Wednesday, December 31, 2008

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!)

Tuesday, December 30, 2008

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!

Monday, December 29, 2008

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...

Sunday, December 28, 2008

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...

Friday, December 26, 2008

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

Thursday, December 25, 2008

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.


Tuesday, December 23, 2008

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.

Monday, December 22, 2008

Very Effective Self-Advocacy

Much of the outrage and conversation that surrounded the release of the movie Tropic Thunder has died down. I expect that with the current release of the movie on DVD that conversations will once again surface.

I found the following video of a young woman affiliated with the ARC of Virginia. The ARC of Virginia advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. The young woman in the video is a self-advocate, and a darn fine one.

Sunday, December 21, 2008

Christmas With The Sesame Street Gang

One of Ashley's Christmas presents this year was going to the Sesame Street Live show at our Coliseum. She went two years ago and really, really enjoyed it, so today's trip was much anticipated by Ashley and I and Amy, Ashley's aide. But, our excitement was slightly dampened when we arrived at the Coliseum.

Although there was plenty of handicapped parking in the parking deck across the street from the Coliseum, there was no ramp or safe access from the parking deck to the facility. Amy and I had to push Ashley in her wheelchair up the entrance ramp to the deck. And then we had to travel a bit in the street just to reach the curb cut.

When we entered the Coliseum, a helpful worker directed us to the elevator which would take us to the floor level seats. I wanted Ashley to be as close to the stage as possible given her significant vision impairment, but when I ordered the tickets through TicketMaster, there was no way for me to request accessibility. I just hoped for the best.

Unfortunately, when we arrived on the floor level, the barrier around the seats had several openings to walk through, but a wheelchair couldn't be pushed through because there was a curb height barrier. The Coliseum workers tried to be helpful and said they would lift Ashley's chair over the barrier. But, as I mentioned before, Ashley doesn't like strangers touching her chair. So, Amy and I got Ashley to stand and step over the barrier, and then we lifted her chair over. Needless to say, I wasn't real pleased about this.

Then we found our seats. There were several rows back from the stage, and in the middle of the long row. I mentioned to another worker that we would need one of the chairs moved so Ashley could sit in her wheelchair. The worker said she couldn't do that. At that point, I was getting real annoyed, and Amy was even more annoyed. But, to the credit of the worker and the facility, they moved quickly to make things right.

After some back and forth conversations on walkie talkies, three manager-types showed up, told us they had another set of three seats for us, and that Ashley's chair would fit nicely on the end of the row. The seats were actually better than our original ones. The manager-types also told the worker to let them know when the show was almost over and they would set up a ramp to get Ashley's wheelchair over the barrier at the entrance. And finally, the worker stopped back by and said, "I think the characters will be stopping by to see Ashley!"

So, Ashley thoroughly enjoyed her Christmas gift as evidenced by the photos below!

Friday, December 19, 2008

Student in Time Out Commits Suicide

Does your school district use ‘time-out’ with your special needs child? Do you know how your school district defines ‘time-out’? Read this story from, and I bet you will start asking questions. I know I will.

Children Forced Into Cell-Like School Seclusion Rooms

Thursday, December 18, 2008

Thankful Thursday

Bet you thought I forgot my list of thanks today, eh? I admit it has been a very busy day, and I am just now getting to my blog. Ashley had an MRI under anesthesia today. We do this every 3-6 months to monitor the three brain tumors that were identified 18 months ago.

When Ashley was an infant, she had two separate surgeries to remove brain tumors. But for many years, the tumors stopped being an issue. Then about 18 months ago when her seizures peaked at 5-6 a day, her doctors searched for a reason. The first MRI they ordered revealed that Ashley has three more tumors. But since they are not growing, and the doctors are divided on whether or not they are causing seizures, I have chosen the prudent path of just watching them.

Today was one of those days of watching. So, today I am thankful...

  • that we were able to find a very close handicapped parking spot in front of the hospital. That's a very good thing on a cold, windy day.

  • for the quick and easy registration process in the MRI department.

  • that Ashley did not need Versed, a drug to calm her anxiety, before the procedure. But she just barely didn't need it. I was just moments away from asking for it when they took her back. I don't like the Versed because it makes waking her from the anesthesia very, very difficult.

  • for the lovely recovery room nurse who through her actions acknowledged that 'Mom Knows Best', and let me handle Ashley's discharge the way I wanted.

