Magazine article The Exceptional Parent

A Well Lit Pathway

Magazine article The Exceptional Parent

A Well Lit Pathway

Article excerpt

When I brought home my baby boy over 15 years ago, I had no intentions of remodeling my home. It was simple to carry the swaddled baby in and out of the car, and put him into the pack 'n play or crib. Like all parents, we adjusted. You know: safety locks for the cabinets (all except the one for the pots and pans,) covers for electrical sockets within the reach of the not-yet-toddler, and mood lighting to ensure a peaceful night's sleep. As a new mom ... what did I know?

But, very shortly after birth, I knew that my journey would be different. Not only did that baby boy, but my next as well, come with a rare metabolic disorder, he added to my life new levels of parenting that I would stumble upon and need to address.

One of them was adaptive equipment foot and wrist braces, Hoyer lifts and slings, feeding pumps, oxygen equipment, and wheelchairs and ramps. Dare I mention the wheelchairs brought along another desperate need: the need for repairs!

As both boys grew, the difficulty in bringing them to and from the car and up and down the stairs was apparent. My neck, back and knees all sung the very same tune. "Help!"

Where do you turn when your abode is in such need of repair and remodeling?

For starters, make sure to contact your local family support agencies. It is not always easy to find the right fit with the first call, so keep trying. Second, hang on to a handy-man. If you have a brother, or in-law, or friend in the contracting, carpentry or electrical business, keep their numbers handy. Get to know your local home improvement companies and be sure to keep your receipts! Our remodeling started with a backdoor-to-driveway ramp. My boys, both using wheelchairs, were 80 pounds by the second grade. No longer could we continue to carry them to the car, or successfully lift them in and out of the car seat. We did, but not without chronic pain. We were desperate for a ramp!

Here are some pointers: make sure the wood for your ramp is outdoor treated lumber. Be sure the posts are 4 x 4, and be sure the grade of the ramp is dictated by a professional who should know that the elevation is 1:12. Know about the joists, hand rails, hanger nails and footings. Be sure to have laborers who know how to do this job. You do not want to get this wrong. (For free guidelines see http://www. rcrv. org/WRAP/rampguidelines.pdf) If building an attachment is not in your plan there are many types of steel adjustable ramps, or "lift" style elevated ones.

Now, let's go inside.

Our hallway walls were infused with scratches and holes and no longer would plaster patching suffice. Wainscoat (bead-board) became my best friend. Wider doorways and flexible door-closing hinges were an asset. Push-button codes for entrance way locks (instead of lock & key) along with flexible door handles were needed. The dexterity and the disability of the individual will determine which type of handles and locks work best.

Once in the hallway and through the door, if you are graced with a doorway large enough, the first place you go--is to the bathroom! Install a higher toilet seat and grab bars. Remodel to make a wheelchair accessible shower or install grab bars here too. Please don't think that a towel bar will work. It won't. (Ouch! Just more repairs!)

I can only describe the benefits of the ceiling lift or chair lift, (our home does not have these yet) but I have worked with families who have them. …

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