Category Archive


8 tips for coming to terms with “bad” genetic testing results

At 16 weeks pregnant, I had a (fairly) routine blood test done. Two days later, my midwife called and said that based on the results, the baby I was carrying had an elevated risk of having Down’s syndrome. We scheduled a sonogram with fetal and maternal health specialists and a genetic counselor for two days later. Nothing was found, but they asked us to come back a month later because they were having difficulty getting good images of the baby’s heart. We leave happy that our risk has been downgraded, and come back a month later.

Does my special needs daughter really eat lunch alone every day?

It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler’s lunch and were trying to change things up a little. We wanted to get her some new drinks but were unsure if she would be able to open the bottles. Schuyler’s polymicrogyria has some big features and some small ones, and one of its less frightening but still annoying impairments involves her fine motor skills. We asked her if she thought she would be able to open the bottle. She said she thought so, but still seemed a little unsure.

How can we explain his brother’s autism to our four-year-old son?

My stepson, A, is 11 and autistic, and my younger son, M, is four. M has just started to question why A isn’t “like his friend’s big brother.” When M asked “Why won’t A play with me? Does he not like me?” it struck us that we really didn’t know how to explain autism in a way that a four-year-old would understand.

Broken Phantoms: understanding visually identifiable and invisible disabilities

If there is any one particularly great experiential divide in the vast disability community, it may be that between the visually identifiable and the invisible disabilities. It’s the difference between a world of unwanted pity, and one of unwanted judgment.

Collaborative photography with my autistic five-year-old

Lately, the line in my photography and Remy’s is blurring just a teeny tiny bit. (No, I am still not letting him shoot with my DSLR. It just weighs too much and would be too expensive to replace if he dropped it.) Remy has moved on from the Canon point-and-shoot I was letting him use when there were fresh batteries to be found. He has also discovered a love of the iPod camera, just as I have.

Warning: a super cute redhead is in the vicinity

Nashville-based photog Kristin Sweeting hooked us up with a set of super cute toddler photos to swoon over.

A photo essay about a girl and her chair

Michelle’s step-daughter has a disability and spends most of her time in a wheelchair. This is a photo essay about Snail’s chair.

What I learned from my daughter’s helmet

When our daughter, Ruby (the most beautiful baby in the whole world) was about 4 months old I noticed something wasn’t quite right.