  • that my son, Chip, took the day off from school to help me at the hospital. With my rheumatoid arthritis transferring from wheelchair to gurney and back can be a daunting task, and Ashley doesn't like strangers stepping in to help

Along with the things for which I am thankful, today there were several things for which I was not thankful...

  • the MRI staff who insisted we come for the appointment at 10am, and then didn't take Ashley back until 11:15

  • and again, for the MRI staff who couldn't send Ashley to recovery immediately following her procedure because the recovery room was full - but most especially because they didn't tell me what was going on and made me wait two and half hours, worrying myself sick every minute.

  • and finally, for the fact that the MRI staff did not have the images on CD ready for me to take from the hospital. Ashley's neurosurgeon insists I get a copy the day of the procedure. I asked several times while we were waiting, and again in the recovery room. With a drowsy and cranky Ashley wanting desperately to leave the hospital and go home, they told me I would have to wait another 30 minutes for the CD. I told them they could mail it to me.

So, the good news is we are done for another 6 months (hopefully). The bad news, besides the negative experiences at the hospital, is that I must wait until next week to hear from the neurosurgeon letting me know what the MRI revealed.

Think good thoughts for Ashley, please...

Wednesday, December 17, 2008

Special Exposure Wednesday

The best Christmas ever for a diehard Colts fan!

Be sure to check out all the great Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, December 16, 2008

Because I'm The Mom

I swear the woman in this video must be parenting teenagers. Else, she has been living in my attic for the last 5 years!

A special thanks to DeafMom for finding the captioned version of this video!

Monday, December 15, 2008

How Is Your Box Labeled?

I know teachers have tough jobs. I know they are often overworked, and that it is difficult to give each child individual attention. But like it or not, in the world of special education, individual attention is dictated by the IEP. And to me, that individual attention means thinking outside the box when you have a student receiving special education services, especially a child with complex disabilities.

For example, just because a child has decent expressive communication skills, it doesn’t mean that child’s receptive skills are equally as good. My oldest daughter is a perfect example of that. She has learned what her doctors term ‘cocktail party conversation’. She can appear to carry on a conversation with anyone – because she has learned to imitate the cadence and flow of conversation between people in a group. She does not, however, have much of a clue what the conversation is about or what her responses really mean. She gives the impression of understanding, but if quizzed, obviously does not understand. I believe a good teacher would notice that immediately. However, most of her teachers have not.

I had a conversation with another parent this weekend on that same subject. Her son is hearing impaired and has a cochlear implant. His expressive communication is adequate but his receptive is sorely lacking. So what did his most recent school hearing evaluation say? Not much, because he was labeled as ‘bad’, not concentrating on the task at hand. I believe a good teacher would have realized that receptive communication might be the issue.

Ashley is another student that often baffles her teachers. Because Ashley sometimes gives the impression of hearing spoken language, teachers believe they can always speak and she will understand. However, if she is quizzed on what was spoken, nine times out of ten, she did not hear correctly. For example – she confuses words that same similar – pig and big – key and me – you and blue. Her hearing impairment is so significant that she cannot rely on speech, and her teachers need to realize that. Most of the time they don’t.

In the second grade, Ashley’s teacher said she was a visual and auditory learner. Ashley is deafblind. In this current school year, 8th grade, the teacher made the statement that she can communicate just fine verbally with Ashley. Maybe the teacher can speak just fine to Ashley, but Ashley is not hearing her.

This box that surrounds our children with disabilities is more often than not the reason for discord between parents and the school system. If we could all think outside the box – if teachers could take the time to understand the whole child – if administrators could give teachers the support and time they need – I really believe there would be fewer problems.

But if our school districts continue to place our children in boxes, disputes will continue, and our children will be the ultimate losers.

Friday, December 12, 2008

Holiday Month - Christmas Day (An Update)

I wrote a post last year titled "Holiday Month - Christmas Day" in which I talked about shifting the way we celebrate Christmas. Being very tired of all the commercialism associated with Christmas, and even more so this year when times are difficult for almost everyone, I wanted to shift my family’s focus to the spiritual celebrations. In last year's post, I wrote about how I was going to accomplish that.

So this year, we are now half way through Holiday Month, and we are all looking forward to Christmas Day. The house was decorated right after Thanksgiving. Several gifts have already been exchanged. We've made cookies. We are hosting a party tomorrow. Soon we will travel the city to look at all the lights. Family members will be joining us on Christmas Eve and Christmas Day. And we will reserve Christmas Day for its true purpose.

