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:

Rhapsody

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.