Here's Caitlin and Her Papa!
Jun. 1st, 2009 05:48 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
michaeldthomasI want to say hi to all of my new friends. ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
stillnotbored just reminded me that I should probably tell you all a bit about my daughter, Caitlin.
Caitlin is an amazing six-year-old girl with a wicked sense of humor and a great deal of love for the world around her. Caitlin has an extremely rare congenital condition called Aicardi syndrome. The syndrome is characterized by brain malformations (ACC), eye malformations (retinal lacunae), and severe epilepsy (infantile spasms). Caitlin has major physical delays and communication problems. She is also a silent aspirator who is unable to eat or drink by mouth (she has a feeding tube that goes directly into her stomach). Caitlin by the standards of the disorder has thrived. She can sit for an hour, stand with assistance, and communicate with sign language, choice cards, and her device. Caitlin is at age in cognitive abilities and can read at a second-grade level.
I am her full-time caregiver. I coordinate school, doctors, insurance, and therapies. I also do a lot of local volunteer work with different agencies that help people with disabilities. When Caitlin is at school, I'm a writer and associate editor for Mad Norwegian Press, a small press that specializes in cult television guidebooks. I am currently co-writing Fluid Links: The Unauthorized Guide to Doctor Who Novels and Audios. When I'm not working on that project, I write SF short stories and novels.
stillnotbored just reminded me that I should probably tell you all a bit about my daughter, Caitlin.Caitlin is an amazing six-year-old girl with a wicked sense of humor and a great deal of love for the world around her. Caitlin has an extremely rare congenital condition called Aicardi syndrome. The syndrome is characterized by brain malformations (ACC), eye malformations (retinal lacunae), and severe epilepsy (infantile spasms). Caitlin has major physical delays and communication problems. She is also a silent aspirator who is unable to eat or drink by mouth (she has a feeding tube that goes directly into her stomach). Caitlin by the standards of the disorder has thrived. She can sit for an hour, stand with assistance, and communicate with sign language, choice cards, and her device. Caitlin is at age in cognitive abilities and can read at a second-grade level.
I am her full-time caregiver. I coordinate school, doctors, insurance, and therapies. I also do a lot of local volunteer work with different agencies that help people with disabilities. When Caitlin is at school, I'm a writer and associate editor for Mad Norwegian Press, a small press that specializes in cult television guidebooks. I am currently co-writing Fluid Links: The Unauthorized Guide to Doctor Who Novels and Audios. When I'm not working on that project, I write SF short stories and novels.
