Jay talks with Autumn Karen on a challenging subject – A rare chromosome disorder of her daughter Hermione. Sadly, they lost her at the age of 3.5 years, but those years were blessed with loved and empathy.
Episode Highlights:
• 03:01: Autumn narrates about her tragedy. She states that at first, all looked good, but there was a slight clue that something was wrong which the doctors were not able to put a pin.
• 05:18: There are markers for normal or commonly known syndromes or congenital disabilities, but everything was new and unheard of in Hermione’s case. She had plastic surgery at the age of 3 months.
• 06:29: Interestingly, during the same time, Autumn was doing a psychological dissertation on the topic “How families are told about diagnosis.”
• 07:00: Jay empathizes and supports Autumn saying that it might have been confusing and challenging as a nail already hits you in the head.
• 07:28: At the hospital when Autumn was informed of her daughter’s condition. The doctor coldly asks her to google it.
• 07:40: Jay and Eric discuss how some people don’t understand or communicate with you about your pain during tough times. Eric shares a personal experience about how he felt when doctors don’t show any empathy.
• 09:54: Jay points out mental health crisis is not just for the parents or children; doctors also deal with the same situation. There should be an awareness about the same.
• 13:23: Hermione had a 10% chance of survival when she was born. Autumn discusses the privileges that they got from the government and family members.
• 14:54: Eric puts an important question “What are the options available to those people who don’t have such kind of privileges?”
• 16:58: Jay stresses that the issue should be addressed so that, privileged or not, no child should be left out to get proper care and service.
• 17:56: Autumn shares about Hermione’s seizures; at times, they were for 2 hours.
• 19.24: Autumn confesses that before this tragic incident, she had no idea about Sudden Unexpected Death in Epilepsy (SUDEP).
• 22:30: Autumn takes the listeners to an emotional ride when she narrates Hermione’s last moments.
• 25:01: Jay respected the fact that Autumn did not put Hermione under heavy medication but instead tried her best to give her a normal childhood.
• 28:27: Eric talks about his personal experience with epilepsy and how he jokes about it.
• 32:18: Autumn jokes about how her other two kids took things lightly and made seizure faces.
• 35:20: To help parents who have special needs children, Autumn points out that it is essential to talk about it. There is nothing to be afraid of about it.
• 37:24: Funding is also missing for special needs child welfare.
• 48:00: Eric and Jay discuss that “The importance of discussing how it feels to go back to the house post a tragic loss. This discussion is something that has to happen.”
• 49:32: Jay talks about the importance of meditation.
• 53:57: Family with special needs child tends to isolate from the society, it is important to invite them and make them feel welcome.
• 55:15: Jay asks, “Do you think society is becoming more understanding towards special needs children?”
• 58.31: Jay and Eric motivate Autumn and appreciates that she talks about Hermione. They acknowledge that she is making a change.
• 59:55: Jay points out that the entire situation is more about miscommunication; hence it is crucial to talk about it.
• 01:01:06: Autumns stresses that she is not ashamed to talk about Hermione or her disability.
3 Key Points:
• Autumn knows about life with and without a child with a disability, and she shares how life was like Hermione.
• Autumn explains the difference between controlled and uncontrolled seizures. She also shares about the percentage of survival.
• Autumn shares the challenges she faced as a single mom of 3 kids and how society, friends, family, or neighbors can help take the pressure off.
Resources Mentioned:
www.c22c.org | https://www.purpleday.org/ C22C Video
