of a sibling’s life is typically focused on career building and starting a family of their own. These things take a lot of energy and can mean a little less connection with our brother or sister and parents. This feeling of guilt can continue. We want better for our brother or sister but not really knowing how to help and use our influence. Siblings are often pushed out of the conversation my parents about their brother or sister because parents don’t want that ‘burden’ to be passed onto the other sibling.
40 years – 49 years old: Siblings have described having a ‘looming’ feeling in this life stage. More often than not, their brother or sister with a disability is still living with their parents, and the parent’s health is starting to decline due to age. Siblings can see this impending crisis coming, whether it is conscious or unconscious - it is keeping them up at night. What is going to happen when my parents can’t support my brother and sister? It is on me.
50+ years old: The parents decline to a point where they cannot provide care for their child with a disability, and someone else needs to take over that role. Many siblings step up to fill the role, all while dealing with their parents decline, their career, and their family. This can be a very challenging time period in a sibling’s life.
The Survey Findings:
There are 7 key findings that we share in the ‘Understanding the Sibling Experience’ report, here is a small glimpse into a couple of the findings that Helen and I discuss on the podcast. I recommend you check out the report, hosted by Partners For Planning (P4P), if you are interested in reading about all of the findings.
The Findings:
Where are our brothers and sisters with a disability living? Well it turns out that 85.6% of our brothers and sisters aged 20 to 29 years old are living with their parents. In comparison, the Canadian national average is 34.7% for people aged 20-29 years old. The percentage of people with disabilities living with their parents stays high well into the 40-49 year old age bracket, at 58.5%.
What are the current challenges identified by siblings? Siblings identified the mental health of their brother or sister and the mental health of their parents as the most frequent challenge they face. Followed by hosing options for their brother or sister, managing relationships, and emotional supports for themselves.
If you are interested in the other 5 findings, check out the report here.
Our Recommendations:
In our report, we outline 8 recommendations for siblings, families, organizations, and government to consider.
These recommendations include:
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A deeper study of siblings
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Adult siblings connect with other adult siblings to share their experiences
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Development of resources and tools for adult siblings
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Support for mental health of our families
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Innovative housing solutions
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Poverty reduction
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Siblings are involved in the family planning discussions
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Organizations reach out to siblings and support them.
I encourage you to read our report to learn more about these recommendations in depth, click here.
The Sibling Collaborative:
So, what is next for us? (Helen, Becky, and I)
We have done a lot of thinking about what we have learned about siblings and we have created a new project, called ‘The Sibling Collaborative’ to support siblings needs.
The purpose of the Sibling Collaborative is to ‘Connect Siblings and Strengthen Families’.
The Sibling Collaborative has a core set of values that guides our work:
Realizing Change with Compassion: We take action with the critical input and consideration of our brothers and sisters with a DD and our families.
Mutual Respect: We give people agency over their own lives, with consideration for all those involved.
Collective Solutions: We find a way forward by learning, working and co-creating together.
Unlocking Potential: We hold a big and bold vision for our brothers and sisters as well as our families. Our intrinsic creativity and resourcefulness knows no limit.
For this collaborative to be a collaborative we need others to collaborate with! We would love other siblings, self-advocates, family members, and organizations that share these values to partner with us on this journey. You can join the sibling collective mailing list here, to be updated on the journey as it unfolds.
Helen leaves us with a quote from friend to all siblings, Don Meyer, “If you want to invest in the long-term well-being of people with developmental disabilities, you need to invest in their brothers and sisters.”
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric Goll
Resources:
The Sibling Collaborative Facebook Page: Click Here: Sibling Network
Join The Sibling Collaborative Mailing List: Click Here
Email: info@siblingcollaborative.org
Understanding the Sibling Experience Report: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
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Thursday Nov 30, 2017
#039: Siblings - Our Most Important Relationship, with Don Meyer
Thursday Nov 30, 2017
Thursday Nov 30, 2017
Don is one of the world’s leading experts on siblings, and has supported siblings for the last 35 years.
Don Meyer, Director of the Sibling Support Project.
The Sibling Support Project is a national program in the United States, with international presence, dedicated to the millions of brothers and sisters of people with developmental disabilities. The program is supported by Washington state’s largest early intervention center, the Kindering Center.
Why Are Brothers and Sisters So Important?
Paraphrasing from the podcast, Don Shares:
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Anything we can say about being a parent, we can put ditto marks underneath for siblings. The research says siblings have parallel experiences to their parents. But, when we look at the services, and considerations that siblings get - siblings get the short end of the stick. In the USA, there are 200-300 people that have full-time jobs to support parents, there is 1 person with a full-time job supporting siblings (and that is Don).
