I am a Parent of a Child with Special Needs
You are a parent and either caring for a young child or an adult child with special or complex physical or mental health needs.
Podcast Episodes
Caring for an Adult Son
Lisa Nigro describes herself as an ordinary woman with an extraordinary spirit. Before becoming a full-time caregiver in 2015, she was a community activist serving the poor, and undervalued living in Chicago. Currently, she is the full-time caregiver of her adult son, Nick, who on October 31, 2015, suffered a heart attack at home from a virus and became brain injured and fully disabled. Lisa shares how she is thriving in this new season of life, even with its difficulties and challenges. In this episode we discuss the parallels of Lisa working with the homeless and caring for Nick, how being non-verbal doesn’t mean non-communicative, the challenges in finding quality respite care, gratitude pumpkins, pizza gardens, and more!
Helping Your Disabled Child Transition to Adulthood
Kim Albrecht knows what the sandwich generation feels like. She has been her 18-year-old daughter’s primary caregiver since Miranda was born and she helps care for her mom who is living with dementia. Kim is a southerner transplanted to California via the Midwest along with her husband and 2 teenage daughters, the oldest of which has level 3 nonspeaking autism. Kim hosts the award winning LOMAH Disability Podcast, where over 150 expert guests have been interviewed on topics relevant to planning the future for teens and young adults with disabilities. In this episode, we talk about how Kim and her husband are preparing Miranda for adulthood and living independently from her parents, Kim’s gratitude for some tough feedback from trusted individuals that shaped her current caregiving mindset, how she recovered from caregiver burnout, and why every caregiver may need to purchase some construction worker headphones.
Coping with the Guilt
Meet family caregiver Adrienne Provost. Adrienne lives in Chicago and is a mother of three children. Her youngest, Caroline, has a rare genetic disorder called Epidermolysis Bullosa, commonly referred to as ‘EB’. In this inspirational episode, we learn more about EB and how this family works together as a team. We also learn about Caroline’s Make a Wish event and the rare disease advocacy work that Adrienne does with Harmony 4 Hope.
- Overcoming Limiting Beliefs – Debbie Weiss
- Caring for Child with Complex Medical Needs – Brenda Blais Nesbitt
- When the Parent also Needs Care – Michelle Seitzer
- Self-forgiveness and respite – Heather Zoccali
- Caring for Mom & Daughter – Ann Campenella
Articles
From Our Gift Shop
Other Resources
- We Are Brave Together Community for caregiving moms
- Respite and health retreats from A Mother’s Rest
- Find disability community resources in your county
- Spellers – Documentary sharing ideas for people caring for nonspeakers with autism
- Best Buddies offers 1:1 friendships, integrated workforce, inclusive living, and a mentorship program.
- Caregiver Anthem Spotify Playlist
- Libby App to listen to free audiobooks from the library
- Yoga4Caregivers offers online virtual yoga and meditation sessions
- Caregiver Chronicles – a fellow Whole Care Network podcast featuring parents raising two boys living with autism.
- Painted Turtle -nonprofit year-round camp for children with serious medical conditions
- Undiagnosed Diseases Network Foundation – enhance the quality of life for undiagnosed and ultra-rare diseases
- Center for Parent Information and Resources