Tuesday, September 18, 2012

Assistive Technology on Your Due Date

by Christina Mills, CFILC's Deputy Director

I’ve been questioning whether it was premature of me to write my first AT Blog post about my daughter’s accessible crib. After I wrote that posting I sat back and developed a list of other AT baby-related topics that I wanted to cover, and when I did I realized that maybe I should have talked about the Assistive Technology I wish I had had for the delivery and my four-day hospital stay.

Those who know me know that I’m usually well organized and big on planning ahead. I actually do like some surprises, but some people might question that. I wrote up a detailed birthing plan and shared it with all of my doctors well in advance, but what I didn’t think about was all the inaccessible hospital equipment that would make it difficult and nearly impossible for me to fully relax and enjoy the first few days with my daughter.

For all of you soon-to-be or hopeful parents with disabilities—take a tour of the delivery room, nursery and overnight patient rooms before your due date. During your tour think about the height of the baby bathing area in the nursery, will you be able to participate in giving your baby his/her first bath? Will you be able to reach your baby when she’s lying in her bed in the nursery? When the baby is brought into your room will you be able to get her in and out of the bassinet? I had difficulty with all of these things and since my husband is also a person with a disability (short stature) it wasn’t easy for him either.

We bring our own AT (foot stool) to our daughter's doctor appointments
We were thankful that we had a private room to stay in, but I wish I would have known that the restroom in that room wasn’t wheelchair accessible. Needless to say, if I did it again I would give more attention to my physical access and assistive technology needs. I would have asked for a room with an accessible restroom, brought in my own lowered bassinet and I would have asked the hospital for a portable bathtub on a lowered table to bath my daughter. California law requires that all babies be put through a car seat test before discharging from the hospital. In order to pass the car seat test a baby must be able to sit up and be strapped down correctly for a specified amount of time. When a baby doesn’t pass the car seat test they are required to go home in a car bed. Some hospitals have car beds that they can lend out, but in my experience the hospital was out of car beds and didn’t know where to go to get one. We called around town for one, but with no success. Fortunately we were able to recline our car seat and use it, but it would be helpful to have car beds available through the Device Lending Libraries. Especially in communities where there are no specialty hospitals for children.

In my experience as a new parent I haven’t had a great deal of time to reflect on things I would do differently, but contributing to the AT Network Blog has given me this time. It’s interesting; I work in disability rights and I have done lots of advocacy around accessible healthcare but, until now, I never thought much about it as a parent with a disability. I was so used to talking about the lack of accessible scales, examining tables, mammogram machines, large print, etc. I never gave any thought to the needs of parents with disabilities and the lack of access or AT that they could be encountering. And, of course, it isn’t just about the delivery or a hospital stay. It’s also about all those post birth and “wellness” checkups and possible emergency visits or stays in the hospital after your baby is born.

We’ve become accustomed to bringing our own AT to the wellness checkups because the scales for babies are bolted to tables that are well above my head and also out of my husband’s reach. Therefore we bring a folding lightweight stool to all of our daughter’s medical appointments. In fact, we usually just leave that handy stool in the trunk of our car. Some might be asking why we don’t ask the doctor or nurse to transfer our daughter on and off the scale. If we requested that accommodation they would probably do it, but given our daughter's disability we would rather do it ourselves. Besides, we’re her parents and these are the types of choices we’ve made as empowered parents with disabilities.


1 comment:

  1. Thank you for all of the tips, especially about the car beds.

    ReplyDelete