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Brothers and sisters have the longest lasting relationship with a person that has a developmental disability. This relationship is lifelong. When mom and dad are no longer available the brother and sister’s will make sure their sibling will live a dignified life in the community.
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No one logs on more moments and minutes with their brother or sister.
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No one has a greater impact on the social development of a person with a developmental disability.
Why Are Siblings Underserved?
Paraphrasing from the podcast, Don Shares:
Siblings are off the organization’s radar screens because they not squeaky wheels. As siblings outlive their parents service providers are beginning to realize there are these brothers and sisters out there.
If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul.
There is reason to believe that intervening with siblings, even young siblings, has a benefit to everyone.
How Can Service Providers Invest In Siblings?
Paraphrasing from the podcast, Don Shares:
Service providers can create initiatives that specifically reach out to brothers and sisters, and they can change their policy to explicitly invite brothers and sisters.
Provide siblings information that they think is important. Brothers and sisters have a lifelong need for information. This is a parallel that siblings share with parents.
How do siblings get their information? They are lucky if they get it from their parents. Educational materials need to be prepared specifically for siblings.
Sibshops
Don goes around the world and shows people how to start Sibshops; peer support and education programs for school aged siblings that have a brother or sister with a developmental disabilities. There are 350 Sibshops worldwide, including in the USA (250), Canada (30), Iceland, Ireland, and Japan. Sibshops got their start in 1982, and Don has been training people on how to run Sibshops since 1990. The typical Sibshop age spread is 8-13 years old. This age spread is tweaked all the time – sometimes as low as 6 years old, and some organizations even have teen Sibshops.
One of the biggest benefits of Sibshops that Don has observed is the peer to peer support and connection with other kids that are walking down a similar path. Don has met many siblings that don’t talk to another sibling until they are in their 40’s! It is unheard of for a parent to wait 40 years before meeting another parent with a child that had a developmental disability. But, this is the reality with siblings. (In my own experience, I didn’t connect with another sibling until I was in my late 20’s. Also, I recently facilitated an adult sibling meeting and it was the first time 30% of the group had ever connected with another sibling.)
Don shares, “We are giving young siblings a chance to meet young siblings, learn about the services their brothers and sisters are getting, and to learn how others are dealing with sticky situations. We have designed Sibshops to be fun, because they are for kids. We have a celebration of contributions made by brothers and sisters, and we mix content activities with recreational activities.”
The University of Washington has researched the effectiveness of Sibshops and found:
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Over 90% of respondents said they had a positive effect on how they felt about brother or sister.
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2/3 of respondents were taught coping strategies.
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94% said they would recommend Sibshops to others.
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3/4 of respondents said Sibshops impacted their adult lives.
Don Shares, “(The value of Sibshops is…) to be in the community of people who get it. To vent in a non-judgmental forum, to know you are not alone, and learn about resources and strategies.”
On the podcast, Don shares the unique concerns and opportunities that he has observed after interacting with 1000’s of siblings around the world. The list includes concerns like guilt and embarrassment, but also includes opportunities like maturity and diversity. I recommend you take a listen to the podcast to hear all of Don’s insights.
This podcast is packed full of resources for siblings, which are all listed below in the resource section.
A big thank you goes out to Don for joining us on the podcast and sharing his work and insights on siblings!
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Social Networking Groups for Siblings:
Sibnet Adults Click Here
Sib Teen Click Here
Sibshop curriculum Click Here
The Sibling Survival Guide, created with Sibling Leadership Network. Click Here
The Sibling Slam Book – by teen sibs for teen sibs. Click Here
Views From Our Shoes – collection of essays from young siblings. Click Here
Thicker Than Water – collection of essay from adult siblings Click Here
Being the Other One, by Kate Strohm Click Here
Riding The Bus with My Sister, by Rachel Simon Click Here
Special Siblings, by Mary McHugh Click Here
Paper: What siblings would like parents and services providers to know. Click Here
Contact Don
Email: info@siblingsupport.org
Phone: 206-297-6368
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Oct 10, 2017
#032: Siblings and The Power of 'Why Not?', with Melissa Janson
Tuesday Oct 10, 2017
Tuesday Oct 10, 2017
Siblings supporting their brother's and sister's on friendships, dating, and dreaming big, with Melissa Janson
Today, we are kicking off our second mini-series on the podcast, and over the next few months we are going to focusing in on siblings. Siblings are often forgotten about in the family equation when there is a disability in the family, yet they can play such an important role. In this mini-series, we are going to be trying to answer a couple of questions about siblings; ‘What role can siblings play in their brother’s and sister’s lives?’, and ‘What support and resources are available for siblings?’.
