Merry Christmas To All

Today starts our 'unplugged' holiday, but before leaving for a week, I wanted to wish everyone a very Merry Christmas. I hope your holidays are full of joy and love. My year has been enriched greatly by each and every one of you!

Special Exposure Wednesday

This year when my children asked me what I wanted for Christmas, I didn't give them a list of 'things' but rather a list of 'services'. I know they don't have much money, but what they do have is ability.

My oldest son, Chip, offered to paint the living room, kitchen, dining room and hallway for me, and he is doing a wonderful job!! Here's sneak peek:



The wall above the chair rail is a light butterscotch color, and below the chair rail is a mossy green color. The chair rail is a creamy white. He picked the colors himself and they look fabulous!

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

Today I am thankful for all the hidden talents my children possess!

Put On Your Dancing Shoes

This is a plea for help! It’s December 22nd and I still need some Christmas gifts for Ashley. I know exactly what I want to get but don’t know how to find it.

Ashley is deafblind, but she loves loud music and loves to rock out to it. She will not, however, wear headphones. She wants to watch something on TV while the music is blasting. I’m not sure how to explain it, but she seems to need to feel the music (lots of bass) and also get some visual input at the same time. To her, that is the equivalent of a teenager listening to an IPod.

So what I need are ideas about DVDs or BlueRays that would have bright colorful characters or people (can be cartoonish) singing songs with simple melodies. For instance, one that she really likes is on a Sesame Street DVD we have. There is a cartoon lady with a quirky voice singing Itsy Bitsy spider. Ashley likes to do the hand movements and sway her head and body at the same time.

The disk needs to be all music (and dancing if possible), not something like the Imagination Movers who sing occasionally but talk in between songs. Does this make any sense at all??

Actually, I can’t wait until she is older and I can take her to an actual dance club with really loud music and flashing lights, but 14 is a tad too young for that, don’t you think!?

Today I am thankful for the power of the Internet in helping to find something that I really can't define well

Snow Bound

I tried really hard not to complain this holiday season. I didn't say anything about the stores and all their aisle-way displays making it impossible for a wheelchair user to shop. I haven't written any blog posts about all the people who seem bothered when I ask them to move just a bit so I can get Ashley's wheelchair around them, or the people in their cars who seem impatient as I load her wheelchair into the car.

But now I have to say something. Yesterday, after being stuck in the house because of an historic East Coast snow storm, we finally dug out and decided to go to the mall. As you probably know, the malls always have their parking lots clear before any other business, and that was especially true this last weekend before Christmas.

So, our road had been scraped, my boys had cleared the driveway, and we headed out. This is what we found when we arrived at the shopping mall:



Apparently people with disabilities should stay home when it snows. And for the record, I saw NO regular parking spots that had been blocked by snow. 4000 clear parking spots, and 4 clear handicapped parking spots. It's really too bad because I had quite a lot of shopping to do....and quite a lot of money to spend.

Today I am thankful for those people who believe in community and inclusion.

Snowed In

We got as few more inches of snow after this picture was taken. I must say though, that in the past, this much snow would have crippled my home town. But not this time. Our neighborhood road was cleared in less than 24 hours, something that in past years would have taken a week.

I'm hoping it will stick around for Christmas!

A Single File Existence

I guess I never paid attention to this before.

Back in 2006, I wrote about some adult group home residents that I saw at one of our local malls. I wrote about their walk through the mall – “I saw the two women in charge leading the slow-moving group, and the four clients trudging slowly behind, not seeming the least bit interested in their surroundings. They were in almost a single file line, and at the end of the line was Jack, working desperately to pull his underwear from his behind where it had apparently gotten ‘stuck’.”

Then yesterday, while shopping at Walmart, I saw an older gentleman with Down Syndrome, probably in his 40’s, shopping with someone who appeared to be his mother. I’ve seen the two of them before out and about in some of the same neighborhood places I frequent. This gentleman followed his mother in single file through the store, and has done the same thing every time I see him.

Also yesterday, I drove past an apartment complex near my home, apartments where our local community service board assists adults with intellectual disabilities live as independently as possible. I often see some of the residents making their way to the Walgreens or the McDonalds on the corner. Every time I see them, no matter how large their group, they are walking in single file.

Why single file? Why not walking side by side, chatting, laughing or even arguing? Instead, their faces are frozen with no expressions – they never talk to each other – they just walk, one behind the other, to their destination and then back home again.

How did they learn this behavior? Is this what we have taught them is the only acceptable way to be a part of their community?

All this saddened me, and I plan to make sure my children know they don’t have to walk in single file. They can run and skip, they can link arms or hold hands, they can talk and laugh and yell sometimes. I don’t want my children, or for that matter, any other person with a disability, to have a single file life.

Today I am thankful for bold, quirky people. They make life so much more interesting.

Pulling the Plugs

I always wonder during a thunderstorm if the lightning is finally going to hit our house because we have so many electrical ‘things’. There are of course, the lights, the TVs, the video games, and the stereo. I’ve lost count of the computers we have – ones from school, my son’s computer for college, his computer for home, his ‘old’ computer that he has set up as a server in the house, my home computer, my work computer. And we can’t forget the cell phones and the IPods and the kitchen small appliances.

See, we probably do suck way more than the average amount of electricity. But all that is going to change for a week in December.

As a family Christmas gift this year, we are UNPLUGGING our life. We have rented a cabin in the mountains, a cabin with no TV, no computers, and no cell phone service. The cabin is on the edge of a forest, and we are hoping that our neighbors will be bears and deer, instead of garbage trucks in the morning and motorcycles in the night. We will go to bed when we feel like it – get up when we feel like it – go for hikes in the woods – walk beside the lake on a freezing winter morning. We will cook soups and stews and sit around in flannel while we eat it. My boys will learn to light a fire in the fireplace, and how to set it up to keep warm during the night.

We will play card games and board games and maybe, just maybe, will sit around and talk!

And….I will not be blogging for that week - the week between Christmas and New Years. My commitment to my blog has been to always write every Monday through Friday, and I have done that for three years now. I think it is high time for a vacation!

Don’t you?

Today I am thankful for the technology that delivers electricity to our home, and for the ability to shut it all off!

Special Exposure Wednesday

This picture really doesn't do our new wheelchair ramp justice. It looks rather small in the picture, but it is the biggest, baddest ramp in my little corner of the world!!!



Be sure to check out all the other Special Exposure pictures at 5 Minutes for Special Needs!

