Episode 3: Chronic Sorrow and Grief with Maleita Olson

Subtitle: Part of the Our Parallel Paths: A Future for My Loved One With a Disability... and For Me! podcast with Geralyn Arango Deeley, Ed.D.

Recording Date: June 27, 2024

Transcript: Download Transcript HERE

Keywords: Chronic Sorrow, Grief, Gerry Arango Deeley, Geralyn Arango Deeley, Maleita Olson, Sorrow, loss disability, transition, caregiver, parent, Our Parallel Paths

Episode Summary: In this podcast episode, Dr. Geralyn Arango-Deeley interviews Maleita Olson, a licensed clinical social worker and mother of four, about the concept of chronic sorrow and grief in the context of parenting a child with special needs. They discuss the challenges and losses that parents may experience, such as the loss of privacy, the loss of feeling like an expert on their own child, and the loss of being able to make mistakes without feeling guilty. They also emphasize the importance of acknowledging and validating these feelings, as well as finding support and community among other parents who can relate to their experiences. The conversation highlights the need to hold both the sorrow and the joy of parenting a child with special needs, and to recognize that it is okay to feel both. Maleita shares a quote from an autistic individual that encourages parents to mourn the expectations they had for their child, rather than mourning the child themselves. They discuss the ongoing process of letting go and the cyclical nature of grief. The episode concludes with a message of hope and solidarity for all parents on parallel paths.

Topical Index: Introductions [00:00] Chronic Sorrow article [01:12] Introducing Maleita Olson [04:46] Culture vs. the right to sadness [06:40] Compounding of losses [08:18] Disability and a sense of loss [10:15] Freedom to make mistakes [12:51] Micro-lossess [17:10] Internalizing our children's struggles [22:32] As a parent I am responsible for everything [23:53] Different responses to loss [26:01] walking through chronic sorrow [27:55] It is What It is [32:44] Balancing sorrow and joy [34:55] Importance of community [36:40] Closing [45:37]

Resources: A Grief That Never Ends: Chronic Sorrow

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Supports Coordination - An Interview with Jessica Fenton, Miracle Works Pt. 2

Subtitle: Part of the Our Parallel Paths podcast series hosted by Gerry Arango Deely, Ed.D.

Recording Date: May 3, 2024

Transcript: Download transcript HERE

Keywords: Supports Coordination, waiver funding, CMS, IEP, ISP, transition, Our Parallel Paths, Gerry Arango, Geralyn Arango Deelely, Jessica Fenton, Miracle Works, advocacy, family, self-direction

Episode Summary: In this episode host Geralyn Arango Deeley and guest Jessica Fenton, continue their discussion on the role of supports coordination in helping individuals with intellectual disabilities and their families navigate the system and access the services they need. Jessica shares her some of her own journey into this line of work. They continue to explore how supports coordination works, including the importance of regular monitoring and self-advocacy. They also touch on the concept of self-direction and how families can optimize the use of funding through supports coordination.

Topical Index:

Podcast Intro [00:00] Guest introductions [01:11] Jessica's journey to Supports Coordination [03:07] About Miracle Works [05:56] Choice of providers, services, supports coordination [11:12] How to make changes [12:03] Finding a Supports Coordination Organization [14:58] Advocating for you and your loved ones [19:06] How can a supports coordinator help? [21:26] Self-directed services [24:19] Blending service models to meet your needs [29:15] Closing [30:09]

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Supports Coordination - An Interview with Jessica Fenton, Miracle Works

Subtitle: Part of the Our Parallel Paths podcast series hosted by Gerry Arango Deely, Ed.D.

Recording Date: May 3, 2024

Transcript: Download transcript HERE

Keywords: Supports Coordination, waiver funding, CMS, IEP, ISP, transition, Our Parallel Paths, Gerry Arango, Geralyn Arango Deelely, Jessica Fenton, Miracle Works, advocacy, family

Episode Summary: In this episode, host Geralyn Arango Deeley introduces her guest, Jessica Fenton, who is a Supports Coordinator and Director of Miracle Works, a Supports Coordination Organization in Pennsylvania. They discuss the role of supports coordinators in locating, coordinating, and monitoring services for individuals with disabilities. They also talk about the different waivers available in Pennsylvania and the importance of advocating for the needs of loved ones. They touch on the transition from the Individualized Education Program (IEP) to the Individualized Support Plan (ISP) and the shift in language between goals and outcomes. The episode ends with a brief discussion of some upcoming changes in the system.

