michaeldthomas: (Default)
I just saw this on [livejournal.com profile] haddayr's journal.

michaeldthomas: (Default)
Last night's City of DeKalb Advisory Commission on Disabilities meeting depressed me a bit. We talked about future initiatives and came to the conclusion that the recession killed our agenda. Most our mission involves helping the city become more accessible to people with disabilities. Almost everything we could suggest takes money and time. With probable looming city government lay-offs, we decided that now was not the time to press for improvements.

*sigh*

Other than prepping for Odd Con, things are pretty dull around here. I'm almost done with a draft of a new short story. My brain should also be in a good enough place that I can start revising the last story next week. I also finished a draft of a section of some new nonfiction work (my sekrit project). I hope that my collaborators like it.

I'm watching the Cubs/Brewers game. This is not going to be a pretty season.

On a happier note, today is the 11th anniversary of the first time [livejournal.com profile] rarelylynne and I kissed.:-)
michaeldthomas: (Caitlin 2)
I wanted to say hello to all of my new friends and readers post-WisCon. Since you decided to subject yourselves to my blathering, I should probably give you a fuller introduction of myself. Along with being a Doctor Who nonfiction writer, aspiring SF novelist, and husband to the hottest Rare Book Librarian in the world, I am the full-time caregiver to my medically complicated, special needs daughter.

Caitlin is an amazing five-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 do some sitting and assisted standing, she can communicate with sign language and her device, and she is at age in cognitive abilities (she knows her colors, letters, numbers, and some written words).

I work with her and coordinate all of her life. This includes work with doctors, teachers, nutritionists, therapists, insurance companies, and medical suppliers. I am also a volunteer for many organizations that deal with people with chronic medical conditions and disabilities. That’s about the gist of what I do.

Caitlin had a good weekend away from us. My family worked as a team to watch her while we were at WisCon. She even got to go to the zoo. We really appreciate all that they do for us.

This is a bittersweet week for the family. Caitlin is almost done with the Early Childhood program at school. Her last day is Monday. She starts kindergarten in the fall. Next week is the big IEP meeting to determine her placement and services at school. It looks like it’s going to be a smooth meeting. Caitlin will be placed in a special program for most of the day, and included in the regular kindergarten class for the rest. As far as I know, she should still be getting all of her school therapies at the same levels. IEPs are always a little tense, so hopefully this one will be uneventful.

In sadder news, one of Caitlin’s playmates from summer school passed away. My heart breaks for the family. It’s a shared fear that we live with everyday. There was a nice article in the local newspaper about how Caitlin’s new school dealt with his passing.
michaeldthomas: (Caitlin 2)
Caregiver Edition.

1- There was lots of Aicardi Conference Planning silliness this week. It was the pretty typical committee breakdowns with miscommunications and misunderstandings. I am fairly aggravated by things at the moment. It will be sorted out in the end, but at the moment it’s just more fodder for me leaving the “organization” after the conference.

2- The City of DeKalb Advisory Commission on Disabilities meeting went well. It looks like the mayor is reappointing me for another two years. We have some great plans for the future. The only crazy thing from this meeting was the commission having to deal with an individual who is going around town pretending to be a member. It wouldn’t be so bad if this individual wasn’t aggressively confronting business owners and landlords and threatening them with his nonexistent power to levy fines. We are tackling this the way every commission tackles issues; we are issuing a strongly worded letter.

3- Caitlin had a good, healthy week. We were even able to go out and walk in Downtown DeKalb thanks to some good weather. We are getting a Tapas restaurant there, which is kind of cool. It was a nice walk, but it is frustrating that a good number of businesses aren’t even remotely ADA compliant.

4- Caitlin’s transition planning has started. Next fall she will be in Kindergarten at a new school. Change frightens me.