If the sibling topic is one that interests you, you can listen to Episode #009 with Helen Rieswhere Helen shares her story and we have an important discussion about starting a conversation with your family about the role you want to play as a sibling. There are often so many assumptions about the roles family members are going to play. These assumptions are not always accurate and can lead to breakdowns, which is why it is so important to discuss the roles each family member wants to play. You might be surprised in how involved your family members want to be!
To kick off the mini-series on siblings, we have guest Melissa Janson on the show. Melissa works professionally in the disability sector, and is the sister to Yaniv, whom has a disability. Melissa and I discuss the role that we can play to support our brothers and sisters. We have a great conversation about friendships, dating, and dreaming big.
Melissa’s Story
Melissa (now 28) was born in Israel and moved to New Zealand with her family in 2000. Her younger brother, Yaniv (now 25), was diagnosed with aspergers when they arrived in New Zealand. Melissa and Yaniv went to the same main stream school where Yaniv was bullied, and this was frustrating to Melissa. People couldn’t see Yaniv’s gift and skills like Melissa could.
Melissa explains, “People with aspergers can struggle to pick up social ques. It doesn’t come naturally to Yaniv to come up to someone and start a conversation, and sarcasm and humor is hard.” However, Melissa goes on to explain that Yaniv is quite funny!
Melissa works professionally in the disability sector for an anthroposophical service provider that is grounded in the theories of Rudolph Steiner which takes a holistic view of the person; spiritually, emotionally, and physically.
Melissa’s family is starting to think about what the future looks like, as a family.
Building Relationships
Melissa is very close with Yaniv. Yaniv wants to know what is happening in Melissa’s life, and Melissa wants to know what is going on Yaniv’s life. Melissa shares, “Being close and connected is my focus.”
Melissa always tries to Include Yaniv in her social outings with friends. Melissa shared that, Yaniv is sometimes not sure why and can put up some resistance, but often comes along anyway.
On the podcast, I share the story of my conversation with the great Jean Vanier. Jean left me with this piece of advice, “Befriend people that have disabilities, and influence others to befriend people with disabilities.” Melissa is playing this important role for her brother.
On the podcast, Melissa shares the story of her brother’s love interest, and how she played a facilitator role to bridge the social gaps for her brother and his date. (It is a fun story, and worth a listen).
The Power of ‘Why not?’
Melissa shares, “Aiming high is something we really have to get used to doing, because I think there’s that whole bigotry of low expectations in the disability sector. As siblings, we can support by asking ‘Why not?’.
Yaniv is a painter and has a great career as a creator. He has published 4 books, and he has sold 160 paintings. Melissa shares, “People aren’t seeing him for his disability any more, they are seeing him as an artist. My other brother and I always feel like we are chasing Yaniv.”
Melissa shares, “We need to be looking at what risk can he take. I look at this positivity. From a relationship perspective when talking with my mom she didn’t think it is possible for him to have a relationship, and I responded, why not?... he is totally capable. And if he wasn’t we would facilitate that.”
Melissa also shares this risk-taking mindset from a career standpoint, “There is a lot of risk and uncertainty in the option of trying something first and learning the skills afterward. We are forced to figure it out when we are in the situation. There is risk here, but there is also a lot of growth that can happen.” On the podcast, Melissa shares the story of Abdul-Karim Bouchafaa and how his growth has taken off by following his passion and creating his career as a Motivational non-speaker.
Melissa advises siblings to stay connected with their sibling, read up, listen to podcasts, and gather success stories to overcome adversity in your family. Also, she suggests we look out for what your sibling is really passionate about, and to help them ride that wave and pursue that as a career. I am grateful for Melissa joining me on the podcast to share her story and insights as a sibling!
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Connect with Melissa
Facebook: Melissa Janson (NZ)
Email: melissajanson22@gmail.com
Yaniv’s website: http://www.yanivjanson.com/
Abdul-Karim Bouchafaa Motivational Non - Speaker: Watch Video
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Monday May 01, 2017
#009: Helen Ries - Siblings empowering siblings with a disability
Monday May 01, 2017
Monday May 01, 2017
A sibling care-giver tells her story of becoming her brother's go to person after her parents passed sooner than anyone expected. This podcast is important for all parents and siblings to listen to.
How to contact Helen Ries:
Resources:
Ontario Independent Facilitation Network OIFN.ca
Facebook Groups for Siblings
Canada - Click Here
USA - Click Here