I Want The Truth

I got the call from the school nurse at 2:15pm Friday. They told me Jessica was on her way to the hospital in an ambulance. And here's the reason they gave me:

Jessica was late getting to school on Friday. Once there she was very, very, very sleepy - so sleepy that she fell asleep in the restroom, and started choking at lunch because she fell asleep while eating. The teacher had a rough time rousing her. During one of her awake periods, Jessica said she had gone to the dentist that morning and the dentist gave her medicine.

Thing is - Jessica did not have a dentist appointment, and to top it off, Jessica doesn't make up stories. Never has. Never tells a lie. Her brain is just not wired that way. Her teachers in elementary and middle school found it impossible for her to concoct a story for reading class even when she was given the start of the story. She has never engaged in imaginative play. She does, however, repeat verbatim things that people tell her.

I was told that Jessica's group home manager was following the ambulance to the hospital, and I told the school I was headed there also. Since I was at work downtown, it would take me about 20 minutes to get to the hospital. When I arrived, there was no group home staff anywhere to be found, and no one had been there.

Jessica was indeed sleepy. She barely opened her eyes to tell me hi and then she nodded off again. Usually a person that requires four strong men to hold her down for a blood draw, she didn't even whimper when the nurse stuck her. This definitely was not Jessica....

I continued to try tracking down the group home manager. We needed answers to questions about how Jessica's previous night had gone, what had happened before school, and if anyone else at the group home was sick. But I couldn't get her. Finally a strange man popped into the room and said he was a group home staff member. But, he had no answers to our questions.

The ER doc had a cat scan done. I was worried that Jessica's shunt may be failing, although her symptoms really didn't support that. The cat scan agreed - it was not a shunt issue. Fortunately, the ER doc astutely ordered a tox screen - a test to check just what Jessica may have been given or ingested.

Apparently, she was either given too much of her meds, or she was given meds that belonged to another group home resident. But the group home staff refused to accept that. They said she was fine and they had no idea what the doctor was talking about.

Jessica was finally discharged, and I have left a message for the director of the company to contact me. Although I am sure there is no written record of the extra meds, just the fact that someone told Jessica to say she went to the dentist convinces me that the person knew something wrong had occurred.

I'm not sure where all this is going to go, but I will keep you posted...

Defining Moments

Are there things in your children's life that you feel have dramatically changed things for the better? Sort of a shot-it-from-the-rooftops better?

Since my 19 year old son left today for the Army, I was reflecting on both his past and my other children's past. I realized that there have been momentous days in each of their lives - moments that I believe really changed the course of their lives for the better.

For Corey, my 19 year old, making the decision to join JROTC in the 9th grade was his moment. Corey as you know if you are a long time reader of this blog, had an early childhood that was difficult to say the least. Raised for the first 10 years of his life on the streets of Baltimore by an alcoholic, drug addicted birth mother took its toll on him. But the love of family (he joined me at age 12) and the order and consistency of JROTC really prepared him for a future that will be bright.

For Ashley, I believe the moment that set her life on a better course was when she got her G-tube at age 2. Born at 26 weeks gestation to an alcoholic birth mother, and facing a ton of medical issues, she was headed down a very difficult health path. But the G-tube allowed everyone to relax and work on feeding issues as well as the rest of her medical issues. I truly believe that her good health today was defined at that moment of surgery.

For Jessica, her moment came in middle school. Prior to that time, Jessica had battled rages and the inability to attach to anyone, least of all me. But in middle school, her teacher and the rest of the school staff finally joined forces with me to prove to Jessica that she could trust and love and attach. Though she still has demons to battle, I believe that she will do so knowing that she is loved.

And finally for Ronnie, his life changed drastically when he got an IPhone. I know, I know - that doesn't sound like that big a deal. But what that phone did was to open his world to his peers. In a world where not a lot of teenagers know sign language, he is now able to communicate via text with all his peers. And for those peers that do sign, he is able to use the phone as a video phone and sign back and forth with a peer. His world opened up that day he got the phone, and it continues to get larger with each passing day. His communication abilities, his literacy, and his technical knowlege is growing by leaps and bounds.

What about your children? Have there been defining days in their lives? I would love to hear about them!