Self-Regulation

Our children grow and mature right before our eyes, but sometimes we might miss some of the small details. Ashley reminded me of one of those small details last Saturday!

As I mentioned in yesterday’s post, Saturday was the annual Dreamcatcher’s holiday party. The party was held at our house, which is a good size but not huge by any means. And we had a whole bunch of people packed in there! Even though we could have moved between several rooms, all the parents, all the children, and all the childcare workers ended up in our family room. Some sat on couches but most sat on the floor.

It was quite loud what with all the children and all the noisy toys turned on, and I was really interested to see how Ashley was going to handle that. When she was younger, five minutes of such a stimulating environment would have been all she could handle, and the result would have been a meltdown. But on Saturday, she sat right in the middle of the fun for two hours!

The amazing thing however came at the end of those two hours. Ashley got up, walked out of the family room and headed to the living room. In there, she stretched out on the couch with one of her vibrating toys and did a little of her ‘Stevie Wonder Stim’ – rolling her head from side to side.

She stayed there for the next hour, happy as could be, and as folks were leaving, she got up and was in a great mood.

She knew – she really knew – when she had enough of the stimulation. She knew – really knew – what to do to center herself again. Self-regulation of this sort is HUGE for a child with deafblindness, and shows real maturity and understanding on her part.

My little girl is becoming a fine young woman!

Sharing Our Dreams

This past weekend was the third annual Dreamcatcher’s Holiday Party. Dreamcatchers is a statewide support group, established many years ago in Virginia and made up of families whose lives have been touched by deafblindness. Those of us who have been with the group for many years have watched our children grow and flourish, and we are now watching a whole new group of young children and their families as they travel the path of deafblindness.

We are a non-profit organization, but one which does not generate many funds. In fact, if it were not for the generosity of our state’s Board for the Blind and Vision Impaired, we would have no funds. But even without money, I believe we would still come together periodically because the coming together is so very important to us all.

We have been there for each other during the grief that often accompanies the diagnosis of deafblindness. We have felt the strength of the parents that have come before us, and we all continue to grow into the parents that our children need us to be.

We laugh together – we plan the educational strategies for our children together – we celebrate the successes and learn from the failures – we provide emotional support in difficult times – and we are even there sharing the heart wrenching tragedy of losing one of our children.

We continue to exist on a wing and a prayer but because we have all seen the power of that prayer, I strongly believe our organization will always go forward.

Thank you to all the parents who joined us this past Saturday. Thank you for braving the cold weather – for setting aside your busy schedules for a day – for traveling many miles for some food and some camaraderie – and for sharing your beautiful children. And a special thank you to the lovely ladies of the Virginia Deafblind Project for joining us!

I hope you all have a wonderful holiday season!

Today I am thankful for the warm feeling of connectedness that comes with sharing our dreams for the future.

Bad Mother?

I work in an extremely stressful job. It’s so stressful that my team keeps a blood pressure cuff in the supply closet just to be on the safe side. I’m not complaining (much), because at least I still have my job. So many state employees have been laid off this past year, that I do feel a little guilty complaining.

When my work day ends, I am so anxious to leave and get home. When I do get home, I am met by my children acting just like a pack of excited puppies puddling at my feet. And I’m not complaining (much) about that either. But, I really would like just five minutes to unwind, change clothes and shred the pressures of the office.

Instead, I am asked what’s for dinner – I hear about what happened at school – I get reports from Amy, Ashley’s aide – and I listen to cats whining to get food.

I really do want to hear those things. I am so grateful that my children do share the happenings of their day with me. I’m thrilled that they are happy to see me each evening.

But I just want five minutes…five short minutes.

Does that make me a bad mother?

Today I am thankful that my children like me, really like me.

Guest Blogger - Chip

My son, Chip, who is a college freshman, was given an assignment in his English class to write a paper about a problem of his choosing, and then to brainstorm a way to solve the problem. He got an 'A' on the paper, and I wanted to share it with you all also:

Group Home Residents Are People First

John Burton claims, “Residential homes are bedeviled by poor management on all levels” (Burton, xv). I wholeheartedly agree with John Burton’s statement about residential home management. The reason is because my adopted sister, Jessica Nickerson, is currently living at a group home for the mentally disabled. Having witnessed the poor conditions that Jessica experiences each day, I want to restructure how the group home is managed and enrich, rather than demean, the lives of all the residents at the group home.

Jessica, now nineteen years old, was diagnosed with brain cancer at four months of age. She had a tumor removed, followed by two years of chemotherapy and radiation treatment. All of that left her with a significant cognitive impairment. However, even worse than all of that were the nine years she spent in foster care. While in foster care she was both physically and sexually abused and as a result she is diagnosed with a significant mental illness.

Jessica was adopted into my family when she was nine years old. Due to her mental illness and resulting aggressive behaviors towards other family members, my mother made the difficult decision to place Jessica in a group home at the age of thirteen. The group home that my mother chose is operated by a large corporation, which operates in many states along the east coast. It was that fact and the fact that it is one of the more expensive group homes that led my mother to believe it would be a good place for Jessica to live. However things have not worked out that way.

From the time Jessica was placed in the group home there have been a plethora of issues. The first issue that concerned my mother was that Jessica gained weight at an alarming rate. After a week of asking Jessica what she had been eating for dinner, my mother learned that meals consisted of high calorie, fatty foods and a lack of fruits and vegetables. In fact, while I was writing this paper, Jessica had called and during the conversation she mentioned that for lunch she ate hot dogs and cheese fries. In addition Jessica was living a sedentary lifestyle on the couch in front of the television.

A second issue that my whole family noticed was that Jessica would be more aggressive than usual when she would come home for visits. This prompted my mother to call Jessica’s psychiatrist. She found that Jessica had missed about half of her appointments.

Another issue my mother encountered was that Jessica appeared dirty, unkempt and had a body odor when she came home for visits. After having her cancer go into remission, Jessica lost the use of her left arm and hand. This condition makes it difficult for Jessica to completely care for her own personal hygiene and grooming. After my mother asked the staff at the group home about Jessica’s nightly hygiene routine, she found out they do not assist Jessica with these tasks.