While the new approach I suggested last year would be harder to implement for families of young children, for my teenager-full family, it's working and working well.

I hope your holidays are going well - happy and as stress-free as possible. If not, bake a batch of chocolate chip cookies and eat them all!

Thursday, December 11, 2008

Thankful Thursday

Today I am thankful...

  • that I have a nice warm office and a nice warm house to stay in during today's torrential rains. I'm sad that I don't know where homeless people go at times like this.

  • for warm chocolate chip cookies fresh out of the oven

  • that there is only one more week of school for the kids and work for me until Winter Break

  • that I will get to see a lot of my Dreamcatcher families at this Saturday's Holiday Party

  • that my son, Chip, has completed and submitted two of his three college applications

  • for lawyers who respond within an hour when I have concerns about Ashley's educational program (or lack thereof)

  • for a 16 year old son who remembers all his chores and does them willingly. Well, at least I would be thankful for that if it actually happened!

  • for home health companies who deliver supplies when they say they will deliver

  • that I have a boss that lets me work from home occasionally. It was especially helpful last week when Amy wasn't working and I had to meet Ashley's bus in the afternoon.

  • that if I want to, I can go home after work and get right into my pajamas

Wednesday, December 10, 2008

Special Exposure Wednesday

As TiffandIvy pointed out over at 5 Minutes For Special Needs, Special Exposure Wednesday, there is magic to be found every day. One of Ashley's most magical moments was receiving 4, yes 4, Casey the Kinderbots on Christmas morning last year!

(I had been searching for the cheeky little Casey all year, and discovered that he was no longer made. So, I took my search to Ebay. I kept bidding and losing each time I would find a Casey. I had the great idea that if I bid on four of them, maybe I would get one. As you can see, I won all four bids!)

Tuesday, December 9, 2008

Read My Hands

At the start of the second week of school this school year, I filed a complaint with my state department of education alleging that my school district was not providing the sign language support listed in Ashley’s IEP. Letters flew back and forth between the school district, me and the state department, and the result? The school district was found to be in noncompliance. In other words, they agreed with me.

So, the state department of education directed all parties to have a meeting, play nicely, and talk about compensatory services for the times that appropriate services were not delivered. The school district interpreted that to mean compensatory services only up until the complaint was originally filed – which to them meant 4 hours.

Of course, since that time, the school district has failed to provide the services for at least three hours each week, and just two weeks ago, they missed a week and a half total.

The school district contends that they have provided the services because the classroom assistant, who is a fluent signer, has been assigned to assist Ashley. My concerns arise when that person is not available (those times I listed above). The school district says they continue to provide the support even then. Obviously we disagree.

So where does this leave Ashley and her IEP? Well, Ashley’s teacher says she can communicate sufficiently with Ashley through verbal means. Ashley is profoundly deaf in her right ear and has a severe loss in her left. I believe the teacher is mistaken.

The substitute aides the school system says they provide (which I’m not sure is always the case), know little or no sign language – maybe signs like yes, no, help, hurt, if that, but definitely not enough to ensure Ashley receives appropriate academic instruction.

So here we are almost half way through the school year, and Ashley has not received the services listed in her IEP the entire time. My next plan of action includes asking for the sign language qualifications of the teacher and the substitute aides and filing another complaint with the state department of education. That will probably waste most of the rest of this school year. Ultimately, I believe we are headed for due process again.

It really, really does not have to be this difficult.

Monday, December 8, 2008

Bribery or Justifiable Incentive?

My son who is a senior in high school told me something interesting yesterday. He said that for the past year, one of the high schools in our county has been paying students $100 for each AP (Advanced Placement) exam they take if they receive a higher-than-average grade. And, the teachers in the AP classes get $100 per student if the student gets the good grade. That means some of the teachers could make up to $3000 per class (and most teach multiple classes).

My son said that the program has been such a success that it is going to be extended to all county high schools (9 of them). He said that he was told part of the money to fund the program comes from Exxon Mobil Corporation and some from the county’s education budget.

Something about this bothers me, though I am unable to put that into words yet. I do know that all state and local budgets are being cut, and I wonder what else might be cut so this payment program can continue. What do you think? Do other school districts do this type of thing?

