Most of the time I can figure out why my kids do some of the strange things they do. But this one I just can't.
Yesterday morning, I went to wake Ashley. It was still pretty dark - I was still half asleep - and at first glance all I saw was the green of her sheet. I looked around her room and couldn't find her. I started to panic but glanced again at the bed. I saw a lump under that green sheet!
Ashley had pulled all the covers off her bed, and then crawled up under the fitted sheet.
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
"One can never consent to creep when one feels an impulse to soar." - Helen Keller
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Dear Doctor
After four trips to three different doctor’s offices this past week, I have decided that most doctors’ offices are seriously in need of a redesign. And, they need to consult with us parents of children with special needs when doing the redesign.
For example, just separating one large room into two by using a row of chairs does not a sick and not-sick waiting area make. If you truly want to separate the children who are sick from the non-sick, two separate rooms, each with their own door, are needed.
If you wish to supply toys for the children while they wait, you need to follow daycare toy rules – wash them every evening in a bleach water solution – don’t include any soft toys like stuffed animals – and definitely consider that there may be children with vision and hearing impairments, autism, and other sensory issues. Also keep in mind that there may be children from infants to teens. My teen daughter really has no interest in your shape sorter toy.
It’s very nice if the office has automatic entry door (although most don’t), but what about all the other doors? Those of us with children in wheelchairs or walkers still have to perform acrobatics to get your exam room doors open or your bathroom doors open. And yes, most of you now have accessible bathrooms, but please consider that some childhood wheelchairs are huge, and that sometimes two adults are required to accompany a child to the restroom. Please make sure there is enough room for all the people and all the equipment.
If you supply books and magazine, please understand that many of our children with special needs love to tear paper. If you have a particular book or magazine that you cherish, don’t put it in the waiting room or the exam room. And about those exam rooms – I have yet to find one big enough to accommodate my child, her chair, her equipment, me, and another adult. As soon as I walk into the exam room, I turn into a furniture mover.
Also, I understand that many of the exams doctors perform require that a child lie on an exam table. But I can no longer lift my 14 year old daughter onto the table. If you really need her up there, we’ve got to come up with another idea, or at least 4 strong people.
I love my daughter’s doctors. They are some of the nicest, most caring people I have ever met, and I know they have my daughter’s best interest and optimum health at heart. But let’s not forget the practical side to caring for children with special needs…
Sunday, September 27, 2009
For Azaera
Azaera asked me for two things last week, and I am honored to oblige :)
First, I had mentioned in my Thankful Thursday post that I loved dinners that could be prepared in under 30 minutes. Azaera asked me to share some recipes. Well, here's the first - super simple and quick meatloaf muffins:
You will need 1 box of Stove Top Stuffing Mix - any flavor will do, 2 eggs, 1 cup of water, and 2 pounds of ground beef or turkey. Just mix all the ingredients together and fill 12 muffin tins with the mixture. Make sure to coat the muffin tins with cooking spray first, especially if you are using turkey. Bake at 350 degrees for approximately 30 minutes.
With the muffins, I serve boiled new potatoes - no need to peel them - just chop, boil, drain and season however you like. Our favorite is salt, pepper and some chopped fresh chives from our herb garden. For something green, I steam brocolli in the microwave - that way it keeps more of its good vitamins. And then if your family is like mine and always wants bread of some sort with dinner, I serve leftover biscuits or store bought rolls.
Azaera, I'll post more in the near future!
Azaera's second request was for some more pictures of Ashley. Ok, well just twist my arm!! Here are some that were taken over the summer:
First, I had mentioned in my Thankful Thursday post that I loved dinners that could be prepared in under 30 minutes. Azaera asked me to share some recipes. Well, here's the first - super simple and quick meatloaf muffins:
You will need 1 box of Stove Top Stuffing Mix - any flavor will do, 2 eggs, 1 cup of water, and 2 pounds of ground beef or turkey. Just mix all the ingredients together and fill 12 muffin tins with the mixture. Make sure to coat the muffin tins with cooking spray first, especially if you are using turkey. Bake at 350 degrees for approximately 30 minutes.
With the muffins, I serve boiled new potatoes - no need to peel them - just chop, boil, drain and season however you like. Our favorite is salt, pepper and some chopped fresh chives from our herb garden. For something green, I steam brocolli in the microwave - that way it keeps more of its good vitamins. And then if your family is like mine and always wants bread of some sort with dinner, I serve leftover biscuits or store bought rolls.