On August 29, 2009, my mother went to see Jessica at the group home and to deliver school clothes and supplies. When she arrived she was appalled at the condition in which she found Jessica’s bedroom and bathroom. This led my mother to write a letter to both the group home manager and the state agency that licenses group homes. Among the problems my mother documented in this letter were dried vomit on Jessica’s bedding, mold and filth in Jessica’s bathroom, months old food in her room and dangerous cleaning products left in her room (Appendix). As stated earlier, since Jessica has very limited use of the left side of her body, she is not able to thoroughly clean her own room and bathroom. The group home has twenty-four hour staff coverage that should be responsible for assisting Jessica with these tasks.

John Burton believes, “ No amount of good intentions on the part of the managing organisation will translate into good care unless the Home itself is well managed from the inside… for good residential care to become an established reality, both ‘inside’ and ‘outside’ management must work together towards one goal – meeting residents’ needs” (Burton, xv). In the case of Jessica’s group home management this is not happening. Their goal is just like many other big corporation run group homes and that is “to maximise profits for the shareholders and/or proprietors” (Burton, 48). I am not suggesting that these corporations are wrong for making money being their top priority. What I am suggesting is that if a corporation chooses this line of business, they should not try to maximize profit at the expense of resident care.

If I could completely restructure how Jessica’s group home is managed I would change several things so that Jessica’s and all the other residents’ quality of life is improved. The main change that I would make is the creation of an advisory board for the group home. This advisory board would not be hired by the corporation that runs the group, but instead it would be hired by the county in which the group home is located. The board would consist of seven members. One member would be a representative for the company. One member would be an employee from the county. One member would be representative for the staff of group home. Four of the members would be advocates for each resident of the group home. The advocates could be a resident’s family member or if the resident doesn’t have a close family member, he or she could choose another person to be their advocate. This advisory board would make sure that the company and the residents are both satisfied with the group home.

The second thing I would do would be installing cameras in the common areas of the group home. These cameras would be on all day and would also be hooked up to a digital video recording device. The cameras would also be hooked up to the internet via a secure, password-protected internet connection for the residents’ families and the advisory board members to view at any time. The purpose of these cameras would be to make sure that the staff is doing their work and to ensure the safety of the residents.

The last thing I would change is the makeup staff that works inside the group home. The current staff consists of workers with little or no training in the field of care of the mentally disabled. The staff works long hours and are poorly compensated for the work that they are hired to do. This combination makes for a dreadful work environment for the staff, therefore the amount of time in which a worker is employed is not very long. This quick staff turnover makes it difficult for the staff and residents to develop enjoyable relationships.

To fix this problem I would require all future workers to have had one hundred hours of training in the area of working with the intellectually disabled. Also the staff would have to take a test at the end of each year on their training. If a worker fails the test, he or she would have to take a class for two weeks on working with the mentally disabled before returning to the group home.

I would also increase the amount of compensation that the staff would earn. The base hourly wage would be ten dollars an hour. The hourly wage is increased based on past work experience with the intellectually disabled, references and any other applicable skills. There would be a minimum of three staff members in the home between the hours of 9 A.M. and 5 P.M. There would also be a minimum of two staff members in the home between 5 P.M. and 9 A.M. No staff member can work more than nine hours a day and fifty hours a week. Also, since working at a group home can be a very stressful job, the staff would have a stress management counselor available to them at any time.

I would be content if the group home manager took even one of my suggestions to heart and made a positive change for the group home residents. Making a decision to place a family member in a group home is perhaps the most difficult decision a family can make. The family should not have to struggle with the fear of what life is like for their family member in the group home. Group home residents, regardless of their cognitive ability, have all the rights that any other citizen has. As John Burton so wisely points out, “…homes for people disabilities… do not have to be bad places to live: they can be – and occasionally are – the very best places for their residents to thrive” (Burton, Preface).

Works Consulted
Barron, James. “New York Cited In Warehousing Of Mentally Ill.” New York Times 09 Sept.
2009: 24. Academic Search Complete. EBSCO. Wev. 28 Nov. 2009.
Burton, John. Managing Residential Care. London and New York: Routledge, 1998. Print.

Special Exposure Wednesday

This smile is what makes getting up at 4:30am each day worth it...



Sorry about the poor quality of the picture. It was taken with my phone and in the dark! Finding the real camera at 4:30 in the morning is an impossibility.

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

Amazon Listened!

First, an update to yesterday’s post – thank you all for your comments. I have some places to start looking now, and I’m not feeling quite so bad. Asperger’s is a tough disability. Corey looks like every other teenager his age, but if you spend any amount of time with him, the social skills issue will be quite glaring. Couple that with his awful past and the lack of good role models during the most impressionable time of his life, and you have a troubled young man who tries really hard to present himself as ‘normal’. Somewhere along the way he also picked up a very strong lack of motivation, and no desire to work at all. It’s a tough situation, but all your comments have been very helpful. I will keep you updated as we progress through this difficult time.

And Terri, yes, Corey does have an IEP. I think staying in school a while longer would be beneficial for him, but convincing him of that is probably not going to happen.

Now, onto today’s post.



I know I have bashed the Amazon Kindle several times on this blog for not being fully accessible for people who are blind. It always made me crazy that we had an amazing piece of technology that could have been a real asset to a person who is blind, but because of some design decisions, wasn’t.

Well that has now changed!

Amazon has announced that by the end of the next summer, new features will be added to the Kindle that will make it accessible to people who are blind. Check out this article from MSNBC:

Kindle Improvements

Now if we can just get authors and publishers to stop refusing to make their books on the Kindle audible…..

A Bleak Future?

I’m really starting to worry about my 17 year old son, Corey. If you’ve been a long time reader of my blog, you probably know a little about Corey, but if not, I’ll summarize.

Corey spent the first 8 years of his life living on the streets of Baltimore with his prostitute, alcoholic, drug addicted birth mother. Then, from ages 10-14, he was reluctantly rescued by his grandparents who took him to live in their Florida retirement community. After years of searching for another home for him (apparently his aunt and uncle, who live less than 5 miles from me, weren’t interested), I was approached and agreed to let him join my family. I first introduced my readers to Corey back in 2007.

Corey is diagnosed with depression, ADHD, and Asperger’s Syndrome. While his depression and ADHD are well controlled with medication, it’s the Asperger’s that has me worried for his future.

Corey has said he wants to join the military. I don’t think they will take him. His social skills are those of an 8-10 year old, and holding down a job isn’t something I believe will come easily for him. His grades in school are not good, and college, even community college, seems well out of reach.

So what will happen next year when he graduates from college? And what will happen with the rest of his life?

