Finally

I don't know if my school district is getting easier to deal with or if I am giving up the battles...or something in-between. But for today, I am going to go with the thought that the school district is improving.

The IEP meeting for my oldest daughter, Jessica, was held Thursday afternoon. Since Jessica will be 21 years old this year, we're in the home stretch of the educational process and moving into the transition process full throttle. I've had and actually still have issues with the agency that will support Jessica's employment efforts in the future, but I must say that the school district and the IEP team really stepped up to the plate today.

The IEP is good, really good and addresses all my concerns about transition. Though I didn't ask for an assistive technology eval, one was conducted, and the AT representative had a whole bunch of great ideas. And get this - Jessica is getting an IPad provided by the school district! She will use it to develop a calendar, practice some educational skills, and use it to record important information.

Everyone on the IEP team seemed to care about Jessica and what her future holds, and they really listened to my concerns and suggestions.

Why couldn't this have happened 12 years ago, and for all my other children with IEPs? I can't go back and change anything in the past, so I am going to just relish that things are going well now. If I dwell too much on how much further along my children could have been educationally, I will miss out on the enjoyment of the positive things that are happening now.

So thank you IEP team, thank you for proving that we can all care about our children's future.

Why?

The group home in which Jessica lives is dark. The draperies are usually closed – the furnishings are dark and heavy – even the air inside the home seems oppressive.

The day support program she attends is in a one-story cinderblock building. The walls are institutional green – the adornments on the walls are posters about CPR and behavior management – the furniture is old and mismatched and lost its original color years ago.

The school classroom to which Jessica is assigned is in the basement of the school building. It too is dark and joyless. Again, the walls are institutional colors, and many of the lights are burned out. There are no windows and whole feeling is one of gloominess.

The descriptions above are not the exception. Jessica used to attend a different day support program, and it was worse than her current program. And the other two group homes in which she has lived were also dark, gloomy, and drab.

Why?

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

I wish I had the time and money to paint, refurnish, and refurbish these places. I’m convinced that we would see improved moods and improved behaviors if environments were improved first.

Teaching Through The Years

As I was drifting off to sleep last night, I began to think of all the things I have tried to teach my children over the years. I also realized that I have taken several different approaches to that teaching.

When my children were very young, direct instruction worked best (“Here honey, this is how you tie your shoes.”, “Hold your fork this way and it will be easier to pick the food up.”).

When they got a little older, I believe I started teaching more by example. (“Mommy is going to volunteer at the Food Bank today.”, “Sit tight while I take this extra plate of food to our neighbor who is not feeling well.”).

Finally as teenagers, I am letting my children learn through failure, mistakes and consequences. (“You’ve chosen to not do your homework all semester, so you can’t go on the field trip.”, “Do you think you should have checked the pockets of your jeans before washing them because I don’t think you can get the pink out of your underwear now?”).

I am very proud of the many things my children have learned, and last night I started listing some of those things.

My oldest son, Chip, is an extremely compassionate, humble person. And, he knows how to plant and tend a garden. I’ve always believed that a person who can grow their own food will never go hungry.

Jessica has learned to control the angry feelings that overtake her sometimes. She understands that if she does lose control, she will not like the consequences, and that other people will not want to be around her. Also, despite all the doctors telling her she would never be toilet trained, at age 11 she did master that skill. So there, doctors!

Corey still has a lot to learn, but I think it is finally starting to click with him that if he chooses to not do his homework and study, he may fail in school. And when you fail in school, your plans for after graduation will be put on hold. One thing he has learned is to appreciate many different kinds of food. When he first joined my family almost 6 years ago, he didn’t want to eat much of anything other than junk food. Now, he will eat anything and everything that is put in front of him. Leftovers are a distant memory in my house.

Ashley has learned to stand up for herself, an extremely important quality for a person with a disability. She has also learned the value of charm and that a smile can bring many more rewards than a frown. She has exceeded and continues to exceed all the limits doctors placed on her as an infant. They were oh so wrong, and she works to prove that every single day.

Ronnie is still adjusting and learning how things work in our family. He is currently working on requesting and not demanding, thanking and not expecting. He has one of the sweetest hearts of any child I ever known, and now with the excellent role model he has in Chip, I predict great things for him. He needs to work a little more on self-sufficiency, but he seems very open to that, especially if he thinks it will get him the attention of a certain young lady in his class!!

So what skills make you and your children the proudest?

Season Over

Four children with IEPs. Six meetings in the last six weeks. But I am done for this school year!!!

It’s so interesting to me how different IEP teams conduct meetings differently. Now all these are in the same school district, a school district that is OCD about following the rules (except when they don’t).

For Jessica’s IEP, the team just passed the document around via email. We had our discussions via email, and appropriate changes were made. Then I signed the document electronically and sent it to school electronically.

Ronnie’s IEP meeting, the first held for him in this school district, involved 16 people and two attorneys. The attorneys were not for the reason you probably suspect, but for now, I can’t share anymore. The final result however was that 2 weeks later, a great IEP had been developed for Ronnie’s transition to his new school.