Friday, December 5, 2008

Building Great Cathedrals

Monica, one of the best moms in the world to one of the most beautiful little girls in the world sent me the article below. I loved it and know you will also.

The Invisible Mother ......

It all began to make sense, the blank stares, the lack of response,
the way one of the kids will walk into the room while I'm on the
phone and ask to be taken to the store. Inside I'm thinking, 'Can't
you see I'm on the phone?' Obviously, not.

No one can see that I'm on the phone, or cooking, or vacuuming the
floor, or even standing on my head in the corner, because no one can
see me at all. I'm invisible. The Invisible Mom. Some days I am
only a pair of hands, nothing more: Can you fix this? Can you tie
this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a
clock to ask, 'What time is it?' I'm a satellite guide to
answer, 'What number is the Disney Channel?' I'm a car to
order, 'Can you pick me up at 5:30?'

One night, a group of us were having dinner, celebrating the return
of a friend from England. Janice had just gotten back from a fabulous
trip, and she was going on and on about the hotel she stayed in. I
was sitting there, looking around at the others all put together so
well. It was hard not to compare and feel sorry for myself. I was
feeling pretty pathetic when Janice turned to me with a beautifully
wrapped package, and said, 'I brought you this.'

It was a book on the great cathedrals of Europe.

I wasn't exactly sure why she'd given it to me until I read her

'To Charlotte , with admiration for the greatness of what you are
building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would
discover what would become for me, 4 life-changing truths, after
which I could pattern my work:

1. No one can say who built the great cathedrals - we have no record
of their names.

2. These builders gave their whole lives for a work they would never
see finished.

3. They made great sacrifices and expected no credit.

4. The passion of their building was fueled by their faith that the
eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit
the cathedral while it was being built, and he saw a workman carving
a tiny bird on the inside of a beam. He was puzzled and asked the
man, 'Why are you spending so much time carving that bird into a beam
that will be covered by the roof? No one will ever see it.' And the
workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was
almost as if I heard God whispering to me, 'I see you, Charlotte. I
see the sacrifices you make every day, even when no one around you
does. No act of kindness you've done, no sequin you've sewn on, no
cupcake you've baked, is too small for me to notice and smile about.
You are building a great cathedral, but you can't see right now what
it will become.'

At times, my invisibility feels like an affliction. But it is not a
disease that is erasing my life.

It is the cure for the disease of my own self-centeredness. It is
the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder.
As one of the people who show up at a job that they will never see
finished, to work on something that their name will never be on.

The writer of the book went so far as to say that no cathedrals could
ever be built in our lifetime because there are so few people willing
to sacrifice to that degree.

When I really think about it, I don't want my daughter to tell the
friend she's bringing home from college for Thanksgiving, 'My Mom
gets up at 4 in the morning and bakes homemade pies, and then she
hand bastes a turkey for three hours and presses all the linens for
the table.' That would mean I'd built a shrine or a monument to
myself. I just want her to want to come home. And then, if there is
anything more to say to her friend, to add, 'You're gonna love it

As mothers, we are building great cathedrals. We cannot see if we're
doing it right.

And one day, it is very possible that the world will marvel, not only
at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible women.

Thursday, December 4, 2008

Thankful Thursday

Today I am thankful…

  • For the wonderful days I spent with my children over the Thanksgiving holidays. In the hustle and bustle of the school year, there just never seems to be enough quality time. We made up for that last week.

  • That so far it still looks like I will be able to take vacation from work for the Christmas holidays

  • That the turkey and trimmings are finally finished. They were great, but I was getting tired of leftovers.

  • For the way my house looks dressed in all its Christmas finery

  • That Rocky dog is finally starting to mellow out a little bit. The phenobarbitol the vet prescribed is really helping.

  • For strangers who smile while shopping in very crowded stores

  • For big, fluffy snowflakes – the kind that can easily be caught on your tongue

  • For the great visit we enjoyed last weekend with my brother and niece

  • For a comfy couch, a warm throw, and a mug of hot cocoa with marshmallows on a cold winter night

  • For the new TV show, Secret Millionaire which debuted last night. It’s another one of those feel good shows like Extreme Makeover Home Edition, but I think we need more feel good shows on TV. I would much rather see a wealthy person share $50,000 with a family burdened by hospital bills for their young daughter with cancer than fake, but still very realistic looking, autopsies on shows such as CSI.