Even in a loving home, a home that balances limits with a chance to grow, he hasn’t grown. He is still a 10 year old ball of emotions with the cognitive ability of maybe a 9th grader, and the hormones of a grown man. How can all that be packaged into an employable person, a person who can provide for himself in the not too distant future?

I welcome any advice and suggestions any of you may have. Heck, I may even be willing to pay for them!

Friday News Reel

Can you hear with your skin? Or perhaps see with your ears? Researchers at MIT think so. Check out this article – it’s pretty short – but packed full with interesting information about what our future might hold.

Using All Our Senses

If you are deaf and a passenger on a plane, how do you know what instructions and information the airline staff is giving you? If the plane you are on has landed but you aren’t allowed to disembark for an hour, would you get nervous and maybe agitated because you couldn’t hear what is happening?

Students at the Rochester School for the Deaf have been in that situation, and have come up with an idea on how to make things much better, not only for deaf passengers but for all passengers. Check out their idea here:

Students Develop Innovative Plan

And finally, because it is Friday, I thought we needed a little entertainment to kick off our weekend:

Rhapsody

Enjoy and do something fun this weekend!

Poor Little Sick Disabled Girl

I’ve warned Ashley’s teachers. Amy, Ashley’s intervener, has warned Ashley’s teacher. Yet they still fall for Ashley’s manipulation.

Yes, Ashley is very cute. Yes, that sweet smile will melt your heart and make you want to do anything you can to keep the smiles coming. Yes, your heart melts when she leans in to kiss your cheek and sign “I love you.” And yes, she knows exactly what effect she has on people.

Ashley wasn’t in the mood to go to school yesterday. It was a gloomy, rainy morning and she preferred to stay curled up on the couch next to me. But, when the bus arrived, her cute self had to get up and get on the bus. You see, I am somewhat immune to her antics. But the staff at this new school is not, and they are not heeding our warnings.

Ashley acted tired when she got to school. She kept putting her head down on the desk. When her well-meaning aide and teachers asked her what was wrong, she signed that her head hurt and her throat hurt. “Poor thing”, they thought and immediately carted her off to the clinic. They told the school nurse that Ashley just wasn’t acting like her normal cheery self. They, and the school nurse, decided she must be sick and then decided to call me to come and pick her up.

She had no fever. She wasn’t vomiting. She had no diarrhea. But because she just wasn’t “being herself”, she was allowed to lie down in the quiet, dark nurse’s office, and immediately she took a nap.

I arrived to get her. I woke her up, and the first thing I saw was her sly smile. Then came the giggle. She knew she had won – I was there and I was taking her home. (Once the decision is made by the school nurse that a child needs to go home, the decision will not be reversed.) It was amazing how much better she seemed as we walked to the car. And her good spirits continued through the afternoon and evening.

Ashley knows how to manipulate. Just because she has disabilities, it does not mean she is stupid. She is a teenager, and somehow very soon, her teachers and aides need to understand what she is doing.

Somehow I need to help them learn how to unwrap themselves from her little finger!

Today I am thankful that the rain has stopped and the sun is out. We haven't seen the sun much recently.

Special Exposure Wednesday

If you are visually impaired, what's one of the best things about Christmas? The lights, of course!



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

Today I am thankful for Christmas lights - every size, every shape, every color - the more the merrier!

Do NOT Pity Me

Following our normal post-Thanksgiving tradition, the kids and I headed out pretty early last Friday for some Black Friday shopping. I love finding deals, but I also love the experience of moving along with a crazed crowd searching for an item that you know will cost less after the first of the year.

I wrote last year about our Black Friday experience and the problems we had navigating some stores with a wheelchair. It was interesting to me that this year things were a little easier. I wonder if all those store managers read my blog?

Since the navigating part of our Black Friday experience was easier this year, I was able to spend sometime people-watching. I saw lots of different ‘looks’ on the shopper’s faces – worry, excitement, the thrill of the hunt – but I also saw something that bothered me. I saw pity and sadness whenever a shopper would look at me pushing Ashley through the store.

Over the years, I have learned to deal with people feeling sorry for Ashley. I usually scoff a bit and enlighten them on some of Ashley’s antics. I share how she is much more like her peers than different, and it usually works. People would walk away with a good bit of the pity look wiped off their face. But this time the pity seemed directed at me.

It hit me pretty hard. Do people feel sorry for me that I have a daughter in a wheelchair? Do they believe my life is less than good because of that? Do they think I have regrets and dream about the child Ashley could have been had her birthmother not been an alcoholic?

I wish all those people with their pitying looks could read this blog. I wish they could understand that my life is complete, not unfulfilled, because I have a child with a significant disability. I wish they could spend a day with us and see that we are a joyful and more typical family than they think. I wish I could tell them that I am happier then I ever dreamed possible BECAUSE I have a child with a disability.

Here’s hoping some of them will read this blog, and will then understand.

Today I am thankful that Ashley's birthmother agreed to place her for adoption

The Toughest of Times

One of my biggest fears as a mother is not being able to provide for my children. Given the current economic environment, and the fact that my employer is laying people off at an alarming rate, this fear is ever present.

But, I still do have my job. I am still able to provide for my family. Little has changed other than the cost-saving measures I have put in place over the last year. They are small things – like buying generic or store brands at the grocery store – but I believe that it can make a difference.

Two things happened this past weekend however to make this disastrous economy rear up and slap me in the face.

First, a friend of mine that is in her 50’s and who had worked for IBM for over 20 years was laid off. Her husband is in real estate, and not being the most eager beaver, almost never sells anything. That is nothing new, but now that my friend has lost her job, the meager amount her husband brings in barely buys the groceries.

My friend has searched and searched for a job with no luck. She is currently a sales clerk at a clothing store and bringing home minimum wage. The family is living on an equity line of credit, unable to plan for college for their high school senior daughter, and as she said, probably two months away from losing everything.

The second slap in the face happened when we posted something on freecycle.org. We had been going through all our Christmas decorations, and decided that we had too many lights, cookie tins, stuffed Christmas animals and other general decorations. We decided to post these on freecyle.org and give them to the first person who responded. Within an hour, 55 people responding asking for the decorations. Each one had a story, and the stories were all very sad, e.g. “I’ve been laid off, can’t provide Christmas gifts for my children and the lights would make them so happy.”

Fifty five people in an hour – fifty five people who can’t provide Christmas – too many children to count who won’t know the joy of finding gifts from Santa – fifty five families who just want some lights to put a smile on the faces of those children. It made me want to go out and buy lights for everyone who responded (which of course I can’t do).

