Thankful Thursday

Today, this first day of 2009, I am thankful...

• that 2008 came and went without Ashley spending even one night in a hospital! That's huge!


• that Lisa, Ashley's birthmother, and I are communicating pretty regularly, and hopefully will meet sometime this year


• That I finally found the exact kind of mortar and pestle I need for crushing Ashley's medicine


• that I have been able to keep my job during all the state budget cuts and layoffs


• that the Christmas cookies are finally all gone


• that Ashley's latest MRI revealed no further growth of her brain tumors


• that my baby boy, Chip, is growing up and becoming quite the responsible adult


• that Rocky has finally settled into life with our family and his separation anxiety has subsided


• for all the time I got to spend with my family this Christmas break. I haven't ever been able to take 2 weeks off from work - until this year, that is.


• for the huge smile on Ashley's face as she hand fed a zebra at the zoo (and thanks to Amy for the great Zebra picture!)

Special Exposure Wednesday

Last weekend we visited the National Zoo in Washington, DC, and as I wrote earlier, the trip could have been better. We decided to try another zoo - one closer to home - on Tuesday, and the experience was wonderful! I'll blog later about the differences between the two zoos and why one was better than the other, but for today, here are some of the pictures we took at the Metro Richmond Zoo. And yes, we actually were that close to the animals!




Ashley is feeding a giraffe!


And a zebra!

Make sure to check out all the other great Special Exposure Wednesday photos at 5 Minutes For Special Needs!

Going Postal

My daughter, Jessica, is 18 years old, and should be starting to find a job. Jessica is significantly cognitively impaired, but I strongly believe that there is a job that she can do and can do well. She has always said she wanted to be a nurse's aide, and I want to support her in reaching those dreams. And even if she doesn't realize that exact dream, she needs to find her place in the adult world. It's going to be really tough though given her outbursts of rage and aggression.

For years, 11 to be exact, Jessica has struggled with Reactive Attachment Disorder, a condition common in adopted children and which manifests with outbursts of aggression. Because of her significant cognitive challenges, traditional talk therapy has not been an option. All her doctors and I have been able to do in an attempt to control the aggression is to medicate her. I hate it, but she cannot be allowed to hurt herself or other people.

I had hoped that once the surge of puberty hormones subsided, her aggressive behavior would also. But the opposite has happened - she has gotten increasingly more aggressive, and as she has grown, that aggression has the potential to be very dangerous.

When Jessica is not being aggressive, she is the sweetest, kindest person you might ever meet. But when the moments of rage strike, and those moments are not predictable, everyone around her is in danger. So I wonder, how will Jessica be able to maintain a job when she can't maintain control of her anger?

Her school system, her case manager, other support staff and I have been working very hard to make sure she has the skills to do a job she would enjoy doing. But we are all at a loss as to how to help Jessica overcome her rage and aggression to the point that an employer would be comfortable hiring her.

Have any of you faced a similar situation, and if so, do you have any advice to share? I sure could use some...

How Do You Zoo?

Dear Washington National Zoo;



My children and I were so excited about our visit yesterday. I had checked out your website to make sure the park was accessible, and you said that it was. You specifically mentioned that ALL exhibits were wheelchair accessible, and that all the bathrooms were handicapped accessible. Imagine my surprise when we arrived and I discovered that you had lied.

Three of your parking lots had handicapped parking, so you said. It’s true that you had three parking spaces in each of those lots that had the big blue wheelchair guy painted on the ground. But, there were no lanes next to the parking spaces. Fortunately, I didn’t have a van equipped with a wheelchair lift, because if I had, I would not have been able to get my daughter out of our van. Needless to say, I wasn’t real happy to pay the $20 parking fee.

You did warn on your website that the grounds of the zoo were in hilly Rock Creek Park. You weren’t kidding. Fortunately, I had two strong teenaged sons to push Ashley’s wheelchair. I’m not sure I could have done it myself.

One of the first things I noticed was that most of the exhibits were not quite as accessible as you indicated. I understand that we couldn’t get very close to the wild animals, but none of your informational signs had either Braille or raised lettering. Nor was there any sort of audio system available for a person who might be blind or visually impaired, as my daughter is.

Most of the doors leading to the indoor exhibits were not equipped with an automatic opener. Again, I had my sons to help with the doors, but if I was alone and in a wheelchair, I could not have gotten into most of the indoor exhibits.

And let’s talk about the so-called handicapped accessible bathrooms. I visited the two main bathrooms on Olmstead Walk. Both facilities had lots of stalls – probably close to 30 or 40 – but only one of them was marked as handicapped accessible. I guess you didn’t anticipate that more than one person in a wheelchair would need to use the bathroom at any given time. But even worse, the one stall marked as handicapped accessible in both bathrooms was unusable. Both toilets were stopped up, and the floors of both were covered in filthy water. We were in the park for over three hours, and the two handicapped accessible stalls stayed that way the entire time. I can’t begin to find the words to describe how difficult it was for my daughter to use the restroom.

Things were no better in the one indoor restaurant you provided. It was hard to swallow that it cost $45 for 4 hotdogs, 4 orders of fries, and 4 drinks, but even harder to swallow was the fact that I couldn’t get my daughter’s wheelchair down the aisles to a table. There was no room.

Washington National Zoo, I am so very disappointed in you. And I’m angry – angry that you use my tax dollars yet my daughter can’t use your facilities. I read your ten year strategic plan that is posted on your website, and there is no mention whatsoever in that plan of accessibility. How, as a government entity, do you get away with that?

We won’t be back...

Doctor Etiquette

Ashley and I have been in a lot of doctor's offices recently. I try to schedule as many of our appointments as possible during school breaks, and it seems I am doing a good job with this Winter Break! Between the two of us, we have visited or will visit the hospital MRI department, the rheumatologist, the neurosurgeon, the pediatrician, the gynecologist, and the gastroenterologist.

Some of our visits will be a lot better than the others, but not because of the particular malady that brings us to the office. Rather, the success of the visit will be determined by the doctor and his manners.

I haven't heard many folks talk about the importance of good manners in a doctor. So, I was thrilled to find the following article earlier this month in the NY Times. After reading it, let me know what you think. Is it important to you that your doctor practice good manners, or is his/her skill alone what helps you decide whether a doctor is "good"?

The Six Habits of Highly Respectful Physicians

Merry Christmas To All

A Christmas Prayer
by Robert Louis Stevenson

Loving Father,
Help us remember the birth of Jesus,
that we may share in the song of the angels,
the gladness of the shepherds,
and worship of the wise men.

Close the door of hate
and open the door of love all over the world.
Let kindness come with every gift
and good desires with every greeting.
Deliver us from evil by the blessing
which Christ brings,
and teach us to be merry with clear hearts.

May the Christmas morning
make us happy to be thy children,
and Christmas evening bring us to our beds
with grateful thoughts,
forgiving and forgiven,
for Jesus' sake.

Amen.

Special Exposure Wednesday

So, what do you do when you have an appointment with your neurosurgeon on Christmas Eve Eve, and everything is moving at a snail's pace? You find things in the doctor's exam room to amuse yourself, such as blowing up the exam gloves, getting you friend, Amy, to use the little hammer thing to check your elbow reflexes, putting on sunglasses and gazing at the overhead lights. pulling a scarf off Amy's head, and pretending to be a little birdy while Miss Amy feeds you.