Topical Index:

Season 4 Kick-Off [00:00] Unique challenges [01:12] Moving from entitlement to qualifying [03:05] Introducing the Supports Coordinator! [04:55] Working definitions [06:44] The budget - needs based [08:42] Waivers - what are they [10:51] Advocacy - be your own voice [13:40] First step - reaching out to the county AE [16:57] Do waivers move with you? [20:09] Goals vs. Outcomes [22:42] Changes coming to Pennsylvania [25:05] Closing of pt 1 - intro to pt 2 [29:48]

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Write About It, Part 2 - Journaling Tips

Recording Date: February 14, 2024

Keywords: Journaling, writing, Gerry Arango, Geralyn Arango-Deeley, Our Parallel Paths, self-expression, journaling tips,

Transcript: Download transcript HERE

Episode Summary: Gerry continues sharing about her writing journey, and encourages caregivers to incorporate the habit of writing or "journaling" into their lives as a tool for problem solving, gaining perspective, and emotional support. In this second episode on journaling Gerry shares some quick and easy tips for making journaling a habit in your life.

Topical Index:

• Introductions [00:00]
• Recap of benefits of journaling [01:36]
• Not a destination - it's a process [05:21]
• Use what makes you comfortable [08:10]
• Write every day [08:41]
• Make it easy [[09:55]
• Don't edit yesterday's entries [12:02]
• Journaling groups [13:12]
• Be patient with yourself [15:02]
• Closing [17:43]

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Write About It, Part 1: Intro to Journaling

Recording Date: February 5, 2024

Keywords: journaling, writing, keeping a journal, stress reduction, Our Parallel Paths, Gerry Arango, Geralyn Arango-Deeley, benefits of writing

Transcript: Download transcript HERE

Episode Summary: Over the next two episodes Gerry shares her writing journey – journaling. Journaling is a tool Gerry has long used as a means of personal expression, stress reduction, and problem solving. She feels journaling has provided her with a sense of clarity and perspective as she has travelled the Parallel paths of caregiving with her mother and friend, and continues to travel with her son Nic. Join us in this episode as Gerry introduces us to the gift of writing, and some tips on getting started. Gerry follows this up next episode with more tips on journaling as we navigate these Parallel Paths together.

Topical Index:

• Introduction [00:00]
• Holiday Stresses [02:04]
• Ruminating on our stressors [06:06]
• journaling - a long time habit [06:41]
• Caregiving for mom, Nic, and James [07:27]
• Writing as an outlet for emotions [09:07]
• From journal to memoir [10:26]
• Journaling is a story - your story [11:24]
• Benefits of journaling [13:16]
• Journaling is a safe space [16:52]
• More benefits of journaling [17:09]
• Closing [23:11]

Resources:

• Journaling for Emotional Wellness - Rochester Medical Center
• Your journal For Life - the Day One App

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Following Your Lead - an Interview with Teri Brewer

Part of the Our Parallel Paths podcast series with Gerry Arango, Ed.D.

Recording Date: December 5, 2023

Transcript: Download Transcript HERE

Keywords: SAU1, Self-Advocates United as One, Teri Brewer, William Brewer, Disability, independence, supporting independence, self-advocacy, advocacy, transition

Summary: In this episode, Gerry interviews parent Teri Brewer about her journey supporting her son William to live a meaningful life, and her involvement with SAU1 (Self Advocates United as One) with their work in promoting self-advocacy for individuals with disabilities.

Teri shares her journey of discovering William's abilities and advocating for his needs, and the importance of having a strong support system. The main focus for Teri and William's future is finding way to support William in pursuing his dream to live independently. Teri’s interview emphasizes the importance of following our family members’ lead and celebrating their achievements along the way. Notes go here

Topical Index:

• Introductions [00:00]
• SAU1 (Self Advocates United as One) [03:01]
• How We Got Here [03:40]
• Summer of Tears [04:31]
• One Day At a Time [06:41]
• School Years [06:16]
• First Act of Advocacy [09:27]
• Self-Direction [11:00]
• Mom and Dad take a Vacation [12:51]
• Gaining Confidence [14:07]
• Following Wiliam's Lead [15:30]
• Preparing for a Future Without Us [17:23]
• Early Years - Finding Our Way Alone [18:29]
• Transition [22:17]
• The Importance of a Support System [25:43]
• Never Getting Over the Wonder [27:36]
• SAU1 revisited [30:49]
• Preparing for the Future [34:11]
• Closing [38:53]

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_Siblings’ Perspectives: A Conversation with Emily Holl and Courtney Arango

Recording Date: October 4,2023

Transcript: _Download transcript HERE

Keywords: SibShops, Sib20, SibTeen, Sibling Support Project, Sibling Leadership Network, siblings, Emily Holl, Geralyn Arango-Deely, Courtney Arango, Our Parallel Paths, sandwich generation, peronal futures planning, PATH, end of life planning

Summary: In this episode Gerry talks with two siblings – Emily Holl from the Sibling Support Project, and her own daughter, Courtney Arango – about their experiences growing up with their siblings who have disabilities, and the importance of planning for the inevitable time when parents are no longer in the picture. This important episode explores the many facets of caring for a sibling, the resources available, and the importance of building a network of support around you during this time.