What I can do is to remember these events and do whatever I can to brighten the holidays for someone else. And I urge you to do the same thing.

It can be something small and simple – take some food to a foodbank, drop some change in the Salvation Army kettle, visit a neighbor who spends most of their time alone, call an old friend, help out at a homeless shelter, befriend a child in a group home. But I challenge you all to do something.

Even when times are bleak, I believe we can find ways to help others. I would love to hear your stories of helping….

Today I am thankful for all that I have and that I am able to share what I have with others.

Happy Thanksgiving

Happy Thanksgiving, everyone! Today I am thankful for many things, including all the friends I have made here in blogland.

I've never met most of you in person, but I feel like we are neighbors who get together each day for coffee and a chat.

This technology which allows us to make friends far and wide, friends that in the past we would never have crossed paths with, is so important to me. You are all a source of support and inspiration, and I can't imagine my life without you all.

Enjoy your families, your feasts, or anything else that makes this day special for you. And if any of you want to share a slice of pumpkin pie, come on by :)

Special Exposure Wednesday

It's time to start thinking about painting inside my house. It's been almost 10 years, and you no longer have to look closely to notice the need for freshening the paint. But how can I paint over this....??



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

Today I am thankful for my family home. It's not perfect, but it's pretty darn close!

Get It Right

I’ve written before, here and here, about the Kindle and how it is not accessible for people who are blind. So, I was really pleased to read that both Syracuse University and the University of Wisconsin-Madison have both rejected the Kindle as a replacement for textbooks. And their main reason for the rejection – the Kindle is not accessible for students who are blind.

The Kindle does have a text-to-speech feature, but I know from using my son’s Kindle that not everything can take advantage of that feature. The National Federation of the Blind, a group that is applauding the decision of Syracuse and the University of Madison-Wisconsin, said last week that while it appreciates the text-to-speech feature, the “menus of the devices are not accessible to the blind..making it impossible for a blind user to purchase books from Amazon’s Kindle store, select a book to read, activate the text-to-speech feature, and use the advanced reading functions on the Kindle DX.

And add to that the fact that many authors and publishers are intentionally disabling the text-to-speech feature on their electronic books.

It saddens me that we have such a remarkable piece of technology and some of the most basic merits of that technology are not being utilized or allowed.

Amazon, it’s time you took another look at this device and your policies regarding people with disabilities. It is a brave new world and you need to embrace that fact, not work against it.

Today I am thankful for all the technology that does enrich the lives of people with disabilities

Teacher - No. Bigot - Yes

I went to the movies with Amy Friday night. She and I and about 300 squealing teenage girls watched New Moon. The movie was good but what happened before the movie was more interesting.

We arrived at the theatre almost an hour and a half before the start of the movie. Already a line had formed, and about 50 people stood in line before us. Soon after we joined the line, an older woman and her teenage daughter stepped behind us. The daughter was a whiner extraordinare, and the mother was one of those people who felt compelled to talk to everyone, stranger or not.

It didn’t take long for us to learn that the mother was a special education teacher in an elementary school in our school district. Amy shared that she also taught special ed, but in middle school. The mother immediately said she didn’t know how Amy did it, that the young kids were hard enough.

The woman then shared that she taught in the preschool special education program. In our school district that means that children with all types of special needs would be in her classroom, and all would be under the age of 5, kindergarten age.

We heard how difficult her job was – how tired she was at the end of the day – how ‘handling’ the kids was really tough. Amy commented that she believed in inclusion and that all students should be afforded similar opportunities, not locked away in separate rooms. The woman looked shocked, and said that some of her students would ‘kill’ the ‘regular’ students if they were put together. Again, just for clarification, her students would be age 2.5 to 4 years old.

I said nothing. I had to choose that option because otherwise I would have made quite a scene.

Anyone who has read my blog for a while knows how I feel about labeling students, having low expectations for those students, and especially how I feel about some of the so-called teachers in my school district. I had to keep quiet because otherwise I would have begun a conversation that would have made everyone around us uncomfortable.

I kept my anger at bay, but sadness consumed me – sadness that children at such a young age are already having their futures determined by people who don’t understand, who don’t care, and who, in my opinion, don’t matter. Yet those people have our children in their clutches at least six hours a day, 5 days a week.

Today I am grateful that throughout her educational journey, Ashley has had two people who 'get it' - Amy and Mrs. Marsh

Wow!!

There are three things that would make Ashley the happiest person in the world. First – a orange shirt with butterflies on it. Second, a Cheeto dispenser in her room, and third, anything that both vibrates and has lights.

I’m working on the first two, and Sungwoo Park is working on the third. All I want to know now is how to get one of their new SOUNZZZ MP3 players.



This new invention is fascinating on just about every level--it's an mp3 player for the deaf that translates musical notes into nuanced vibrations, and it could revolutionize how the deaf experience music--and even give those with hearing an entirely new way to consider music.

I want one – NOW!!!

Today I am grateful for people who stretch their imaginations and make a real difference in the world.

There Is Hope!

Today, U.S. Senator Barbara A. Mikulski introduced in the Senate a bill to strike the terms "Mental Retardation" and "Mentally Retarded" from federal lawbooks. From the press release:

Under Rosa’s Law, those terms would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law. The bill does not expand or diminish services, rights or educational opportunities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization and the President of the United States, through his Committee on Individuals with Intellectual Disabilities.

Rosa’s Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa’s mother during a roundtable discussion about special education held in Edgewater, Maryland. Due to requirements in the Individuals with Disabilities Education Act (IDEA), each student who receives special education services at public schools has an individualized education program (IEP) that describes the student’s disability and the special education and services that child will receive. Rosa has an intellectual disability – Downs Syndrome – and so was designated as a student with “mental retardation” in her IEP, giving way to people at the school referring to Rosa as retarded. Senator Mikulski promised Rosa’s mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

“Rosa’s Law” honors a young girl whose brother said, “… what you call people is how you treat them.”

“This bill is driven by a passion for social justice and compassion for the human condition,” said Senator Mikulski, a senior member of the HELP Committee. “We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me to take a step further. The disability community deserves it. Rosa deserves it.” “Mental retardation” and “mentally retarded” are terms commonly used in federal laws, including the Individual With Disabilities Education Act, the Higher Education Act, the Elementary and Secondary Education Act, also known as No Child Left Behind, and the Rehabilitation Act of 1973.