Wednesday, December 3, 2008

Special Exposure Wednesday - Rocky Elf

From Rocky..."OK, I get it. This family likes to dress up their animals. Remember my Halloween costume? Well, here's my Christmas elf hat. Why can't they get something a little more masculine - maybe a spike studded collar or something? I guess it's worth it though, because I also got a really soft and fluffy Christmas bed (which you can sort of see in the picture)."

I'm not sure why, but there was not a Special Exposure Wednesday post at 5 Minutes For Special Needs today. I'll update this post if one does appear.

Tuesday, December 2, 2008

All Shoppers Welcome? Doesn't Seem So.

Even though I knew shopping on Black Friday would be difficult for Ashley in her wheelchair, I thought it would be because of the crowds of people. However, it wasn’t the crowds (the sagging economy seems to have played a major role in keeping folks from shopping), it was the stores themselves that made the task more than a little difficult.

At Circuit City, our first stop, getting into the store was a piece of cake – nice wide wheelchair ramps, an associate standing at the door to open it for us, and an entry area that easily accommodated both wheelchairs and lots of people. But things changed as we tried to make our way through the store. The aisles at Circuit City are wide making wheelchair travel easy except on days when extra kiosks of products are placed right in the middle of the aisles. Having worked in retail many moons ago, I know the point of the intrusive kiosks is to attract attention of shoppers. What it meant for Ashley was that she couldn’t go down the aisle unless I moved the kiosk out of the way. Some I could move, and some I couldn’t. Overall, our experience in this store was not terrible. We were able to find and procure everything we wanted with just a little bit of inconvenience.

Our second stop was World Market. The shopping experience there was much, much worse than Circuit City. First, the curb cut designed to allow wheelchair access to the store had a large, square brick post right in front of it on the sidewalk. There was no way for a chair to go up the ramp and do anything but hit the post. Since I had my two sons with me, we were able to lift Ashley’s chair over the curb. Inside the store was not much better. Again, there were kiosks blocking most aisles, and the aisles themselves were so packed full of merchandise that there was no way a wheelchair could safely maneuver. I waited at the front of the store and sent my sons in search of the two items I wanted.

Best Buy was a lot like Circuit City but with more people. Target was the most accessible store with wide aisles unobstructed with extra merchandise. The associates at Target were also very helpful and willing to provide whatever assistance might be needed. And, their bathroom was the most handicapped accessible.

Finally, we went to Petco and 5 and Below. Petco wasn’t too bad, just laid out in a really strange way. We had to keep Ashley’s chair on the tile aisles and away from the carpeted areas, and getting to the cash register was not easy either. 5 and Below, as I expected, was almost as difficult as World Market. Lots and lots of merchandise were stacked in the store and the aisles, even without the extra merchandise, would have been very difficult to maneuver. But, one of the strangest things was that the cash register and attendant were on a raised platform. I was able to reach them, but had Ashley or anyone else in a wheelchair been trying to pay, I don’t believe the would have been able to reach the cashier. The staff at this store, seemingly seasonal high schoolers, was not the least bit helpful or accommodating.

These are tough economic times our nation is facing. I would think that stores would want to make sure anyone that wanted to shop would be able to shop. Rather, some stores like World Market and 5 and Below, are excluding 5% of the population just because no one has paid attention to details.

Monday, December 1, 2008

Retail Therapy

Black Friday - the quintessential day of olympic shopping. I haven't ventured out on this day of bargains and germy crowds since my now 18 year old son was just a toddler. I hired a sitter and hit the stores to find great deals on toys and other gifts, but I haven't tried it again since adopting Ashley almost 12 years ago.

Black Friday shopping is not for the faint of heart. I was worried that with Ashley's deafblindness, she would be easily over stimulated by the crowds. And with her tentative health, I worried that exposing her to such a large germ pool would be disastrous. But I changed my mind this year.

The lure of shopping is just as great for Ashley as it is for any other teenaged girl. So, we left home early, jockeyed for parking spaces, and joined the masses of people searching for bargains.

First, we went to Circuit City. This store was to be my litmus test since it is usually one of the most crowded on Black Friday. If Ashley could handle shopping there, she would probably be ok at the mall or other large stores. She did great! She never once got over stimulated, or if she did, she managed it very well. Buoyed by her smiles, we went on to World Market, Best Buy, Target, Petco and 5 and Below. We rounded out our day with dinner at Cracker Barrel, and still Ashley was happy and smiling. In fact, my son, Chip, said she was happier than he had seen her in a long time. It's amazing what a little retail therapy can do for a person, eh?

