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

Recording Date: January 23, 2025

Transcripts: Download the transcript for this episode,

Keywords: caregiving, What Would Nola Do? Gerry Anderson Arango, Geralyn Arango Deeley, disability, support, independence, transition, Our Parallel Paths

Episode Summary: Host Geralyn Arango Deeley, shares her journey as a caregiver, including the publication of her memoir "What Would Nola Do?", which explores the lessons she learned from caring for her son with Down Syndrome, her mother with dementia, and a friend with a traumatic brain injury. Gerry shares six key caregiving lessons that she continues to apply in her life, including the importance of respecting privacy and personal control, recognizing that disability is a constant, thoughtful advocacy, combating loneliness, redefining "normal", and appreciating the support her son provides to her. Gerry announces the release of the 10th anniversary edition of her memoir in January of 2025, and encourages listeners to check it out as it may provide helpful insights for their own caregiving journeys.

Topical Index:

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

Recording Date: January 23, 2025

Keywords: disability, speech therapy, speech and language therapy, speech and language pathologist, Patrice Gilbert, Gerry Arango, Geralyn Arango Deeley, transition, independence, communication, Our Parallel Paths

Transcript: Download the transcript from today's episode.

Episode Summary: This episode discusses the importance and value of speech therapy for adults with intellectual disabilities. The host, Geralyn Arango Deeley shares her and her son Nic’s experiences with speech therapy, and how it has impacted Nic’s life. Gerry’s guest, speech language pathologist Patrice Gilbert, shares her approach and philosophy for working with adults. Patrice emphasizes needing to presume competence when working with people and setting high expectations for success. She encourages involvement of all communication partners in the process to better ensure generalizing what is learned throughout all areas of a person’s life. This conversation highlights the ongoing value of speech therapy for empowering adults with intellectual disabilities to improve their communication abilities and participate more fully in their communities.

Topical Index:

Introduction [00:00] Nic's early speech therapy experiences [02:21] Recognizing the need for speech therapy [04:28] Introducing Patric Gilbert, speech pathologist [05:17] What does speech therapy for adults look ike? [06:57] Some guidelines [09:02] Importance of expectations [13:04] Importance of communicating [14:57] Respectful support [16:04] Communication as a two way street [19:42] Checking in [21:50] Nic's progress [24:24] The different forms of communication [25:57] Fining services [27:32] Importance of the correct assessment [30:07] Closing [34:14]

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This episode is part of the Our Parallel Paths: A Future for My Loved One With a Disability... and For Me!

Transcript: Download transcript HERE

Recording Date: August 28, 2024

Keywords: person centered planning, The PATH, Planning alternative tomorrows with hope, Inclusion Press, Jack Pierpoint, Marsha Forrest, planning for the future, planning, disability, caregiving, Gerry Arango, Geralyn Arango Deeley, transition

Summary: In this episode Gerry discusses the concept of "person-centered planning" and the PATH (Planning Alternative Tomorrows with Hope) tool, which can be used not only for individuals with intellectual disabilities, but also for their family members and caregivers. Gerry explains how the PATH process works, starting with envisioning a "North Star" or long-term goal, and then breaking that down into smaller, achievable steps. She shares her experiences using this tool, and encourages listeners to consider creating a PATH for themselves, as the paths of family members and individuals with disabilities often parallel each other. Gerry emphasizes the importance of self-care and planning for one's own future, in order to provide the best support for a loved one.

Topical Index:

• Introductions [00:00]
• Concerns about the future [02:12]
• What is a PATH? [03:23]
• Putting yourself first [03:54]
• My introduction to the PATH tool [05:40]
• Describing the PATH [08:22]
• The recipe for the PATH… what you need [11:09]
• The steps of the PATH [12:11]
• Link to the PATH template download

PDF. WORD

• The PATH… an ogoing process [17:12]
• Closing [18:12]

Resources: The PATH tool

• WORD
• PDF

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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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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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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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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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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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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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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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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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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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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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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. She invites Bradley Beck, a support broker, to join in the conversation and share his perspectives from the "outside looking in". This conversation spans two episodes. Don't forget to listen to part two as well.