Azaera, I'll post more in the near future!
Azaera's second request was for some more pictures of Ashley. Ok, well just twist my arm!! Here are some that were taken over the summer:
Friday, September 25, 2009
Circle of Friends
Ashley came home from school yesterday with some artwork that she and a student in regular ed created together. With it was a note explaining that the regular ed student was one of the 'Circle of Friends' club at the high school.
I had heard about Circle of Friends from my son who recently graduated from this high school, and I had heard from other parents. Although comments have been mixed, the majority have been positive, and the existence of this club was one of the reasons I chose to send Ashley to this high school.
Regular ed students join Circle of Friends as an extracurricular activity, similar to joining the Spanish Club, for example. When the students have study hall, or sometimes before and after school, they will volunteer in the special ed classrooms. I'm really hoping these students will help bring Ashley the social experiences that most high schoolers find.
As I wrote earlier this month, I've pretty much given up on expecting my school district to provide an actual education for Ashley, but I haven't given up on the social aspect that school can provide. So far, it seems we are on the right road for that, and I will be keeping my fingers crossed that it can continue.
Does your child's school have a similar program?
Thursday, September 24, 2009
Thankful Thursday
Today I am thankful…
- for flu shots. I know they don’t always keep me from getting the flu, but each year I’m hoping that will be true.
- that Dancing With The Stars and **MAKS** are back on tv
- for good books that keep me up too late at night
- for dinners that can be made in less than 30 minutes and still taste good
- that the lovely Miss Brooke is feeling better
- that Ashley has been sleeping pretty well for the last few nights
- for Dr. Wright, Ashley’s pediatrician. She is so thorough, so nice, and so very caring of children with special needs
- for Jessica’s person centered planning team. It warms a mother’s heart to know that other people care so much for your children
Wednesday, September 23, 2009
"Gotta Love This State I Live In", she said sarcastically
I love living in the South. And I've always loved many of the things my home state has to offer. Then something like this comes along and sends my blood pressure off the charts...
Hopes For Group Home Dashed
A community service board in Northern Virginia dropped plans to set up a group home, pictured on the right, for adults with intellectual disabilities after neighbors complained vehemently to the local board of supervisors.
The Rappahannock-Rapidan Community Services Board (RRCSB) had proposed converting a foreclosed home in a rural neighborhood into a supervised group home for a handful of adults with developmental disabilities who had no criminal backgrounds.
Members of the neighborhood voiced concern that a group home would lead to decreased property values, compromised neighborhood safety, a violation of neighborhood covenants, lost insurance coverage, and safety problems for the residents with disabilities.
This newspaper editorial was excellent however.
I just cannot believe this cr*p happens. OK, yes I can, but I don't want to believe it.
Tuesday, September 22, 2009
The Birds and the Bees
My daughter, Jessica, is 18 years old and wants a boyfriend. Problem is – I’m not sure she understands what that means.
I’ve tried through the years (I adopted her at age 9) to explain the birds and the bees in a way that her significant cognitive impairment could understand. But, I never felt like I was getting through. Combine that cognitive impairment with the very real possibility that she was sexually abused while in the foster care system, and sex ed did not come easily.
But it’s time to figure out something. Jessica is an adult and wants to enjoy things that all adults enjoy, including the companionship of another adult. I believe she has a right to a sexual relationship if that is what she desires, but at the same time, I believe she needs to be taught what that means.
So several other members of her Person Centered Planning team and I went in search of resources. What we found is called Life Horizons. It is a two part, full curriculum which addresses sexuality.
The first part talks about the Physiological and Emotional Aspects of Being Male & Female. We previewed the CD yesterday, and it is graphic, but not graphic in a salacious way. And since it is presented as slides (no live action), slides which may not be appropriate can be skipped. The second part includes sections on Building Self-Esteem & Establishing Relationships; Moral, Legal & Social Aspects of Sexual Behavior -- Male; Moral, Legal & Social Aspects of Social Behavior -- Female; Dating Skills & Learning to Love; Marriage & Other Lifestyles; Parenting; and Preventing or Coping with Sexual Abuse.
It’s a lot of information, information which cannot be covered in one sitting. But, it appears to be very comprehensive and exactly what Jessica needs and wants. I will keep you posted as we start through the program, but I am curious as to what you think now.
