Wednesday, December 23, 2009

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!

Tuesday, December 22, 2009

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

Monday, December 21, 2009

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.

Sunday, December 20, 2009

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!

Friday, December 18, 2009

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.

Thursday, December 17, 2009

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!

Wednesday, December 16, 2009

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!

Tuesday, December 15, 2009


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!

Monday, December 14, 2009

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.

Friday, December 11, 2009

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.

Thursday, December 10, 2009

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.

Wednesday, December 9, 2009

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!

Tuesday, December 8, 2009

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…..

Monday, December 7, 2009

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, December 4, 2009

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:


Enjoy and do something fun this weekend!

Thursday, December 3, 2009

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.

Wednesday, December 2, 2009

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!

Tuesday, December 1, 2009

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