Topical Index

• Introduction [00:00]
• What is a supports broker [02:00]
• Releasing of roles. [03:33]
• Clear expectations! [04:34]
• Giving feedback [11:17]
• Trust and Empowerment [15:44]
• Building relationships [19:05]
• Closing / continuing the conversation [22:34]

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part of the Our Parallel Paths series

Recording Date: April 4, 2023

Transcript: Download transcript here

Keywords: Our Parallel Paths, Managing Supports, Disability, Geralyn Arango, Geralyn Arango-Deely, Gerry Arango, Gerry Arango-Deely, letting go, promoting independence

Summary: Gerry discusses the transition of roles all caregivers go through as their loved ones become adults, and their supports are shifted to other caregivers. What are the challenges of managing supports for our adult loved ones while providing room for growth and independence?

Topical Index

• Introduction [00:00]
• Gerry's (aka "Charlie's") Angels [00:55]
• Who's the Boss? [03:32]
• You have to love checklists! [04:02]
• Gerry's Top Five checklist [05:25]
• Communicate [05:55]
• Delegate [09:45]
• Check In [12:30]
• Acknowledge their work [13:27]
• Understand [15:06]
• Closing [16:48]

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An update from Gerry and Nick

Recording Date: February 3, 2023

Transcript: Transcript available for download HERE

Keywords: Gerry Arango, Geralyn Arano Deely, dignity of risk, letting go, hover mother, Eric Gall, transition, parallel paths, independence, inter-dependence, adulthood, disability, EmpoweringAbility.org, Ultimate Guide to Independence

Summary: Gerry shares an update as Nick's 25th birthday approaches. Discussed are issues of independence vs. inter-dependence, dignity of risk, letting go, and more.

Topical Index:

• Introduction [00:00]
• Celebrating Milestones [01:01]
• Happy Birthday Prefrontal Cortex! [02:30]
• Hover Mother [03:14]
• Friends along our paths [04:47]
• Ultimate Guide to Independence [05:22]
• -- Believe the Impossible [06:11]
• -- Get Out of the Way [07:48]
• -- Get Comfortable with Broken Plates [08:49]
• -- Look Out for the Hero... or she-ro [09:57]
• Closing [13:40]

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Subtitle: Parent / Advocate / Educator

Recording Date: November 15, 2022

Summary: In this episode Gerry interviews Linda Carmona-Bell, a member of PEAC (Pennsylvania Education for All Coalition). Linda serves as president of PEAC, and has worked for over 30 years for the New jersey Department of Education. She has experience in bi-lingual education, educational technologies, and more. Linda shares the journey of her and her daughter, Sienna, as they navigate Sienna's journey through school, to the job search and more.

Keywords: Transition, Disability, Our Parallel Paths, Geralyn Arango=Deely, Linda Carmona-Bell, C2P2, PEAC, PATH, transition planning, personal futures planning

Topical Index:

• Opening [00:00]
• Introductions [01:18]
• Exhaustion, Worry, Pride [02:31]
• Two Visions [03:09]
• Confidence & Competence – Partners in Policy Making (C2P2) [04:04]
• What Do You Need? [06:13]
• the vision drives the planning [09:25]
• Let her be her [10:57]
• Transition planning at age 5 [12:13]
• Customized Employment – schedules and planning [14:29]
• what it looks like for me, the parent [17:24]
• taking care of myself [18:57]
• asking for help [20:46]
• what I wish I knew… [21:31]
• Language matters [22:44]
• We are a team – my voice matters as well [25:30]
• I did/can create change in the system [29:24]
• Good intentions [31:49]
• next steps [34:58]
• closing [38:51

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Creating an Awesome Ordinary Life...