Are you a parent who has had to struggle with this issue, and if so, what did you do? And, do you feel it is important, even critical, to educate a person with a significant cognitive disability on these matters? How have you responded to questions about dating, marriage and sexuality? What advice do you have for me as I undertake this journey with Jessica now, and Ashley later?
Monday, September 21, 2009
An Unplugged Vacation
Even though it's just September, I've been thinking about how my family will spend its Christmas vacation. Christmas is a great time for me to take some time off from work. Most of my coworkers take their vacations in the Summer. And, since there are two holidays almost back to back, I can get at least a week off and only use a few days of my vacation time.
Last year we didn't actually go on a vacation, but rather took day trips around our state. This year, though, we're going to try a vacation, and not just any vacation, and 'unplugged' vacation.
So what does that mean? It means a mountain cabin with no TV. no Internet, no video games, and no cell phones. It means family time - time spent walking through the woods, watching for wildlife, playing board games, sleeping when we feel like sleeping, building a fire in the fireplace, and just enjoying each other's company.
I'm not sure it will really turn out to be the Walden Pond I have pictured in my mind, but I'll never know if I don't try.
So this past weekend we visited the state park where our rental cabin will be. The park was beautiful! We enjoyed a picnic lunch next to a large lake and then went and peeked in the windows of some of the cabins. Fortunately, they were not quite as primitive as I was expecting.
We have rented a three bedroom, two bath, handicapped-accessible cabin. It has a full kitchen and a fireplace. It is, however, tucked deeply into the forest. It's a little frightening but exciting also. I'm keeping my fingers crossed that everyone will stay well, and our adventure will actually happen. If anyone has any suggestions for surviving an 'unplugged' vacation, I would love to hear them.
If we pull this off, it will be nothing short of amazing considering my sons are "plugged" in constantly!
Last year we didn't actually go on a vacation, but rather took day trips around our state. This year, though, we're going to try a vacation, and not just any vacation, and 'unplugged' vacation.
So what does that mean? It means a mountain cabin with no TV. no Internet, no video games, and no cell phones. It means family time - time spent walking through the woods, watching for wildlife, playing board games, sleeping when we feel like sleeping, building a fire in the fireplace, and just enjoying each other's company.
I'm not sure it will really turn out to be the Walden Pond I have pictured in my mind, but I'll never know if I don't try.
So this past weekend we visited the state park where our rental cabin will be. The park was beautiful! We enjoyed a picnic lunch next to a large lake and then went and peeked in the windows of some of the cabins. Fortunately, they were not quite as primitive as I was expecting.
We have rented a three bedroom, two bath, handicapped-accessible cabin. It has a full kitchen and a fireplace. It is, however, tucked deeply into the forest. It's a little frightening but exciting also. I'm keeping my fingers crossed that everyone will stay well, and our adventure will actually happen. If anyone has any suggestions for surviving an 'unplugged' vacation, I would love to hear them.
If we pull this off, it will be nothing short of amazing considering my sons are "plugged" in constantly!
Friday, September 18, 2009
News - Both Good and Bad
Electric Cars Present Hazard for the Blind
I would love to own an electric car – some little sporty model that got zillions of miles to the gallon of gas. But, because I am the mother of a child who is blind, my concern for her safety outweighs my desire for a ‘green’ vehicle.
Electric cars are quiet. So quiet that my daughter would not hear one coming as she was trying to cross a street. But the Nissan Leaf, a concept car, seems to be addressing that issue. Blade Runner is one of my favorite movies, and with the Leaf, I can feel like I am in the movie!
Repulsive New Movie and the Bus that Endorses It
Another movie along the lines of Tropic Thunder is being released. I Hope They Serve Beer In Hell will be known for such offensive taglines as “deaf girls can’t hear you coming”, “blind girls can’t see you coming”, and “strippers will not tolerate disrespect (just kidding)”.
However, even worse than the movie is the fact that the Chicago Transit Authority prominently displayed these tag lines on their buses. Once it was brought to their attention, the CTA removed the signs, but come on, how could anyone at CTA think it was ok in the first place?
Nokia Makes Texting Easier for the Blind
Ashley will be very glad to hear about this! Nokia is testing a cell-phone application that will provide Braille transcription for a cell phone text message. The application is already available for download, and Nokia wants feedback.
Finally Friday
This has been a very long week, and I am THRILLED that it is finally Friday. I decided to celebrate with my two young friends here who also understand the joy this 6th day of the week brings!
