Friday, May 8, 2015

Get Well Scott

It would be ironically funny: graduate school is supposed to give ulcers to the students. Instead it was Scott--a violent bleeding ulcer one week before the end of classes. After a few days in the hospital and a couple of transfusions (thank you blood donors everywhere!), he's finally back home to heal. In a few days I might even be ready to do normal things like a cook a dinner or wash some laundry. Maybe I'll even finish that one last paper at some point.

Thank you so much to our wonderful community, members of which have provided rides, meals, and countless hours of childcare at a moment's notice. We really are so very lucky, after all.


Monday, April 27, 2015

Bowling for CF

Heading into that busiest time of year--
There are papers to write and birthdays to celebrate and so very many graduations to be proud of. Recitals and performances and lots and lots of applause.

But we're never too busy to do a little something to help our friends. 

Here a few select pictures from our afternoon bowling to raise funds for the Cystic Fibrosis Foundation. One of Rain's classmates has a little brother with CF. Hazel and Rain were asking about it, horrified by my explanation of what CF does in the body. They said they were grateful that Rain has Duchenne instead. I told them that the families with CF say the same thing about us. Compassion all around--everybody's got something. The least we can do is be moved for one another. And when I told the kids that some drugs are in development which might help both groups-- those with CF and those with Duchenne-- my kids were struck with awe. And conviction.




We were really impressed by the accessibility efforts made by our local bowling alley. They had a combination of permanent and portable ramps to get a person into the lanes and seating areas. They provided these accommodations without comment or fuss, merely upon seeing Rain roll up in his wheelchair. And they had these nifty little ball ramp contraptions. As long as somebody could lift the bowling ball for Rain, he was able to aim the ball ramp himself and played extremely well.

We had a great time. There's nothing more satisfying than knowing you are doing something that helps a friend while having a whole lot of fun together.

Monday, April 13, 2015

Signs of Spring

Every now and then I allow myself to briefly look up from my books and papers to notice a few signs of spring. Here's one:


I've got four more weeks of intense work at school. Then, finally, summer. Ah, I can hardly wait.

Friday, March 27, 2015

Housing: Resources

Many reader questions are about housing, a problem for anyone who lives in a "standard-style" house or apartment and finds that their mobility does not work well with common architectural features like narrow doorways, cramped bathrooms, and copious stairs. Along with my other posts labeled 'housing' (access them in the listing to the right of your screen or by searching the keyword 'housing'), here are some further resources for your consideration.

UNIVERSAL DESIGN = FULL ACCESSIBILITY = GOOD DESIGN FOR ALL PEOPLE



Informational Websites


UniversalDesign.com

AccessibleSpace.org




Accessible Home Improvement of America




Video Tour




Real Estate and Rental Listings



Thursday, March 26, 2015

Housing: Power

Many reader questions are about housing, a problem for anyone who lives in a "standard-style" house or apartment and finds that their mobility does not work well with common architectural features like narrow doorways, cramped bathrooms, and copious stairs. Along with my other posts labeled 'housing' (access them in the listing to the right of your screen or by searching the keyword 'housing'), here are some pictures of ways we have tried to solve architectural problems at our house.

Electricity


Massive Solar Array: Electricity and Hot Water

We live in a semi-rural location where power outages are to be expected from time to time. Even though most life-saving machines that run on electricity have battery backups included by the manufacturer as a safety feature, we all have heard sad stories of how a power outage has caused a death through the failure of a breathing machine overnight. So we wanted to make sure that we had a backup source of energy for times when our municipal electricity fails. There are many things that families can do.

Instead of a gasoline-powered generator, which requires a person to manually turn it on during a power outage, we decided to go for relatively maintenance-free solar electricity. Our photovoltaic cells on the roof face south and are angled close to maximum efficiency for out latitude. They feed into a battery system in the attic which should afford us three days worth of electricity to certain marked outlets in our house. 

Red Outlets are Connected to the Battery Backup System

We made sure that battery-backup outlets are near the bed, both in Rain's childhood room (pictured) and in the master bedroom which he will move into when he is all grown up. The refrigerator is also on a battery-backup outlet. 

The solar-powered battery system engages automatically, night or day, whenever the municipal power goes out. There should never be a time when we cannot run a respirator, keep our medications at the right temperature, and fully charge a power-wheelchair battery.


Hot Water

Our climate here is quite chilly with snow in the winter but with plenty of sunshine nonetheless. We decided to heat our house with solar hot water through radiant flooring. It is very comfortable and efficient as a heating system and because we generate most of the heat ourselves it is quite affordable for us. We have a backup system in place here as well for extended cloudy stretches when our solar hot water is insufficient to our needs: tankless water heaters which run on natural gas. These are a bit of an upfront investment but because they only turn on when we need them and they do not store heated water, they are very efficient.