Recording Date: June 22, 2022

Summary: Gerry interviews Eric Goll, founder of empoweringability.org website and podcast. Eric provides resources, guides, and supports to families struggling to create ordinary lives for their family members and themselves. Listen as Eric shares his journey and lessons learned as Sarah's brother, supporter, and advocate, to creating an awesome ordinary life for both Sarah and himself. We hope you enjoy this and all of the episodes in Our Parallel Paths...

Transcript: Download transcript here.

Keywords: Eric Goll, sibling, awesome ordinary life, person centered supports, empoweringability.org, disability, autism, independent living, Gerry Arango, parallel paths, our parallel paths, advocacy, social model of support, social model

Topical Index:

• Overview [00:00]
• Introductions [01:11]
• Importance of a sibling's voice [02:37]
• who will be the caregiver [04:11]
• family in crisis [05:55]
• making decisions [06:40]
• social model of support06:13]
• importance of relationships [11:38]
• lack of support from the system [14:18]
• making connections [15:42]
• imagining new possibilities [16:36]
• contrast of opportunities [18:22]
• Lessons learned [21:22]
• reclaiming the role of sibling [23:01]
• taking care of myself [24:30]
• having difficult conversations [28:30]
• Closing [34:56]

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Subtitle: Take-aways & Reflections

Recording Date: June 27, 2022

Transcript: Download transcript here.

Keywords: Our Parallel Paths, Gerry Arango, Ruth Landsman Dianne Perry, Darcy Elks, Suzanne Muensch, dignity of risk, self-care, for caregivers, information sharing, when the caregiver passes, setting boundaries, creating a support network, Gerry Arango

Summary: Gerry shares some thoughts and reflections she has had as Season One of "Our Parallel Paths: A Future for My Loved One With a Disability... & Me! "comes to a close. I you are new here, we encourage you to listen to all of the season one episodes, and to join us for season two!

Topical Index:

• Introduction [00:00]
• Applying it to ourselves [01:52]
• Learning to say no [03:30]Ask for help [03:46]
• Find you drive [04:30]
• Be a fried to others [06:01]
• Information Sharing [06:48]
• Tools to use [07:57]
• Dignity of Risk [10:18]
• Resiliency [11:21]
• Closing [12:54]

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CHALLENGES, STRUGGLES, & VICTORIES...

Recording Date: June 22, 2022

Summary: Gerry interviews Darcy Elks, parent / advocate / and presenter. Darcy shares the struggles, challenges, and yes - the victories of her family's journey towards Mary's future, and their own. Darcy also shares the emotions journey as they navigate support systems, education, and the dignity of risk. We hope you enjoy this and all of the episodes in Our Parallel Paths...

Transcript: Download transcript here.

Keywords: Darcy Elks, risk, dignity of risk, person centered supports, setting goals, sharing the vision, planning tools, Our Parallel Paths, Gerry Arango

Topical Index:

• Overview [00:00]
• Introductions [01:24]
• Hard times and What We've Learned [02:32]
• The Vision - Mary would be missed if she wasn't there [03:46]
• Preschool [04:22]
• Elementary School [05:12]
• The good times - Fifth Grade through middle school [06:13]
• The challenges of High School [06:42]
• Going back to the vision [08:59]
• West Chester University [09:46]
• Dignity of Risk [10:45]
• What's Next [13:13]
• What I've learned along the way [14:45]
• Working in a theater [17:09]
• Our vision for ourselves [20:22]
• Enjoying my daughter [22:23]
• Some resources to share [27:03]
• Closing [32:11]

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Subtitle: Expectations

Recording Date: June 1, 2022

Transcript: Download transcript HERE

Keywords: disability, siblings with disabilities, disabled siblings, expectations, family dynamics and disability, disability and family balance, disability and support options, letting go, changing roles, Sibshops, sibling support, Suzanne Muench

Summary: Gerry interviews Suzanne Muench, whose brother John has a disability. Listen to a poignant conversation as Suzanne shares balancing expectations with reality, changing roles and her journey towards self-care. Suzanne shares her struggles navigating the change of roles from sibling, to caregiver, and back again.