Thursday, September 17, 2009
Thankful Thursday
Today I am thankful…
- that I got my lettuce and spinach seeds planted and am starting to see some tiny little shoots of plants. I’ve never planted a Fall garden before, so this ought to be interesting.
- that Ashley seems to be feeling much better as she recovers from her most recent ear infections.
- that when an old school friend posted something on Facebook yesterday about short school buses and students with disabilities which offended me, he removed it once I brought it to his attention.
- that my most recent post on 5 Minutes For Special Needs about holding hands with your teenager with a disability generated so much thoughtful commenting. We didn’t all agree by any stretch of the imagination, but we all discussed respectfully.
- that it is Thursday – which means tomorrow is Friday – which means only one more day to the weekend! (not that I am anxious or anything)
- that it is almost soup season again. I can wait to cook up a crockpot full of a warm, hearty soup on a call Fall day.
- that Corey finally got his hair cut
- that Jordan won the ½ million on Big Brother and that Luke chose Tali on More To Love
Wednesday, September 16, 2009
Special Exposure Wednesday
Hey, Mom - can we get one of these bubbly water things, can we, huh, can we????
Bes ure to check out all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs!
Bes ure to check out all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs!
Tuesday, September 15, 2009
High-Tech Glasses Help Visually Impaired See
I read several stories each week from people and companies who claim to have invented a device to help people with vision impairments. In fact, a company that claims its pinhole glasses are effective for restoring vision asked me to review their product a while back. I did, and never heard from them after that. (Surprise, surprise!). But, one story I read this week did pique my interest.
An Ottawa company is developing computerized glasses that help people with severe visual impairments see — as well as zoom in on and replay what they saw with the press of a button.
The device, which resembles a pair of large sunglasses, has a high-resolution camera on the outside and tiny LCD screens on the inside that project images to the wearer's eyes.
Before the image is projected, it's custom-processed by a tiny computer, said company president Rob Hilkes. "So that when it's presented to a person who has diseased eyes … it's presented to the pieces of their vision that are most functional," he added.
Réjean Munger, a senior scientist at the Ottawa Hospital Research Institute who helped develop the glasses, said that can help people with a variety of diseases. "We can take advantage of every bit of vision they have," he said.
The company hopes to start commercial production next year.
Anne Lewis, who is legally blind as a result of Stargardt's disease, has been testing the prototype and is very excited about it. "I see this product as a gift; I truly do," she said at the news conference announcing the funding.
Lewis is the sister of Conrad Lewis, eSight's chairman and one of the company's founders, and her disability was the inspiration for the glasses. Stardgardt's disease is a form of macular degeneration that has destroyed Anne Lewis's sight except for her peripheral vision. "It's like looking at a bubble and the inside of the bubble is black, the outside is clear," she said.
Lewis said using the glasses will allow her to read body language in meetings at work, stand on her deck and see flowers blooming, navigate shopping malls and flag down the right bus. Unlike other products she has tried, it works even while she is moving.
The product is expected to be able to help people with age-related macular degeneration, diabetic retinopathy, glaucoma and retinitis pigmentosa.
I found a website for the company, but there is not a lot of information posted yet. But I will definitely be checking back. This is the best application of technology that I have heard about in a long time for people with visual impairments.
Monday, September 14, 2009
Doing It Ourselves
When Ashley was in 3rd grade, I contracted with Dr. Harvey Mar from Columbia University to do an independent evaluation of Ashley. Dr. Mar is recognized as an expert in the field of educating children with deafblindness. Leading up to Dr. Mar's evaluation was my school district's evaluation which said Ashley was a visual and auditory learner (say what??), and then an independent evaluation by a psychologist of the school district's choosing. And all these evaluations were leading down the path to due process.
Both the school's psychologist and Dr. Mar pointed out how much Ashley loved working on computers, and both recommended that her curriculum be computer-based. Remember - this was in the 3rd grade.
4th and 5th grade passed by without a computer in sight. In middle school in our school district, every student is issued a laptop computer (assuming the parents pay a $50 insurance fee). Ashley's fee has been paid every year, and every year passes without any significant computer time for her.
Now she is in high school, and still she loves the computer - perhaps even more than ever. Still she has a school-issued laptop, and still there is no mention of a computer-based curriculum.
So, I have given up.
I will make sure that she has the computer-based curriculum she needs, a need recognized when she was just 8 years old. But I will do it at home.
