Affliction Day

This article below appeared in the Mansfield News Mirror, a Texas newspaper. Before reading it, consider the definition of 'affliction':

af·flic·tion   /əˈflɪkʃən/
–noun
1.a state of pain, distress, or grief; misery

I swear, if my school district ever wants to have an 'affliction' day, my child will not be the one that is afflicted. (Notice the non-blindfolded student laughing at the student pretending to be blind in the picture to the right.)

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Students Spend Challenging Day

The students at Mansfield High School have experienced learning on a whole new level. The past few days the students in Robyn Russell's Teen Leadership class have been preparing to have an affliction day. The students were blind, deaf or mute. They had to live one day the way a child or adult with disabilities would in an educational atmosphere.

The students were given tasks they had to complete with a partner who did not have a disability. One of the tasks was for each student to go down the hall and get a drink of water. Many of the blind students had their hands out to feel for walls and depended on their partner for guidance.

"I was very disoriented while walking through the halls," said senior Ryan Collins. "I have been walking these halls the last four years but as soon as the blindfold went on I had no idea where I was in the school."

Another activity was to color a picture of a tiger. First, the teacher asked the students to write their names on the paper. Most of them ended up being sideways or upside down. Next, they were given two markers and told to color a picture.

"I felt lost," said Shayla Blackwell, a sophomore. "I didn't even know what I was coloring let alone what color markers I had in my hands."

The students also had to complete a workout routine. The majority felt dizzy and embarrassed. All the students believed even in the short period of time they were disabled that one of their other senses became stronger.

Affliction day gave students a small insight into the life of a disabled individual. The tasks they completed were simple to those without disabilities, but they could tell that life would be much more difficult with a handicap. The students got to experience a few of the challenges having a disability creates, but there are many more such as discrimination in employment, higher insurance and for teenagers a social status that can be difficult to overcome.

Many of the students said walking in another person's shoes is the best way to experience their life.

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...)

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

Oh No, Say It Ain't So

I was so thrilled when Dancing With The Stars started this season because the hunky Maksim was coming back as one of the professional dancers. He was not on the show last season, and it was, in my humble opinion, a less than exciting show. But this year he came back. And now, it looks like he may leave...

Rumor has it that Maks's partner, Misty May-Treanor, has suffered an injury and will not be back. That means Maks will not be back.

I may just have to boycott the show for the rest of this season.

I'm Not Ready

I looked at the calendar today, really looked at it, and realized that the summer break from school is already half way over. How did we get here so quickly?

I’m not ready to start thinking of school supply lists, school fees, new clothes and shoes.

I’m not ready to fill out the pages and pages of forms on which no information has changed from last year. Why can’t the information be transferred year after year, letting parents verify instead of getting writer’s cramp?

I’m not ready to start training another teacher for Ashley – trying to make that person understand that deafblindness is a unique disability that is not the same as being only blind or only deaf.

I’m not ready to insist that Jessica’s teachers have high expectations for her and teach her math and reading rather than cooking and shopping.

I’m not ready to start the homework struggles with Corey, and holding my breath each time his report card is due to come home.

I’m not ready to deal with late buses, nurses who overreact and school administrators who have lost sight of why they chose the education field.

Five weeks left, and I refuse to think about these things for at least the next three weeks.

Say WHAT?????

Have you ever been sitting in an IEP meeting or some other school-related meeting when someone from the school staff says something so utterly ridiculous that you are left speechless?

I read an article in the Virginian Pilot newspaper yesterday on the subject of advocates assisting parents in the special education process. One of the advocates featured in the story, Cheryl Poe, began her journey to advocacy because of one of those ridiculous comments made to her about her son. The quote from the newspaper was "For Poe, her activism was spurred by her own experience. About six years ago, while trying to get diagnosis and treatment for her son’s learning disability, she said a school speech pathologist told her she was the problem, that she must have been speaking black English to him at home." Say WHAT????

Although I've heard many ridiculous comments at the IEP meetings for my children, the worst was when, following a triennial review, Ashley's teacher announced to the team that Ashley was a "visual and auditory learner." Say WHAT?? ASHLEY IS DEAFBLIND!!!

So, what inane comments have you heard?

Christmas List

• Christmas tree and decorations up - CHECK


• Christmas cookies made - CHECK


• Gifts bought and wrapped - CHECK


• Christmas menu planned - CHECK


• Take Ashley to see Santa BECAUSE SHE SAID SHE WANTED TO GO - CHECK


• Pay to repair Santa's bells which were hurled across the mall and the stitches for the child whose head 'found' the hurled bells - CHECK

Merry Christmas, everyone!
(click on the picture for a larger view of the Christmas spirit on Ashley's face)