Topical Index:

• Overview [00:00]
• Introductions [01:23]
• Choosing what to share [03:11]
• Importance of family balance [04:14]
• Defining my career [05:19]
• Lack of conversation [07:01]
• Shifting roles from sibling to caregiver [09:19]
• Finding the right supports [10:26]
• Reclaiming the role of sibling [11:24]
• Personal struggles and self-care [13:34]
• Balancing the needs of care-giver and family [17:57]
• What I wish I knew [18:10]
• Conversations vs. expectations [19:22]
• Empowering Families [20:30]
• Acknowledging successes [23:51]
• Letting go of control [25:03]
• A positive change for all [26:44]
• Sibshops - supporting the sibling's journey [29:55]
• Some resources to share [32:16]
• What's next for Susanne and John [37:07]
• Closing [39:11]

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Subtitle: Having the Tough Conversations

Recording Date: April 29, 2022

Transcript: Download transcript HERE

Keywords: Estate planning, special needs trust, difficult conversations, caregiver, caregiving, independent living, birth of a child with a disability, special education, The Parents' Exchange,

Summary: Gerry interviews Ruth Landsman, executive director of Parents' Exchange, and advocacy group for parents of children with disabilities. Ruth shares her journey from learning of Mitchell's disabilities, to her conscious planning for a future for Mitchell without her. Ruth shares the exploration of difficult conversations, and the importance of having those conversations earlier rather than later.

Topical Index:

• Overview [00:00]
• Introductions [02:18]
• Pregnancy and birth [02:45]
• The changing vision [03:47]
• Connecting with other parents [05:55]
• Transition [07:43]
• Continuity of housing and supports [10:07]
• What happens when I am gone [12:30]
• Preparing a letter of intent [15:17]
• Starting the shift of support now [16:36]
• Financial planning [17:57]
• Mitchell's apartment [19:23]
• Regret of missed milestones [24:27]
• We have moved [25:56]
• Have the conversation / Ask the questions [27:32]
• Plan now for the future [29:19]
• Closing [31:48]

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Recording Date: Aprili 22, 2022

Transcript: Download transcript HERE

Keywords: PATH, Person Centered Planning, vision board, IEP, transition, transition planning, support system, caregiver, shared visions, parallel paths, Diane Perry

Summary: Diane Perry shares with Gerry the various tools she has found helpful in creating a vision for her son David's future, but also for her own. Join us as we travel the Parallel Paths of David and Diane Perry.

Topical Index:

• Overview [00:00]
• Introductions [01:25]
• Choosing a topic [02:20]
• The vision of an active life [03:24]
• Sharing the vision [05:16]
• A Tax-Paying Citizen [07:36]
• David takes over the vision [09:06]
• Fears and concerns [10:37]
• Diane's Path [11:33]
• Pitfalls and celebrations [15:31]
• A Strong support system [17:46]
• What I Wish I Knew [21:09]
• The Dark Places [23:02]
• Graduation Day - The Vision is Real [27:22]
• The importance of the tools [31:16]
• What's next [32:53]
• Closing [34:39]

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Recording Date: March 24, 2022

Keywords: disability, transition, future planning, adults with disabilities, independence, planning, dignity of risk, finding balance in our families, caregiving, family life

Summary: Welcome to Our Parallel Paths - A Future for My Loved One With a Disability... And Me! On Our Parallel Paths, we'll talk about creating a promising future for the child with an intellectual disability who becomes an adult and a promising future for ourselves as our role as parent, family member, caregiver. Whoever we are evolves alongside them. There's more than one path, more than one future to talk about. And that's why we're here. Some remarkable people will share their stories in upcoming episodes. I'll be listening with you, and I'll have some questions for our guests too.

Transcript: Download Transcript Here

Topical List:

• Introductions [00:00]
• Overview [01:26]
• About Gerry [02:43]
• Plans change [04:26]
• Dignity of Risk [08:16]
• Striking a Balance [09:20]
• Gerry Interview... Gerry! [10:21]
• Closing [19:13]

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