Special Guest Autumn Karen: Epilepsy Awareness - Hermione's Story
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.
- 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.
This podcast uses the following third-party services for analysis:
Podcorn - https://podcorn.com/privacy
Chartable - https://chartable.com/privacy