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:

1. Autumn knows about life with and without a child with a disability, and she shares how life was like Hermione.
2. Autumn explains the difference between controlled and uncontrolled seizures. She also shares about the percentage of survival.
3. 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

https://autumnkaren.com

purpleday.org

This podcast uses the following third-party services for analysis:

Podcorn - https://podcorn.com/privacy
Chartable - https://chartable.com/privacy