The Sick Bed

The thought of Ashley having a seizure in the middle of night really frightens me. I worry I won’t hear her – in fact, if the seizure is one of her typical ones, I know I wouldn’t hear her. And when she is sick, the probability of seizures increase, and the seizures themselves can be life-threatening.

Until recently, I have had a small loveseat in her bedroom, and when she was sick, I would sleep, or try to sleep, on that loveseat. The reality was I didn’t sleep but I was at least comforted in the knowledge that I would know if something happened to Ashley. But that loveseat wasn’t a good solution because I needed some sleep to be able to care for her during the day. So, I’m trying something different now.

I had a spare twin bed and mattress and this weekend I set it up in my bedroom. I by no means have a large bedroom. In fact, my house is pretty old, and was built in an era when house space was relegated to the living room and dining room not but bedrooms. So, I now have my queen bed, the twin bed, two large old dressers and a nightstand all jammed into my bedroom. Even though I have to walk sideways to move around the room, I feel so much better knowing that Ashley can sleep on the twin bed and I can have my bed in the event that she is sick.

How do you handle a similar situation? Have you made special arrangements for the times that your child is sick? Or for those of you who have children who are medically fragile, how do you monitor your child on a night to night basis?

Ramp Care

I need some advice from those of you who have wheelchair ramps.

My ramp is built out of decking material - pressure treated wood. When it gets wet or cold and wet, or just covered in dew, it gets very slippery. Is there something I can put on it that would help?

And how do you handle snow and lots of it? Do you just shovel the ramp like you would a driveway, or do you put a tarp down before it snows, or something else that would make the job of clearing the ramp quicker and easier?

If things work out and Johnny gets to join our family, using the ramp will be a necessity and something we will not be able to do without. So, I guess I just need advice on the care and upkeep of our ramp.

Can you help?

Is Bribery Wrong If It Works?

From the first day Ashley started school almost 12 years ago, she has loved riding the bus. She almost skips out to the bus each morning, and is reluctant to get off each afternoon.

And that reluctance is currently a problem.

The bus ride from high school to home is very short. Ashley is used to longer bus rides, and is somewhat miffed at the short ride. So her strategy is to not get up out of her seat and get off the bus. Maybe she’s hoping no one will notice.

Understandably, the bus drivers get a little impatient with her. They have a schedule to keep, and I know the parents of the other children on the bus will worry if the bus is late. So, since asking Ashley nicely to get off the bus and then using the ‘mom voice’ to demand she get off the bus wasn’t working, I had to come up with another strategy. Enter the ‘Bus Bribe Box’.



I had the idea that perhaps Ashley could be lured (bribed) to stand up and get off the bus if an interesting object, an object I thought she would really like, was dangled in front of her. It has worked like a charm!

So each afternoon, Miss Amy (Ashley’s intervener) selects an object from the “Bus Bribe Box" and heads to meet Ashley’s bus. Whether it is the object itself or just that it is something ‘new’, it doesn’t matter. It is working and working well!

There is a time and a place for bribery!

Today I am thankful for Ashley's new wheelchair. Thank you adoption agency for subsidizing her new 'ride'!