“We know now that words have meaning, sometimes far beyond what we intend,” added Senator Enzi. “Therefore, we must be very careful about the way we describe the people we see every day, including those with disabilities, or those who are undergoing treatment for a variety of health issues. Unfortunately, the federal government has not dropped this term from our laws and it still appears in the regulations and statutes that come before our legislative bodies and our courts. I am pleased to have this opportunity to join my colleague from Maryland, Senator Mikulski, in introducing Rosa’s law. I would like to thank her for her leadership and her commitment on this issue. Simply put, this legislation will make an important change in the words we use to refer to those with intellectual disabilities. It is a much needed change in the law that is fully deserving of our support.”

When Rosa’s Law was being considered by the Maryland General Assembly, Rosa’s 13-year-old brother, Nick, successfully testified on her behalf for a substitution of mentally retarded with intellectual disability. He explained, “Some people say they are just words, and it’s not going to make a difference if we just change the words. Some say we shouldn’t worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it’ll be the start of a new attitude towards people with intellectual disabilities. They deserve it.”

Well done, Senator, well done!!

Today I am thankful that advocacy efforts CAN make a difference

Special Exposure Wednesday

As I mentioned in yesterday's post, November is National Adoption Month. For today's Special Exposure Wednesday, I wanted to share pictures of some of the children that are waiting for a family and a home. Search your hearts and decide if you can make their dreams come true.

For more pictures and information on children from across the United States, visit www.adoptuskids.org.








Also make sure to visit 5 Minutes For Special Needs for more Special Exposure Wednesday shots!

Today I am thankful for the joy I see in all my children's eyes.

Worth Every Challenge

From a very young age, I always wanted to make a difference – to know that my time spent on this earth was worth something. As I have gotten older, those thoughts refined themselves into wanting to leave the world a better place once I am gone. And through the adoption of some very special children, I believe I am well on my way to achieving that goal.

November is National Adoption Month. Thousands and thousands of children are waiting for families to call their own. These children often have been through hell. They have seen and experienced things that no one, and especially a child, should see and experience. Parenting them will not always be an easy job. In fact, sometimes it will seem downright impossible. But it’s not.

When I first decided to adopt as a single parent, most of my friends and family told me I was crazy and shouldn’t even consider parenting another child, especially a child with significant special needs. In fact, many of my friends have felt that way when I decided to adopt two more times, and when I told them just this year, that I am ready once again to adopt.

Maybe I am crazy, but I am not wrong. Adopting and parenting children with special needs, both medical and emotional needs, has been one of the most rewarding aspects of my life.

I know beyond a shadow of a doubt that I have made the lives of three very special children better than they would have ever been. More importantly, my life has been enriched in a way that words just can’t express.

I’m searching right now for the next addition to my family. I want a child with significant medical needs – a child that probably is growing up in an institution rather than with a family. I know it will be tough, but I have an support system in place, the willingness to tackle any challenge, and more than enough love.

What about you? Would you consider opening your heart to a child that needs a family? I promise that if you do and it gets really tough, I will be here to help you….

Today I am thankful for the social workers who believed in me and who have helped to make my family what it is today.

Insensitive

As many of you know, I have a 19 year old daughter named Jessica. I adopted Jessica when she was 9 years old. She had spent most of her life in foster care, and along the way was both physically and sexually abused. In addition, she was diagnosed as an infant with brain cancer. She had a tumor removed and two years of chemo and radiation. The cancer and its treatment left her with a significant intellectual disability, and her time in foster care left her with a significant mental illness.

Jessica has, however, become a fine young woman. She does struggle daily to keep the mental illness under control, and she is striving to learn enough to be able to live semi-independently. She is still in school, and will stay there until she is age 22 and must leave. She is in a self-contained classroom and always has been.

So imagine my surprise when I received a phone call last week from a Navy recruiter. He asked if I was Jessica’s mother. I said yes. He then went into his recruiter spiel and I couldn’t get a word in because he was reading so fast from his script.

When he finally took a breath, I asked, “Have you met my daughter?” He said no, but that he was the recruiter assigned to her high school and was looking forward to meeting her. I asked, “Do you get any information about the students you are trying to recruit before contacting them, or do you just get a list of all student names from the school?” He said, “I get a list, and then I contact the students who are of age to recruit.”

I said, “Has it crossed your mind that some of the students you contact might not be qualified to enter the armed forces?” He said, “We work very closely with our recruits and are usually successful in helping them become the best they can be.”

I then described Jessica to him. This time I was the one not letting him get a word in. I told him of her background, of her challenges, of her sweet nature, of her desire to be, as he described, the best she can be. Finally I stopped, and then said, “Okay, now shall we discuss her recruitment?”

He was momentarily speechless, and then when he did talk, he stumbled all over his words. I decided to put him out of his misery, and suggested that perhaps in the future he might want to do a little more homework before contacting families.

I have always accepted Jessica’s challenges and love her for the person she is. But, I’ll bet there are some parents who are still saddened by dreams unfulfilled. Approaching such a parent with talk of Navy recruitment is just plain insensitive.

Today I am thankful for Jessica's tenancity.

Recovering

Ashley went back to school today for the first time in a week. She still has a bit of a cough, but other than that is back to her outrageous teenaged self.

I am slowly recovering also. I'm still on nebulizers every 4 hours - enough prednisone to bulk up any wrestler (Yes, I know it's not the same type of steroid :) - Tamiflu - antibiotics - and cough medicine. But, for the first time in a week, I am also starting to feel a little more human. I am even hungry tonight!

I promise to be back to my regular blogging schedule beginning Monday!

Today I am thankful for better living through chemistry!

Justice For All?

This was really hard for me to believe - Washington, D.C. - you know, the seat of our American government - the place where the Americans With Disabilities Act was passed - has NO wheelchair accessible taxi cabs.

But it's true. From the Washington Post on November 10th:

"Two taxi companies -- Yellow Cab and Royal Cab -- will put their first wheelchair-accessible vehicles into service in December, and the firms should have a total of 20 cabs that can handle wheelchairs in service by January.

The federally funded project, which the National Capital Region Transportation Planning Board initiated last year, also will receive matching funds from the D.C. Taxicab Commission. None of the District's current 6,500 taxis are equipped with a wheelchair ramp or lift. Most of the neighboring jurisdictions have accessible taxi service, including Arlington, Montgomery and Prince George's counties and Alexandria. "

Thanks for the heads up, Lucy!

