Tracy’s guest on this episode is Clarinda Ross, mom of three and accomplished actress, writer, and special needs advocate. Clarinda began her journey as a patient advocate thirty-three years ago when her daughter Clara was found to have developmental delays, the experience of which she channeled into her one-woman show Spit Like A Big Girl. Clarinda begins the episode discussing her experience parenting a child with special needs and navigating the healthcare system two years before the Disabilities Act was signed into law. She describes how the challenges of getting the right care for Clara forced her to develop real gumption in ensuring that her daughter could live her best life, including letting her go when the time was right. She also discusses how forming an advocacy team, including speech and occupational therapists, helped ensure Clara’s needs were understood by the school and healthcare systems.

Next, Clarinda talks about Spit Like A Big Girl, how it developed from her experiences in childhood and parenting Clara, and the impact it’s had, particularly in making healthcare professionals rethink their approach to special needs patients and their families. In particular, she discusses the tendency for special needs diagnoses to be framed as death sentences and argues that while your child may have a different life than you imagined, it can still be one filled with joy. Tracy then asks Clarinda to talk about how she’s extended the skills she’s gained as an advocate for Clara into advocacy for other family members, including her mother and husband. Clarinda explains that while the healthcare system is improving in terms of listening to patients and sharing records, it’s still wise to take a trusted person with you when meeting with healthcare professionals to have someone who can take down all the details and back you up when necessary. And finally, Clarinda closes the show by sharing a little about how Clara’s doing today, at age thirty-three, settled in a group home, and living her best and most independent life.

Highlights:

• Becoming a parent to a child with special needs
• How Clarinda ensures she and Clara live their best lives
• Learning to let go when your child has special needs
• The impact of Spit Like A Big Girl
• Becoming a patient advocate for other family members

Quotes:

“Somewhere around two, when I got some really definitive tests saying that the gaps were not going to close all the way, and this was going to be a lifelong care situation, I did not sit down. I did not, you know, cry. I thought, okay, well then what can I do to give her the best life? How can I do that? And I just… I just pushed on.”

“I came out the stage door, and there was an older man waiting there for me. And he was a doctor, and he just had tears in his eyes. And he said, ‘You made me think. You made me think about the way that I talk to mothers.’ He was a pediatrician there in the town, and I said, ‘Well, good. Yay! I’ve had a great day’s work.’”

“This play is a love letter to occupational therapists. I have a whole section in there that I call ‘the Church of Occupational Therapy.’ I used to be a Methodist, but now I am devoted to the Church of Occupational Therapy because it works.”

“It doesn’t have to be a death sentence. What it has to be is… it might not be the life that you thought your child was going to have and the relationship that you were going to have with this child, but it can be full of joy.”

“If it’s not like that, if it’s not you’re in a life-threatening situation, and especially if they are wanting to operate on you, take a minute before you do anything invasive. And ask questions, and get that person to come and sit with you, and get that other opinion, and another opinion.”

Show Links:

LitHealth Homepage

Clarinda's Homepage

Spit Like a Big Girl