While I was very pleased with how Ashley handled her day, I was much less pleased with the accessibility with some of the stores we visited. I'll tell you more about that tomorrow...

Friday, November 28, 2008

What About The Leftovers?

Leftovers – lots of leftovers – turkey, gravy, yams, stuffing, green beans, rolls. One of the best things about Thanksgiving dinner is having leftovers for the next few days. One of my favorites is a hot turkey sandwich – leftover turkey piled high on leftover yeast rolls and then covered in leftover gravy. After a few days, we are driven to get creative with the leftovers, but to me, they are still just as good.

Did you know that a lot of the children in foster care, children waiting for a family to call their own, feel like leftovers? They have watched their friends and sometimes their family members get adopted, but they still wait. The feel like the leftovers that everyone has grown tired of.

But just as we get creative with our Thanksgiving leftovers, we can get creative with the children who wait for a forever family. It’s certainly not going to be easy to bring a teenager into your family, a teenager who has been rejected so many times that he will try to reject you. It’s not easy to bring the group of three siblings home to your quiet, clean house, but trust me, they won’t have much to bring with them to mess up your house. Or the child with significant disabilities that is spending her life in an institutional setting – all she wants, even if she can’t verbalize it, is to wake each morning with the knowledge that she is loved and wanted.

As National Adoption Awareness Month draws to a close, I implore you to examine your lives closely and see if there is any way possible that you can bring home a child who believes he is a leftover that no one wants.

Thursday, November 27, 2008

Happy Thanksgiving

This is a tough year to be thankful. I’ve even stopped watching the nightly news because the continued talks about the failing economy, home foreclosures, layoffs and such depress me greatly. Yes, I am probably just sticking my head in the sand, but now, especially during the holidays, I don’t need to be depressed.

I don’t believe there is any person among us who has not been touched in some way by the grim economic situation this country is facing. But, I have to keep telling myself, and my sons because they worry also, that this is part of a cycle. Perhaps it is time for the greedy world of wants and not needs to get a wake up call. It’s hard though, especially for a child, when they haven’t experienced the full cycle before.

I do believe that as parents we need to make sure our children do not get too preoccupied and concerned with the gloom and doom. We can create lessons to be learned, but we, or at least I, don’t want to create anxiety.

So for today, let’s all find something for which we can be thankful. Be it small things or big things, I believe we can all find something. Share those things with your children, and ask them to share with you their list of thanks.

Our world, though troubled, is still a beautiful, special place to live and grow.

Happy Thanksgiving!

Wednesday, November 26, 2008

Special Exposure Wednesday

Two years ago, I started this blog with a story about Ashley dancing with a boy. That boy, Miles, was her first real crush, and while they attended middle school together, whenever I said his name, she would get the biggest smile on her face.

Unfortunately, Miles moved to high school this year. But last Friday, Ashley ran into Miles at a local grocery story. You can tell from the expression on her face that if he said, "Ashley, let's run away to Alaska, shoot moose, and watch turkeys being slaughtered", she would immediately start packing her rifle.

She definitely has not forgotten Miles...

Make sure to visit 5 Minutes For Special Needs to see all the other great SEW photos!

Tuesday, November 25, 2008

Dog Brain on Drugs

Adjusting to life with Rocky dog has been quite an adventure so far – both for the family and for Rocky. The dog which came home from the SPCA with us was calm and well-behaved. Once he figured out that we had to go to school and work 5 days a week, he was a little miffed. And he expressed his displeasure by destroying his crate – actually 3 crates – and wreaking havoc around the house.

The vet calls it extreme separation anxiety. And on Friday, Rocky was prescribed seizure medicine – Phenabarbitol – to help ‘calm’ him. The vet called in the prescription to our local pharmacy, and the pharmacist had a great laugh as she entered Rocky’s information into our family record of medicines. We are probably one of their best customers, if not the best given all the prescriptions my kids and I take. And now we have one more family member on their roles. If only my insurance prescription coverage extended to Rocky….

Rocky’s meds seem to be helping a bit. We took a couple of short trips over the weekend to see how he would handle the situation. He didn’t destroy another crate, although he did bark a lot when we left. But I was encouraged. Yesterday morning and this morning, I could almost read it in his eyes that he knew we were going for a longer time. Yesterday he barked a while, but then settled down, and he didn’t get out of his crate. This morning he barked a little longer, and I won’t know until this afternoon how he does with the whole day.