5- Caitlin’s OT is also leaving the Elgin Easter Seals. This really sucks. We like her a lot, and she’s been with Cait for years.
michaeldthomas: (Default)
Real life has been rough for the last two days. Yesterday was our yearly run to the Pediatric Ophthalmologist. Caitlin was in a good mood and behaved for all of the testing. Nothing in her eyes has degenerated any further. Caitlin was also able to show the doctor how well she is using her vision. Considering that the girl has damaged retinas and optic nerves, she’s taking in quite a bit.

We then went to see my grandmother at the hospital. Things are very bad. It was extremely difficult seeing her in that condition. This is not the first time that I’ve been there for a loved one’s end of life, but it’s always a stomach punch. She still recognized me, but she’s otherwise fairly unresponsive. My grandmother is a shell of the magnificent woman that helped raise me.

After that we rushed home and picked up [livejournal.com profile] rarelylynne. I then went to The City of DeKalb Advisory Commission on Disabilities meeting. It seems that the commission will survive the current city budget crisis.

Today I was digging myself out of Aicardi Syndrome Family Conference business. I think that I wrote about 30 emails today. At least everything with it seems fine so far.
michaeldthomas: (YANA)
I am getting a bit overextended.

I found out last night that the Aicardi Syndrome Family Conference got more complicated again. I’m stressing out trying to come up with a solution.

Here are my current commitments:
Co-chair of the 2008 Aicardi Syndrome Family Conference
Co-chair DeKalb County Local Interagency Networking Council (LINC)
Member City of DeKalb Advisory Commission on Disabilities (a job that’s growing)
Member of an Easter Seals Committee
The Disability Commission’s representative on The Access to Recreation Committee

I do all of this while being Caitlin’s caregiver, coordinating her school, therapies, doctors, and insurance issues.

Oh, and I’m co writing a guidebook for Mad Norwegian Press.

And I’m writing a novel.

Somewhere in there I also clean the house, do laundry, and try to have time with my wife.

I’m beginning to think that I need to start saying no to things.
michaeldthomas: (Caitlin)
I’ve been handling some more sensitive stuff recently for Caitlin, and it’s been extremely stressful. Even when you are in the right, the system is set up to save money, not to necessarily help people. Luckily, I have the support of RAMP for this headache. As most of you remember from Caitlin’s fundraising Grand Marshall gig a few weeks ago, RAMP is an advocacy agency for people with disabilities. They have been a lifesaver. It seems that I have finally stood my ground, and Caitlin will get what she needs to thrive. I just wish that people didn’t actively work against families like mine when we have so many normal difficulties to conquer each day.

Otherwise, Caitlin has been doing well. She is weaned off of Topamax and is on only one anti-epileptic for the first time since she was 3 months old. Unfortunately, it’s the expensive Vigabatrin that is approved everywhere else the world except the US. Everything seems to be working, though, with the current Vigabtrin/Ketogenic Diet/no-nap combination. During the summer, Caitlin was up to two strong spasms a day that lasted up to seven minutes each with the occasional blockbuster that went over 10 minutes until Diastat was administered. As of today, Caitlin has been seizure free since October 26. We’ll take it.

This has made her much more aware and with it. Caitlin had an awesome day at school doing very well with her vision therapy and physical therapy. She really is starting to stand for longer periods of time with minimal assistance. We’re so proud of her.

Things seem to also be going well with her and her little boyfriend. He and his mother have been arriving at school at the same time as us. The last two mornings he has insisted on holding her hand as I wheel her into class. This makes for a happy Caitlin. There is nothing quite like five-year-old love.

Last night I had my City of DeKalb Advisory Commission on Disabilities meeting. It went very well. We have finally started the process of networking with the similar committees at Northern Illinois University. It was great to share information and plant the seeds for future projects. The town/gown divide is ridiculous. This way we will combine our resources and ideas to hopefully make the community as a whole better for all of the people with disabilities. The only downside is that I think that I increased my workload again. Just call me Ado Annie....

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michaeldthomas

August 2011

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