Tag Archives | Down syndrome

Open Letter to NDSS and NDSC

I read that you are seeking information from the community about the proposed law enforcement training program you plan to help implement. As mother to a child with Down syndrome, I would like to share my thoughts. It seems your support of a training program is a foregone conclusion. Since you feel you must support […]

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Another Post with a Strong Opinion

SPOILERS. If you have not seen the Glee episode “Shooting Star” and do not want details, please do not read further. * * On Thursday, April 11, Glee aired an episode called “Shooting Star.” The Down syndrome community appears to be in an uproar about it because Becky (the character with Down syndrome) played a […]

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Uncomfortable Truths

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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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