Pictured is Ashley's new learning center. She has a computer which can have the fonts enlarged as much as she needs. She has Internet access to go to the web sites that interest her and that we need for 'homework'. And, even though she spends 7 hours a day at school, her real education will be coming after that and on the weekends at home.
Both the school's psychologist and Dr. Mar pointed out how much Ashley loved working on computers, and both recommended that her curriculum be computer-based. Remember - this was in the 3rd grade.
4th and 5th grade passed by without a computer in sight. In middle school in our school district, every student is issued a laptop computer (assuming the parents pay a $50 insurance fee). Ashley's fee has been paid every year, and every year passes without any significant computer time for her.
Now she is in high school, and still she loves the computer - perhaps even more than ever. Still she has a school-issued laptop, and still there is no mention of a computer-based curriculum.
So, I have given up.
I will make sure that she has the computer-based curriculum she needs, a need recognized when she was just 8 years old. But I will do it at home.
Pictured is Ashley's new learning center. She has a computer which can have the fonts enlarged as much as she needs. She has Internet access to go to the web sites that interest her and that we need for 'homework'. And, even though she spends 7 hours a day at school, her real education will be coming after that and on the weekends at home.
Friday, September 11, 2009
No LOOK For Me
How many of you took your child with disabilities shopping for school clothes recently? What would you have done if the store in which you were shopping clearly discriminated against your child, and even embarrassed him/her because of their disability?
I bet you would do the same thing that Molly Maxson’s mother did – raise a huge, gigantic stink about it. I know I would.
Molly was shopping with her sister at Abercrombie and Fitch, an extremely popular store for teenagers who want the latest ‘look’. Molly has Autism and needed her sister’s help in the dressing room to try on clothes. Abercrombie and Fitch refused to let Molly’s sister help her, citing problems with shoplifting and a store ban on more than one person in a dressing room. Molly was further humiliated by having to listen to her mother and sister continually ask for accommodations while other customers were standing around.
Molly has been vindicated and Abercrombie and Fitch was fined $115,000 for their actions. But this wasn’t the first time the clothing retailer showed its true colors regarding people with disabilities.
Riam Dean was a shop assistant at Abercrombie and Fitch in London. Riam, who was born with her left forearm missing, claimed she was forced to work in the stockroom of the US firm's London store because she did not fit its strict "look" policy. Miss Dean also won her lawsuit against the company.
It goes without saying, at least for me, that we will NEVER be shopping at Abercrombie and Fitch, and I will strongly encourage everyone I know to follow our lead. How about you?
Thursday, September 10, 2009
Thankful Thursday
Today I am thankful…
- that I was not one of the almost 600 state employees that were laid off this past Tuesday
- that so far, the employees who remain working for the state will only have to take one furlough day (without pay). Of course, that only covers this year. We have been told to expect worse next year and the year after.
- that Ashley has done ok with this first week of school. I’m not sure if she is learning anything, but at least she has been happy and uninjured.
- that I am having lunch with my college student son, Chip, today
- that Ashley’s black eye is starting to look a little better
- that Maks, from Dancing With The Stars, came to his senses and ended his engagement to Karina. I’m still available, Maks….
- for all the work I got done around the house last week, especially cleaning out all the closets. Wonder how long they will stay looking neat?
- that it is finally getting cool enough to enjoy a cup of hot tea in the morning
Wednesday, September 9, 2009
Special Exposure Wednesday
We visited the Lewis Ginter Botanical Gardens last Sunday, and one of our favorite areas is the Children's Garden. This is a 'planting' that greets us at the entrance - I love it! (You can click on the picture to see a larger image)
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Tuesday, September 8, 2009
Shiny New - New Shiner
It's the first day of school, and Ashley is ready:
New clothes - Check
New backpack - Check
New lunchbox - Check
New shiner so the school staff will be convinced that I abuse my child - Check
(Really, I don't abuse my child. She was playing with one of our cats under the kitchen table. The cat ran away - Ashley tried to sit up - and whack! - hit the edge of the wooden table. Darn that being blind...)
New clothes - Check
New backpack - Check
New lunchbox - Check
New shiner so the school staff will be convinced that I abuse my child - Check
(Really, I don't abuse my child. She was playing with one of our cats under the kitchen table. The cat ran away - Ashley tried to sit up - and whack! - hit the edge of the wooden table. Darn that being blind...)
