Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures.
In this conversation, Candace and Shawn share these challenges and solutions they’ve discovered in the course of his 8 years of life. Candace shares her journey in finding Miller’s diagnosis at almost 2 years old whilst going through a divorce from his bio-dad, and Shawn’s experience in entering their lives and being totally and completely accepting of Miller and his differences.
We also talk about the prospect of curing Angelman syndrome, their choice to call Miller “disabled” instead of “special needs”, and the isolation that comes with having a child that has differences and challenges that few understand.
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Mini-doc about Miller and family: https://www.youtube.com/watch?v=9iQLAHobfAU
Donate to FAST, and help fund a cure here: https://cureangelman.org/
Learn more about resources for children with Angelman here: https://www.angelman.org/
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For images, comments, the full transcript and more, visit the website: https://therarelifepodcast.com/
TRANSCRIPT:
Shawn  0:00
"And then as soon as you say chromosomes, they're like Oh, so like Down syndrome. And I'm like No."
Madeline Cheney  0:08
Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Now that we are into September, we have a new question of the month. This question of the month is a little more complex. It is: What is your favorite toy/tool/supply for (fill in the blank). This could be for dwarfism, hearing loss, vision loss, autism, low muscle tone, trachs, etc, etc, etc. So when you go to fill out the question, there will be a field that you can fill in to tell us what category your favorite tool, toy, or supply is for. And so I think it'll be really great for us to be able to share what we have learned as far as things that have been helpful. And this will be also a great thing for us to go to, I think, for birthday ideas and Christmas ideas, I'm really excited to see what you guys say. So head over to the website, therarelifepodcast.com both to answer September's question of the month and to look through the answers from last month. This is Episode 14: The story of Miller. This is our first ever episode with both parents in the interview, and I really loved it. It was great to have both perspectives and I'm hoping to be able to have that be more of the norm now so that this truly can be a podcast for both parents of children with rare conditions. Today we have Candace and Shawn talking about their son Miller. They talk about the challenges that come with having an eight year old with Angelman syndrome, like navigating non-verbalism, sleep issues, and seizures. They also talk about the prospect of a cure for Angelman syndrome, and what that would mean for them and Miller. Candace also shares about receiving Miller's diagnosis when he was almost two years old and while she was going through a divorce. Candace and Shawn have five children between them, Miller being the youngest. Shawn teaches English as a second language and he also has a background in film....