Ashley’s IEP meeting was pretty run of the mill. Of course, that has not always been the case, but I think we are finally re-establishing good working relationships. Until high school, her IEP meetings were always contentious, lasted hours, and often ended in mediation and once in due process. But this year was fine. She has a good IEP and next school year is looking to be a positive experience, much like this first year of high school.

Then, we had ESY IEP meetings for both Ashley and Ronnie. Again, no problems and good results.

Today I finished up with Corey’s IEP meeting. Corey’s meeting was only attended by me, the case manager, and a general education teacher. Of course, we were missing an administrator, but I was too tired of meetings to quibble about that. Corey’s meeting was interesting because of the contrast between Corey’s actual abilities and his motivation to do a good job, or even a passable job, at school. It’s tough to write goals and objectives when the primary reason Corey is failing 11th grade is lack of motivation.

Also, because Corey can’t plan and imagine a future any further than tomorrow, we did beef up the IEP with objectives requiring him to explore and consider life after high school. I am so worried that he will eventually squeak through high school, and then have absolutely no place to go. College isn’t looking likely. The military, his first choice, is even questionable. I proposed to the team that we hit hard on some vocational skills and they agreed. So, we ended up with another good IEP.

Other than all the time I had to take off from work, this year’s IEP season wasn’t too bad. But I am really, really glad it is over!

A Butterfly Emerges

Today was an important day for my daughter, Jessica. Today Jessica's team and I decided that she no longer needs the services of a behavioral therapist.

In 2007 I wrote about Jessica's Reactive Attachment Disorder diagnosis. And later that year, I wrote about Jessica's team adopting the Positive Behavioral Supports approach to helping her learn to manage her aggressive tendencies.

Today I am so very happy to report that Jessica is maturing into a fine young woman, and she, her team and I feel she will be just fine without the behavior specialist that has helped her for the last three years.

In June, Jessica will be moving to an adult group home. She will be starting volunteer work, and she will work with our state's Department of Rehabilitative Services to find a job that she likes.

The early years of Jessica's adoption were so very difficult for everyone - her school, her daycare, and most especially her family. Jessica broke two of my ribs during one of her rages. She hit a child in a wheelchair so hard one time that she knocked the child and the wheelchair over. She also threw a rock into the back of another child's head. And these are just a few examples of what could happen during her rages.

But today I hope that families who might be going through the same difficult times will look at Jessica and realize that there is hope. Learning to control anger has not been easy for Jessica. Learning to get along and build relationships with people has been a struggle. Having hope and a vision for the future has also been difficult. But she is doing it...

I have always been proud to call her my daughter, but never more than I am today.

I love you, Jessica.

Doing Your Job

Last December, Jessica and I met with our state’s Department of Rehabilitative Services. That agency, DRS, is responsible for helping people with disabilities find employment. Of course, the person has to be found eligible first before DRS will assist.

Our first meeting didn’t go so well. The ‘counselor’ who scheduled our meeting seemed annoyed from the beginning of the meeting. I’m not sure why. Although the meeting was about Jessica, the counselor would only talk to Jessica through me. At one point, he claimed to have a difficult time understanding what she said. I told him that if he would look at her when she was talking, more than likely he would be able to understand her.

The counselor also gave us the impression that he didn’t feel Jessica was capable of being employed. He talked down to her (again through me) with statements like, “you know, you will have to get up to an alarm clock to get to your job on time.” And, “Do you think you can handle using public transportation?" These rude (in my opinion) questions were all posed before the gentleman even got to know Jessica.

The meeting ended when the counselor said he would contact Jessica’s school and our county’s agency that provides case management for people with intellectual disabilities. He told me he would let me know if Jessica was eligible for DRS’s help.

Like I said, that was in December. By March, I still had heard nothing. My calls to DRS went unanswered, and Jessica, now 19 years old, still had no plans for preparing for future employment. So, I contacted our state’s protection and advocacy organization. They agreed to represent Jessica and immediately began requesting records from DRS.

DRS said, “of course we found her eligible”, but of course, they hadn’t notified anyone. They were unable to produce records that showed she was eligible, and in fact could produce no records at all. So the attorney from the protection and advocacy agency and I met with DRS today – the original counselor and his supervisor.

The DRS folks were nice as could be today. They apologized. They made plans to do an employment situational assessment. They agreed to contact the school and the county case manager. In short, they agreed to do everything they should have done last December. I’m convinced that things changed because the attorney accompanied me to the meeting.

Why does it have to be this way? There have been way too many times that the only way I could get the attention of someone or some organization was to contact an attorney. The sole function of DRS is to help people with disabilities get jobs. Why did it take threatened legal action to make them do what they are tasked with doing?

Things really do not need to be this difficult.

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.

Insensitive

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

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

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

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

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

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

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

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

Today I am thankful for Jessica's tenancity.