Monday, September 7, 2009
Flutterbies
Ashley loves butterflies. She has butterfly pictures - butterfly books - and butterflies on her clothes. So the 'Butterflies Live" exhibit at our local botanical gardens seemed tailor-made for her.
We visited the gardens this past weekend. The day was bright and sunny and a tad on the warm side. But, we arrived at the gardens just as they opened, and went immediately to the Conservatory, the home of the butterflies.
Just entering the Conservatory was interesting. We had to go through one set of doors, and wait in a small area until the door through which we had entered was closed. Then, the door into the Conservatory was opened. All this was done so that the butterflies wouldn't escape. Signs were posted everywhere asking that visitors watch where they walked so the delicate butterflies wouldn't be crushed underfoot. And, before we left, we had to do a butterfly check of our clothes!
But once inside, the experience was amazing! Butterflies were flying all around, often just inches from our faces. Butterflies were also perched on fruit that had been left for them, and one the many plants in the Conservatory. Needless to say, Ashley was in heaven. She even wore her favorite butterfly shirt to celebrate the visit!
Our trip was a wonderful exclamantion point to the end of summer! Check out the incredible pictures taken by my son, Chip...
We visited the gardens this past weekend. The day was bright and sunny and a tad on the warm side. But, we arrived at the gardens just as they opened, and went immediately to the Conservatory, the home of the butterflies.
Just entering the Conservatory was interesting. We had to go through one set of doors, and wait in a small area until the door through which we had entered was closed. Then, the door into the Conservatory was opened. All this was done so that the butterflies wouldn't escape. Signs were posted everywhere asking that visitors watch where they walked so the delicate butterflies wouldn't be crushed underfoot. And, before we left, we had to do a butterfly check of our clothes!
But once inside, the experience was amazing! Butterflies were flying all around, often just inches from our faces. Butterflies were also perched on fruit that had been left for them, and one the many plants in the Conservatory. Needless to say, Ashley was in heaven. She even wore her favorite butterfly shirt to celebrate the visit!
Our trip was a wonderful exclamantion point to the end of summer! Check out the incredible pictures taken by my son, Chip...
Friday, September 4, 2009
Kindled?
I wrote last April about protests over the Amazon Kindle and the fact that some authors did not want the text to speech feature enabled for their book. As the parent of a child who is blind, that struck a nerve with me. Combine that with the fact that I'm not sure I could read a book without actually turning paper pages (reading to me is all about the experience and that experience involves paper), and buying a Kindle has never been something I have considered.
However, my college-age son did buy one, and reluctantly I must admit, I like it. Do I like it enough to give up turning paper pages and dustcovers? Probably not, especially since I can go to the library and get books for free rather than paying $10 each time I want to read a new book, but I am going to give it a try.
The first book I wanted to try on the Kindle was Jonathan Mooney's The Short Bus. I wrote several times in 2007 about Jonathan's book, and it is still one of my favorites. Of course, that has nothing to do with the fact that one of the chapters (Chapter 7 to be exact) is devoted to my lovely Ashley!
And I've got to admit that seeing that chapter, and Ashley's name, emblazoned on the Kindle did make me smile!
Tell me, have any of you bought a Kindle, and what are your experiences and thoughts?
Thursday, September 3, 2009
Thankful Thursday
Better late than never I always say...Today I am thankful...
- for friends like Sara who came to stay with Ash so I didn't have to take her with me to Jessica's Social Security office appointment
- that I got three closets cleaned out today!
- for a house with plenty of closet space!
- that dinner is cooked and waiting in the crock pot - barbecued country style pork ribs
- for the lovely cool mornings we have had this week. I've been able to open the windows and hear the birds singing
- that Ashley has been letting me sleep about an hour longer the past three mornings. I feel like a new woman!
- that Chip is starting to settle into college life
- for the very long weekend I am taking - I am off from work from Wednesday of this week through Monday of next week
Hope you are all having Thankful Thursdays too!
Wednesday, September 2, 2009
Special Exposure Wednesday
In the beginning, the universe wasn't well formed...
But then with the aide of a young girl, the planets began to align....
Until finally, the universe was at peace :)
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
But then with the aide of a young girl, the planets began to align....
Until finally, the universe was at peace :)
Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!
Tuesday, September 1, 2009
How Not To Run A Group Home
This past Saturday, I made a trip to Jessica's group home to take her some new school clothes and school supplies. What I found when I arrived was more than appalling. I thought the best way to share my observations would be to let you read the letter I have written to group home managment and copied to our state's licensing organization. When I get responses, I will share those also.