He’s such a good dog other than the separation anxiety and his strange obsession with Tickle Me Elmo, and I really hope we can work through this. If anyone has other ideas, I would love to hear them!

Monday, November 24, 2008

My Sorority Sisters

I didn’t belong to a sorority when I was in college, but I feel like I belong to one now.

I ran into one of my sorority sisters in the parking lot at Target yesterday. She, like I, was struggling to get a wheelchair out of the back of a vehicle. The slight smile on her face told me that it was just as difficult for her as it was for me.

Another sister and I connected at the restaurant where I was picking up dinner on Saturday night. Her son with Down Syndrome was very loudly telling everyone at the bar why they shouldn’t be drinking. His mom looked into my eyes, then noticed my daughter shredding all the napkins while waiting for our pickup, and a look of absolute understanding passed between us.

My sisters are everywhere – in the hair salon holding their daughters in death grips and hoping for a passable haircut – at the grocery store putting as many items back on the shelf as they take off the shelf – in the waiting room at our children’s hospital tube feeding their teenagers – and standing outside the women’s restroom trying to decide how they will help their almost-adult son with his toileting needs.

No matter what town I visit, my sisters and I recognize each other. We don’t have special handshakes or secret words or sappy songs we sing. We have our children and the unshakeable knowledge that we are not alone.

Friday, November 21, 2008

Can't We Do Better?

I attended a meeting this week at the day support facility for my oldest daughter, Jessica. Jessica is going to be 18 years old in just a couple of weeks, and after school and on school holidays she attends a program at one of our local facilities that specializes in day support for people with cognitive disabilities.

Jessica has been at this particular facility for six years, and prior to that, she spent 2 years at a similar program run by another disability-focused entity. If you do the math, you will see that she started in these programs when she was 10 years old, an age where most children of the same age are attending daycare facilities after school and during school holidays. However, because of Jessica’s aggressive tendencies, no traditional daycare facility would agree to accommodate her.

I’ve never cared for the day support programs, but as a working single parent, my options were limited. The first program Jessica attended was staffed by low-paid workers, most of whom had little to no experience in relating to people with cognitive disabilities. The facility itself was gloomy and dark, and the ‘clients’ (the name for the children who attended the program) would sit around doing little for most of the day. Homework help was nonexistent, and even though plans of care were developed for each child, they usually were not followed. The atmosphere was so depressing that I hated sending Jessica there each day. A depressing environment was definitely not what she needed.

After the first facility, Jessica moved to the only other program in our area, the one that she is currently attending. While the staff at the second program is slightly better trained, the feeling I get when walking in to the facility is not positive. The rooms are small and crowded, and the furnishings are old. The look is not what one would find in a mainstream daycare facility, but rather gives the impression that the people in charge think appearance will not matter to their ‘clients’.

Since all the ‘clients’ have significant cognitive issues, and many have significant behavior issues, I have to wonder how Jessica, and all the other children for that matter, will have positive behaviors and habits modeled. While observing during my meeting, I saw older teenaged clients being handed crayons for coloring. I saw those same clients throwing the crayons across the room. I saw Jessica trying to flirt with a boy about her same age, but her flirting led to inappropriate touching and language. The staff person merely pulled Jessica away from the boy. I saw a young man with Autism rocking back and forth and moaning. The staff person sat right next to him and did nothing. Then a young girl, probably about 13 or 14 years old, came running through the room, naked and touching herself. Many of the other clients laughed, and even one staff person laughed with them.

I have been searching for years for a program that will be a good match for Jessica, both now and in the future. So far, I have found nothing in my city. I realize that caring for and supporting children with significant challenges is not easy, but there has to be something better. Our service delivery systems are doing a rotten job, and I don’t know what to do to change it. Just today in the news, my state’s legislature announced it was going to look to cut social service programs to balance the budget. If that happens, the bad is going to get even worse, and our children and adults with cognitive disabilities will continue to have bleak futures.

Thursday, November 20, 2008

Thankful Thursday

Today, I am thankful...