Topical Index:

• Introductions [00:00]
• Siblings’ roles [01:20]
• Our family situation [02:49]
• Introducing Emily Holl – author and advocate [03:43]
• Introducing Courtney [05:23]
• The “sandwich generation’ [05:53]
• Courtney shares childhood perspectives [06:42]
• Courtney’s current thoughts – anticipating change [10:35]
• Emily’s journey [14:01]
• o Change driven by Peter
• o Planning a move to New York
• o Polices and procedures for funding eligibility requirements.
• o Investing in both of our futures
• o Caregiver from afar
• Finding People who share your experiences.
• Sibling Support Project
• o SibNet, Sib20, SibTeen, etc.
• o Understanding and Validating our experiences
• o Who lives my story?
• Friends and acquaintances’ reactions [27:17]
• Facing difficult conversations [28:32]
• o Include everyone
• o Have the conversation
• o Minimize the impact on everyone
• o It’s okay to have your own dreams
• All the pieces of planning [31:19]
• o Live in the moment
• o Have the conversations
• o Use your resources
• o PLANS CHANGE… it’s okay!
• o Re-visit now and then
• o Build in fun and relationships
• o What is the nightmare – confront it head on
• o Celebrate successes / progress

Resources

• ARC Center for Future Planning
• Sibling Support Project
• SIBSHOPS – Sibling Support Project
• The Future is NowCurriculum – Letter of Intent
• Connecting with Other Sibs

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Individuation - What I Want & Why It Matters with Maleita Olson

Part of the Our Parallel Paths podcast series

Recording Date: August 15, 2023

Transcript: Download Transcript HERE

Keywords: Maleita Olson, Gerry Arango-Deely, Our Parallel Paths, Individuation, transition, care-giving, care takers, caretakers, caregiving, adulthood, hover-mother, dignity of risk, independence, interdependence

Summary: Gerry talks with social worker / parent Maleita Olson about the issues faced when "launching" our young adults with disabilities into adulthood. Some topics included are hovering, dignity of risk, comfidence building, and more. This episode also includes a discussion about individuation -- identifying what we want for ourselves in our transition as caregivers, and why it matters that we explore these things.

Topical Index:

• Introduction [00:00]
• Indivdiuation [02:28]
• A shift in parenting: hover-mother [04:11]
• Fear of Failure [05:33]
• Failure to Launch [07:37]
• Who's filling the void> [10:25]
• Tips:
• • We are not responsible if bad things happen [11:28]
• • Risk taking can be good and healthy [12:01]
• • Creating self-worth and confidence in kids [13:00]
• • Teaching resilience [15:47
• Sharing the spotlight / focus [24:02]
• Generational and Cultural shifts [25:36]
• Who are we - what's our identify [28:26]
• Dealing with guilt [22:13]
• What happens when I am gone [34:43]
• Celebrating the launch [42:54]
• Closing [47:14]

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An Update From Gerry...

Part of Our Parallel Paths: A Future For My Loved One With a Disability.... and For Me!

Recording Date: September 6, 2023

Transcript: Download transcript HERE

Keywords: Change, Individuation, remote supports, Our Parallel Paths, Gerry Arango, Geralyn Arango-Deely, navigating crises, dignity of risk, transition, disability, family, supports

Summary: Welcome back to Season 3 of Our Parallel Paths... In this episode Gerry shares a brief update of her, Nic, and their family's continuing journey towards their joint goals and dreams for the future. Gerry also supplies some hints for upcoming episodes. We hope you join us on Our Parallel Paths...

Topical Index:

• Introductions [00:00]
• Why an update? [01:32]
• Family changes [02:45]
• Individuation [04:23]
• Bumps In the Road - Supports and Health [05:37]
• A closer look at the future [10:29]
• Future episodes [12:00]
• Closing [12:25]

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More on Managing Supports - A Conversation with Bradley Beck Part Two

part of the Our Parallel Paths series

Recording Date: May 1, 2023

Transcript: Download transcript here

Keywords: Our Parallel Paths, Managing Supports, Disability, Geralyn Arango, Geralyn Arango-Deely, Gerry Arango, Gerry Arango-Deely, Hiring support staff, Bradley Beck, supports broker

Summary: Gerry continues her discussion of managing the supports for your loved one as roles change. This is part two of Gerry's conversation with Bradley Beck, a support broker, who shares his perspectives from the "outside looking in".

Topical Index

• Introduction [00:00]
• Continuing the Conversation [01:04]
• Feedback - Self-assessment. [02:31]
• Providing feedback! [04:45]
• Tying feedback to raises [06:35]
• Building a diverse team [11:02]
• Providing acknowledgement that matters [12:54]
• Training and resources [16:26]
• Team building - an ongoing process [19:49]
• Patience [23:44]
• Closing [25:08]

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Notes go here

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