(The picture is not of Jessica's bathroom, but the problem was very similar)
August 31, 2009
Ms. Group Home Manager
Group Home Company
Dear Ms. Group Home Manager:
As I mentioned to you on the phone this morning, I visited your children’s group home on Saturday, August 29, 2009, and was quite disturbed about the condition in which I found my daughter’s bedroom and bathroom. In addition, I noted several other things in the general living area of the home that I believe need to be addressed. I have listed my concerns below:
- When I arrived at approximately 10:00 am, my daughter, Jessica, was sitting on her bed clothed in shorts and a tee-shirt. I noticed that there was vomit in her bed, and that she smelled both of vomit and general body odor. I asked her if she had vomited in her bed, and she said she had, when she had been sleeping. I also asked her if she had taken a shower either the previous night or that morning, and she said she had not. I asked her to remove the sheets from her bed, and I went to inform one of the two staff members present that Jessica had vomited in her bed. At that point, the staff member who had been cooking breakfast came to Jessica’s room and took the soiled sheets away. The other staff member remained sitting on the couch in the living room.
- When the bedding was removed from Jessica’s bed, I noticed that the plastic mattress cover was in shreds, obviously providing no protection for the mattress. Since Jessica is often incontinent, I believe more attention should be paid to having the appropriate plastic cover on her mattress. Due to the type of plastic covering on the mattress, Jessica was unable to remove it. The staff member did not remove it when she took the bedding away.
- Jessica’s room is carpeted but there is also a small area rug on top of the carpet. That area rug was not lying flat on the floor, and Jessica tripped over it twice while I was there. Also, the mat in her bathtub and the mat on her bathroom floor were similarly bunched up, and appeared to be a danger to Jessica considering she does drag her left foot.
- Also in her bathroom, I noticed that the bathtub hand rail used to assist Jessica in getting into and out of the bathtub, was covered in mold. Sitting on that rail, and touching the mold, was Jessica’s toothbrush.
- I began to clean out and sort the clothes in Jessica’s closet. While doing so, I noticed many gift bags such as one would receive at holiday celebrations (Valentine’s Day, Easter, Christmas) filled with candy. Obviously the candy had been there for quite a long time. I also found similar bags of candy on her dresser. I am concerned that the presence of candy for such a long time would draw either insects or rodents.
- Jessica’s entire room, in my opinion, had not been thoroughly cleaned in a very long time. Inside the lamp in her room, was a thick layer of dead bugs and dust. The tops of her dresser and other furniture in her room was covered in dust and sticky substances, her carpet was very stained and appeared to not have been vacuumed in a long time, and her windowsills were thick with dust and dirt.
- On that morning, the temperature was approximately 85 degrees at 11am. The air conditioner in the home was not on. Rather, Jessica’s windows were open as were several other windows in the house.
- Sitting in Jessica’s open windowsills were a can of Lysol and a can of Pledge.
- As I was leaving the group home, I also noticed that the medication closet was unlocked.
As you and I discussed, it would be ideal if Jessica was able to completely care for her room, clothes and bedding. I fully support and expect that she will play a role in those tasks, and believe they are part of her plan of care. However, given her level of intellectual disability, the fact that she only has use of one hand, and her emotional instability at times, I believe it is unrealistic to think that Jessica is capable of maintaining those things alone. Also, given the fact that the group home company decided to move the children’s group home from the West End of my city, a location that was just 5 minutes away from where I live, to the far East End, a 40 minute drive away from my home, and understanding that I also have another child that is medically fragile, it is not realistic to expect me to be at the group home often enough to maintain a level of cleanliness in Jessica’s room and bathroom. In fact, given the amount of money that the group home company receives for Jessica’s care both from Medicaid and from me, I would expect a higher level of attention to cleanliness and care for Jessica.
I am more than happy to discuss this further with you. I believe at a minimum a professional cleaning staff should be contracted to thoroughly clean Jessica’s bedroom and bathroom, including carpet cleaning and window cleaning. I also believe Jessica’s rooms should be painted, and then a plan put in place to ensure that an acceptable level of cleanliness is maintained.
Please feel free to contact me at the address/phone number listed below.
Jessica's Mom
My Address
xxx-xxx-xxx(home)
xxx-xxx-xxx(office)
cc: Department of Behavioral Health and Disability Services,
Office of Licensing
Attention: Person in Charge