Three months ago today, a man died. His name is Robert Ethan Saylor (“Ethan”) and he died over a movie ticket. After watching a movie along with his personal care assistant (PCA), he remained inside the building while his PCA went to get the car. Mr. Saylor went back inside the theater to watch another […]
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Rowenna Update
Just a quick photo post in between all the school stuff and the post I’ll be putting up on Friday about the tragic death of Robert Ethan Saylor. Lest you think my life is all doom and gloom and thinking deep thoughts about disability issues, here’s what Rowenna has been up to her while her […]
Chapter 3: The IEP
We have an IEP for Rowenna. I’ve written this post about 5 times, each looking at this from a different angle, each sounding a bit bitter about the whole process and inspiring me to try again for a more pleasant report. I’ve given up on trying to spout sunbeams about the IEP (feeling like perhaps […]
Chapter Two: In Which Rowenna Has an Evaluation
Last week, Rowenna had her formal evaluation with the local school district. This evaluation will determine whether or not she qualifies for special education services. There are a few possible outcomes in our district. Children can qualify for “full time” schooling (4 days a week, about 2.5 hours each day), part time schooling (2 days […]
Retard
Today is Spread the Word to End the Word Day. I haven’t yet blogged about this word: retard. I’ve been gathering my thoughts for nearly three years, and this is all I want to say: I’m tired of people defending their use of the word. I’m tired of people thinking it’s ok. And I’m past […]
Chapter 1: In Which the School District Meets Us
Disability World is full of transitions. Most of them are somewhat artificial – they are driven by funding streams and federal laws rather than a specific need. Rowenna is quickly approaching one of these transitions. Right now she is in the Birth to Three program. This is exactly what it sounds like – she started […]
What Makes it Hard
I’ve written before about how raising a child with Down syndrome doesn’t require strength, it requires stamina. There are things about our life that are a challenge. Now, a lot of people would follow that up with “but everyone has challenges so it’s all ok!!!” There is a tendency to soften the blow, to fear […]
Therapy, Ableism, and Why We Do What We Do
Rowenna has started a period of transition and I’ve been thinking quite a bit about the choices we’ve made for her so far and the choices we will need to make in the next few months. As part of my thought process, I’ve been having discussions with other moms in the Down syndrome community. We […]
Broken
I’ve lost another baby. I was due June 3, two days after Rowenna’s third birthday. The pregnancy had been relatively uneventful. I had some morning sickness and some pretty intense fatigue, but I was grateful to be spared the hyperemesis gravidarum I had with Rowenna and I was starting to make plans for a big […]
My Heart
Sometimes I wonder if I’m rubbing off on Rowenna at all. She is so much her daddy’s girl. I see it all the time – a certain gleam in her eye, her ability to problem solve, her mellow, laid-back personality. Given a choice, she’ll happily sit with her dad. She is definitely not one of […]