Backup Tankless Water Heaters

And since it is just as easy to install a hot water radiant heating system under a slab of cement outdoors as it is to put one under a floor in a house, we went ahead and splurged to add automatic heating under our driveway and front walk. A sensor in the driveway turns the heat on when temperature and wetness thresholds are met. Instant snow-melting means never having to shovel. Clear pathways equal accessibility in an emergency.

Wednesday, March 25, 2015

Housing: Bathrooms


Many reader questions are about housing, a problem for anyone who lives in a "standard-style" house or apartment and finds that their mobility does not work well with common architectural features like narrow doorways, cramped bathrooms, and copious stairs. Along with my other posts labeled 'housing' (access them in the listing to the right of your screen or by searching the keyword 'housing'), here are some pictures of ways we have tried to solve architectural problems at our house.

Master Bathroom

It's surprising how much time a person spends in the bathroom-- we figured we should make it the kind of room we want to spend time in. We put in a standard sink and vanity and a pretty spiffy soaking tub, neither of which is especially accessible. When our son inherits the house as his own and moves into the master suite, we will replace the vanity with an accessible version.

For accessibility now and in the future, we made sure to include three things:

1. Plenty of space to move around. The rule of thumb is at least a 5 foot (1.5 m) turning radius.

2. A flexible, open, roll-in shower with a hand-held shower head and a built-in seat. The shower pan is flush with the bathroom floor and both are tiled with less-slippery natural slate tiles. Because we opted not to fully enclose the shower, we made sure to tile the walls of the bathroom as well as the official shower area and floor. The open design allows for plenty of room for any equipment and helpers who might be involved in successful and pleasant showering.

3. A toilet with plenty of room around it to accommodate a rolling shower/commode chair and/or human helpers. This is a very "Duchenne" design as it does not include grab bars. We expect that our son's muscles are likely to weaken at approximately equal rates all over his body. By the time he needs help to sit down and stand up, he probably will not have the arm, shoulder, and trunk strength to make effective use of grab bars. Some families disagree with us and prefer to work with a more typical accessibility model that includes grab bars.

Master Bathroom

Roll-In Shower

Kids' Bathroom

Our kids share a bathroom, located off the main hallway that connects all of the bedrooms. Behind it's sliding barn door-- 36 inch (92 cm) wide opening, flush threshold-- the bathroom is comfortable for several people to do several things at the same time. The sinks and vanity are 31 inches (79 cm) high, so a step stool is part of the picture for now, which Rain manages very well at this age. When he needs a roll-up sink for accessibility purposes, we will have to remodel a bit. We estimated that we might get up to ten years of use out of the current configuration, all told. We'll see.

Making it Easy for Small People

Shared Space
Because the kids were quite small when we moved in, and because Rain still prefers a bath rather than a shower, we decided to install a regular bathtub. We opted for a curved tub, which provides a little bit more wiggle room for a bigger kid, while still allowing a grown-up helper to easily reach into the tub.

Curved Tub for Bigger Kid Bodies

We also paid attention to details like how the faucets operate. This style allows the operator to adjust temperature and pressure using one lever-style handle. No difficult twisting motion required.

Easy to Use Faucet Handle

Tuesday, March 24, 2015

Housing: Kitchen and Common Areas

Many reader questions are about housing, a problem for anyone who lives in a "standard-style" house or apartment and finds that their mobility does not work well with common architectural features like narrow doorways, cramped bathrooms, and copious stairs. Along with my other posts labeled 'housing' (access them in the listing to the right of your screen or by searching the keyword 'housing'), here are some pictures of ways we have tried to solve architectural problems at our house.

Kitchen

In many ways, our kitchen is not at all special, just large. Since we were building with accessibility for our son in mind, we did not need to adjust the heights on cabinets or countertops. (Neither of the adult cooks in this household is seated.) What we did add was plenty of room to get around and standard five-foot (1.5m) turning radiuses at the sink, the fridge, and the stove/oven. We put dishes in a lower cupboard instead of an upper one, so that they can be reached easily. 

Plenty of Room to Get Around



Family Living Areas

We designed with a fairly open floorplan, thinking about making rolling around the house easy. Our bedrooms are clustered together and each has a transom window above the door so that communicating in an emergency is easy (we'll hear each other) but privacy is maintained with regular doors. It's a good compromise for us.

Remember that standard swing-opening door 36 inch (92 cm) wide yields a 33-34 inch (83-86 cm) functional opening. We also made use of sliding barn doors on the bathroom and laundry room. For this type of door, a 42 inch (107 cm) door yields a 36 inch (92 cm) functional opening. We decided not to install locks or latches on these doors-- no handles or latches to get hung up on-- just slide the door closed and you're done. No locks means that no one can accidentally lock him or herself in where help can't reach them.


Wide Open Spaces and Generous Doorways

We opted for fairly traditional furnishings and rugs which can be moved or eliminated as our needs change over time. When we have a full-time powerchair in the house, we will remove the rugs. I've seen some very clever folks who have painted their floors to resemble area rugs-- all of the look, none of the hassle of getting caught in your wheels.

Flexible Living Room