Today I am thankful for the antivirus software on my computer which caught yet another nasty piece of malware today.

Special Exposure Wednesday

The evil H1N1 flu has hit our house...but at least Ashley was able to get some rest - even if it did require a thumb.



Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Today I am thankful that Ashley seems to be over the worst of the flu. One more day at home and then back to school.

Sick Ward

Sorry, but I will not be posting for a couple of days. Both Ashley and I have the swine flu, and it's all I can do to get up and sit at the computer - much less think of anything coherent to write.

Hopefully I will be back soon, but in the meantime, be sure to visit some of the special bloggers listed on the right side of this blog.

Today I am thankful for Tamiflu, Gatorade, Ibuprofen, cough drops and Puffs Plus tissues.

Social Services - Part 2

I left the social services office with a very heavy heart. I knew from my years as a police officer that a lot, a whole lot, of bad stuff happens to children. In fact, seeing so much of that was one of the reasons I decided police work could not be a career for me. But seeing it again at the social services office had no less of an impact than when I was an officer.

During the meeting with Corey’s social worker, she told me that the health department, just two buildings away, might have H1N1 shots available. My children have appointments this coming Monday for their shots, but I have not been able to find one yet. So, I decided to give the health department a try.

As I approached the building, I noticed a father and his twenty-something daughter also heading into the building. The daughter had some obvious physical disabilities – I would guess cerebral palsy – but she was able to walk, albeit very slowly and carefully, next to her father. The almost vacant, innocent look in her eyes and the expression on her face led me to believe that she also had cognitive impairments.

They entered the building ahead of me, and once greeted by the receptionist (and I use the term greeted very loosely), the father said, “My daughter, Louella, needs a flu shot.” The receptionist said, “We are only giving flu shots to pregnant women. Is she pregnant?” Louella’s father said, “If I say yes, can she get the shot?” The receptionist said, “Like I said, we are only giving shots to pregnant women.” Louella’s father said, “Well then, she’s pregnant.”

Louella seemed to find this exchange quite funny, and when she looked at her father and grinned, the room seemed to light up like the sun bursting forth after a week of rain. Her father returned her gaze and the love in his eyes seemed to say, “Don’t worry Baby Girl – Daddy will take care of you.”

The nurse was called to administer the shot. Louella stood very still and strong while her father wrapped his arm around her waist. He thanked the nurse when she was done, and I swear, if he had a hat on, he would have tipped it.

Louella’s father offered her his arm. She linked hers in his and they left the building. I knew I wasn’t going to get a shot that day, so I left after them. As they were walking back to their car, Louella’s father said, “I love you, Lou.” She looked at him and I knew he understood that she was communicating similar feelings.

As they pulled away in their car, I noticed their license plate. It read, “ILOVELOU”.

Today I am thankful that when my heart is heavy, God chooses to lighten it with a very special message.

Social Services - Part 1

I had to do one of my least favorite things in the world this week – go to our county social services office. Since I am Corey’s legal guardian (he is Native American and his tribe will not agree to an adoption – although they don’t want him either), I have to check in with social services every six months. They like to know that Corey is doing well and that he is still in school (I have to produce his report card each time). Plus, he gets to keep his Medicaid if I make the appointments.

The waiting room at the social services office is usually not a happy place. Many of the folks there are asking for monetary benefits and if things don’t turn out as they expect, they can get really angry. And they don’t mind sharing that anger with everyone within earshot.

I also usually see some young teenage girls – often very young – who are pregnant. I assume they are also there searching for benefits, but it saddens me to see them there alone, and then to imagine what their life and the life of their child will be like.

But my visit this week took the cake. The room was packed. My social worker told me later it has been that way ever since the economy took a nosedive. Into the crowded room walks a late twenty something woman, talking on her cell phone and yelling at the young child trailing behind her. She spots two seats, grabs the child (no more than a year old) by his arm and yanks him into a seat. She takes the other seat, and never once slows her cell phone conversation.

The baby is active – seemingly a typical one year old. He wants to explore – he wants a drink – he wants to be held. He communicates all this by whining through his pacifier and tugging on his mother. She alternates between ignoring him and hitting him.

He has a doughnut hole in his hand that he doesn’t seem to want. He drops it on the floor. The mother swoops it up and stuffs it in his mouth. A one year old….

She yells at him to stop whining. She tells the person on the other end of her phone call that the baby is ‘gonna get a whippin’.

Just as I can’t take anymore, a social worker calls the woman back into the office. The woman again yanks the baby by his arm and drags him along. She isn’t with the social worker more than five minutes, and then I see them leaving – the mother with her phone call reestablished, and the baby trailing behind.

It’s then time for my appointment. I share my observations with the social worker. She shakes her head, and I am left to wonder if anything will be done. I doubt it.

Part 2 tomorrow….

Today I am thankful that I had several wonderful mentors when I first became a mother.

Special Exposure Wednesday

Our cats were thrilled as usual to see Halloween roll around again. Can't you tell from the looks on their faces? Say 'hello' to LobsterCat and ChickenCat!





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

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.

Working Miracles with Sight and Hearing

As the parent of a deafblind child, I guess I should be angry that Abigail Breslin has been cast to play the role of Helen Keller in the Broadway show The Miracle Worker. At least that is what the group, Alliance for Inclusion in the Arts, is telling me. AIA wants a deafblind actress cast in the role, saying that a deaf or blind actress would be able to imbue the role of Helen with her experience.

But isn't that what actresses do? Ms. Breslin is an accomplished actress. I would expect that she would thoroughly research her role, and I believe would do a fine job of portraying Helen Keller. In fact, one of my favorite versions of The Miracle Worker has Hallie Kate Eisenberg as Helen. I liked that version even better than the one with Patty Duke, who as we know is not deaf or blind.

I'm amazed at how many news stories I have run across in the last week about the Alliance for Inclusion in the Arts and their vehement objections. I'm all for diversity in every aspect of life but really, aren't there more important things going on in the world right now?

Prayers Desperately Needed

One of my favorite bloggers, Attila the Mom, needs your prayers desperately. Attila's oldest son, 20-something Big Kid, is teetering on the edge of life and death due to complications from H1N1. Big Kid was healthy - no underlying health conditions. Everyone thought he just had a cold, but in less than 24 hours, the unimaginable happened.

Please take a few moments to read her posts about this, and then please, please keep Big Kid in your prayers.