  • for library Saturdays. Bringing home a pile of delicious books to read is almost as good as Christmas in my eyes

  • for the little space heater I have in my bedroom. For some reason, the rest of my house can be toasty warm with the themostat set at 68 degrees, but my room is an icebox

  • that Ashley seems to be feeling much better since getting antibiotics for her ear infections

  • that Petco took back the dog crate that Rocky destroyed in his separation anxiety induced frenzy. They gave me a full refund and I applied it towards a plastic enclosed crate which we are trying for the first time today. Wonder what I will find when I get home today...?

  • that I only have to work (at my paying job) two and a half days next week. I'm so looking forward to spending time at home with the kids and eating lots of good Thanksgiving food!

  • that my sons have gotten up all the leaves in our yard. Now, if the wind would stop blowing my neighbor's leaves into our yard, the boys would be much happier.

  • that Starbucks is once again selling their Caramel Apple Spice drink. It's my once a month treat - last year, it was a once a week treat, but with the economy, know

  • for the very special time I had last Sunday with Lynnette and Brooke at the Disney Playhouse Live show

  • that I have gone an entire week now without having to take my car into the shop - knock on wood

  • for earmuffs

Wednesday, November 19, 2008

Special Exposure Wednesday

Just because one is deafblind, it doesn't mean a boat ride on the ocean is any less exciting. Ashley loved the wind in her face and the taste of the salty spray on her lips. And the faster the boat went, the happier she was! She can't wait for our whale watching trip scheduled for Winter Break!

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

Tuesday, November 18, 2008

Joel's Card Games

One of my favorite fellow bloggers is Joel at the NTs Are Weird - An Autistic's View of the World. His intelligence, insight and positive attitude towards life and other people has really helped me view the world from someone else's eyes - someone who is diagnosed with Autism but whose shared information can be easily applied to other types of disabilities.

Joel recently wrote a post called Card Games in which he discussed the difficulties that many people with Autism experience with touch, particularly in a romantic relationship. Joel, newly engaged, shared a technique, a card game actually, that he and his fiance use to make sure their shared touches are appropriate and welcome.

Their card game is simple - both Joel and his fiance made up a deck of cards, with short descriptions of a kind of touch they would enjoy. They kept their decks separately, and exchanged them with each other when they decided they wanted to enjoy some touch with each other. One of them would draw a random card, look at it (you don’t look until then), and, without showing the other, do whatever the card says.

Quoting from Joel's blog, "For example, you might draw a card that says, “Gently stroke my hair”. So, without letting your partner know what you are doing (but they know you are going to do something they like), you are able to touch your partner - and your partner knows that whatever you do is going to be something safe, which is important for many people, such as abuse survivors. You are doing something your partner has explicitly said is safe."

I think Joel's approach is brilliant and urge you to read his post yourself. I can't wait to brainstorm some other situations in which this approach would work, especially as it applies to Ashley and others who are deafblind. Her sensory issues are also quite intense, and I am sure Joel's approach can be adapted to help her make sensory experiences more enjoyable.

Thank you, Joel. I absolutely adore your blog and all your wonderful ideas. And, congratulations on the engagement!

Monday, November 17, 2008

Smiles Galore

Last January, I wrote about a young man named Chancellor. He was 10 years old and was one of the founding children of our Dreamcatchers family support organization. Chancellor passed away on January 18th, but his zest for life lives on. He could squeeze every ounce of fun from every day, and in his honor, the Chancellor Rice Memorial Fun Fund was created.

Each year, Dreamcatchers will choose a child for a 'Day Of Fun' - a day defined completely by the chosen child. Our first recipient of this award went to the lovely Brooke.

Brooke is also 10 years old, and for her day of fun, she wanted to go to the Disney Playhouse Live show. And that is exactly what we made happen for her!! Below are some pictures from Brooke's special day yesterday...

Sure, Brooke wanted to meet the Disney characters, but don't let that shy smile fool you. She also has a thing for tall, dark handsome men. And the photographer from their local news station fit that bill!

To make things even better, after the handsome photographer stepped away, Mickey and Minnie Mouse stepped in! Brooke had a private meeting with the mice, and she kept searching on her communication device for the right words to express her surprise.

Once the show started, Brooke's eyes never left the stage. I doubt even the handsome cameraman could have competed at that point.

The joy was written all over her face!

Even as we left the show to head home, the smile never left her face and she kept looking at the character's pictures on her communication board. Was it a good day of fun for Brooke? Yep, I believe it was!

(The story of Brooke's adventure was covered on the local news station. If I can find the video, I will post it here also.)