There are many reasons why I am so desperate to get the H1N1 vaccine for my children, but no reason more compelling than Attila's story..

Hold on, Attila, and know that you and Big Kid are in my thoughts and prayers constantly.

Today I am thankful that Big Kid is fighting hard. Damn you, H1N1

Am I Missing Something?

Although I have pretty much given up on my school district providing an education for Ashley, some of the school staff are trying, and I do appreciate that. At the beginning of this current school year (Ashley's first year in high school), two folks from our state's deafblind project visited the school and did a training for the school staff. I'm really hoping that helped because usually teachers and other staff just don't get the whole deafblind thing.

For example, Ashley's 2nd grade teacher came to an IEP meeting and in all seriousness said, "Ashley is a visual and auditory learner."

Still, I give this year's staff credit for trying harder than staff in the past.

However, one of the things that someone, perhaps the speech therapist, is working on with Ashley is getting her to sign jokes. I'm not sure of the reason why - perhaps to fit in with her peers more or maybe to work on some more signs - I'm just not really sure. But, at the end of the school day, the jokes come home written out on a piece of paper, and attached to the joke paper is a page with pictures of the signs that were used.

This week's joke was, "knock knock - who's there? - train - train who - train makes the flowers grow".

I get it - train - the rain - but let's think about this from Ashley's perspective.

She can't hear - she's deaf. The whole point of the joke is hearing the sound of the word train. So sure, she can sign all the words - but it makes no sense to her.

I wonder if the school staff understands why she is not laughing.

Today I am thankful that tomorrow is Friday :)

Special Exposure Wednesday

It's that time of year again - falling leaves, cooler temps, and trips to the Pumpkin Patch. Look closely and you might see Mickey Mouse!





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

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'!

Paranoid Momma

I had to take Ashley to the doctor yesterday. I didn’t know if she had the flu or something else, but she definitely needed to be seen. In fact, I probably should have taken her a day or two sooner, but I have an all-consuming fear of doctor’s offices and sick people this year.



I’m sure it’s the H1N1 virus and all the media attention it is garnering. And now the President has declared a state of emergency over the flu. How can a mother not obsess?

Ashley and I both had the seasonal flu last year. She and I both had the seasonal flu shots – like we do every single year – but we still contracted the virus. We both also took Tamiflu, and while it may have lessened the symptoms and duration of the flu, we were still both in bed for a week – not just sitting around feeling miserable – in bed.

I was administering round-the-clock nebulizer treatments to Ashley. She had stopped eating so we had to go back to pushing fluids through her G-tube, and I had to sleep in her room each night just to make sure I heard her still breathing. It was a miserable time and I absolutely do not want to go there again.

This year, however, protection against H1N1 is little more out of my control. Sure, I can insist everyone wash their hands and use hand sanitizer frequently. I can tell them to cough and sneeze into their elbow, and suggest they stay away from obviously sick people. But I can’t get us the H1N1 vaccination. There just isn’t enough to go around.

Why is that? Government agencies have been talking about pandemic flu for a long time. My agency, in fact, has had a pandemic flu plan in place for two years. We knew last Spring that H1N1 was here and would be getting worse. Why didn’t we do something to ensure enough vaccine? I haven’t heard any good answers to that question yet. Have you?

Oh, and for the record, Ashley did not have the flu yesterday. Her test came back negative. She does, however, have a sinus infection, and as far as I know, there are no vaccines for that yet!

Today I am thankful that I was able to borrow another computer. Ashley, you see, doesn't have the H1N1 virus, but apparently my computer does!

Visiting the Cemetery in October

I’m so excited that Ashley is going to the cemetery today for her class’s CBI (Community Based Instruction) trip. I know that sounds strange, but stick with me for a moment and I promise it will make more sense.

I’ve always had a problem with the types of CBI trips set up by Ashley’s special education teachers. The trips were usually of two types – bowling or a trip to the mall. Both those trips could have been structured in such a way that they could be educational, but usually they were not. Especially around the holidays – teachers loved the mall trips so they could get their Christmas shopping done.

However, today’s CBI was to Hollywood Cemetery, a beautiful, very historic place overlooking the James River in Richmond. Hollywood Cemetery is like a living history book. Well, I guess ‘living’ is not quite the right word, but hopefully you get my point.

In 1700, the first person was buried in Hollywood Cemetery. Presidents James Monroe and John Tyler are buried there as are a host of people who played primary roles in the shaping of Virginia and the Southern States. There is a monument to soldiers who died in the Civil War and who are buried nearby. Edgar Allen Poe’s teacher, family dynasties such as the Valentines (patrons of art and music) and the Haxalls (the world’s leading flour millers), philanthropist James Thomas, and university presidents Robert Ryland and George Modlin are all buried in Hollywood Cemetery. Scholars, iron makers, Antebellum editors, Governors and Confederate officers round out some of the historical people buried there.

When Ashley’s IEP team and I were finalizing her IEP for this school year, I remember a statement from one of the school staff when I proposed some history goals for Ashley – “We’re not doing history this year. This is a science year.” I’m not reminding anyone of that statement, but today’s CBI sure seems like a history lesson to me!

Today I am thankful that things don't always turn out as badly as you think they will.

Tell Me Your Secrets

I need to know your secrets – you parents who always have beautiful pictures of your children on your blogs. So many of you have cute pictures of your children looking into the camera, smiling, their hair just so, their clothes clean. How do you do it??

I must have thousands of pictures of Ashley taken over the last 12 years. The only really, really good ones are the ones taken by professionals. But you all post so many candid shots, shots which it appears you have taken in your home, in your yard, on vacation, etc.

And don’t even get me started on school pictures. I buy them every year because I would feel like a bad mother if I didn’t. But almost all of those pictures are ugly – really ugly. Now, Ashley is beautiful but somehow the school photographers turn her image into something not so beautiful.

I’m very grateful for the pictures my brother (a professional photographer) has taken over the years. I’m very grateful for the pictures taken by a friend of Amy’s (also a professional photographer). Two examples are shown below. And I’m very grateful for the pictures that Amy and my son, Chip, take of Ashley. Many of them have turned out well.



But then there are the ones I take, like this one....



Ashley is strangling the cat - the picture is blurry - and a random foot is at the top of the picture.

I really want to be able to create a lovely image of my lovely daughter. So tell me your secrets, please…

Today I am thankful for digital cameras. I can’t even imagine what it would cost to develop the hundreds of pictures I take just to get one or two passable ones.