Room in the Nest

Being the parent of adult children is not always fun. I remember the disappointment in my mother's voice when I had to call her and say I wouldn't be coming for a visit because something else in my life took priority. It really shouldn't have but when you are a young adult and know everything, priorities are often skewed.

I experienced the same disappointment this past weekend.

My 19 year old son, Corey, is leaving for Army basic training very soon. He will be many states away and I don't know how long it will be until we see him again. He's been told that immediately after basic training, he will be going to an 18 week class in yet another far away state.

To both celebrate his future and to spend one last day together as a complete family, I planned a big meal and looked forward to having all my children home for the day. Unfortunately that didn't work out.

Jessica called me in the morning, and I reminded her that we would see her at 10am. She said OK. 10am came and went, as did 11, 12, 1 and 2. Our meal was planned for the late afternoon, and I kept hoping she would show up in time for that.

She didn't.

So my plans for one last family portrait with everyone in it fell apart. Corey asked several times if Jessica was going to show up, and I had to tell him I didn't know. I think he, like me, was disappointed.

I haven't heard from Jessica yet, and I guess I should try not to sound disappointed when we do talk, but it will be hard.

Sometimes the momma bird has to kick the little ones out of the nest, and sometimes the momma bird wishes they would stop back by once in a while.

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.

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?

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

Thankful Thursday

Today, I am dedicating my Thankful Thursday list to my children in honor of Mother's Day. Today I am thankful...

• for the way Ashley leans against me and falls asleep for 10 minutes each school morning while we wait for her bus


• for the pride Corey displays when he is wearing his JROTC uniform. He deserves to feel proud of himself.


• that Chip offered to buy a week's worth of groceries for me for Mother's day. I said no, of course, but it was very sweet that he was willing to do it.


• that Jessica still calls me every single night, even if it is just to yell at me.


• that Ashley is still very much a Momma's Girl. All my children are growing up so quickly and it is hard to let go of the closeness of their younger lives.


• that finally after 4 years, Corey does seem to be an integral part of our family.


• for the sweet way Chip touches Ashley on her cheek each morning, even if she is being Miss Grumpy Pants


• that Jessica still tells everyone that she thinks I am beautiful


• that all my children are growing into fine people, people who care, people who I am convinced will make a positive difference in this world


• and finally, for the child I have yet to find but hope to bring home one day in the near future

Happy Mother's Day!

Someone To Watch Over Me - Follow Up Part Two

Today I am continuing my followup to my post about guardianship issues for my 18 year old daughter, Jessica. My original post is here, and Part One of the follow up appears in yesterday's post.

Question 3 - What if I had concerns regarding Jessica's care in her group home? Would I be able to intervene with a guardianship? What if I knew her caregivers were trying to cover up something? Legally could I do anything to help Jessica?

Whether you are the guardian or not, anyone can file a report of suspected abuse or neglect. Your rights as a guardian are no different in that respect from anyone else. I don't see that guardianship helps in this situation at all. A person does not decide NOT to abuse someone because she has a guardian.

Question 4 - What are my other options? Would my child have to be legally competent to sign a medical directive? Could she also revoke it should the mood strike her?

For one thing, an advance directive is not an issue for a child because everyone under the age of 18 is considered to lack capacity. I think the competency level to agree to and sign one is fairly low. I have met with individuals who are basically non-verbal, but I had no doubt that they understood the concept and I had no problem drafting an advance directive for them.

As for revoking an advance directive, yes, the person can revoke it. That's one of the beauties of the concept because it is easy to write, easy to use and easy to change. You can do all those things without the involvement of attorney or courts.

This is an argument that is used quite often against advance directives, but I have rarely seen it play out in real life. The only time I've heard of it causing a problem is with a person with long term mental illness whose capacity yo-yos.

Question 5 - I've protected my child ever since I adopted her. Sometimes it seems like she needs the protection still, if not more.

I live in the real world and I want everyone to have the same opportunities and the same experiences as I do. I understand that some people need extra care and attention. I am not against guardianship in some cases, but if we can protect the person while still maintaining the civil rights, then why not?

The reality is that guardianship is always an option but maybe shouldn't be our first option. If you choose an alternative now, and decide later that your daughter needs guardianship, what have you lost? If you choose guardianship now, there is very little chance you can go back and change that decision because you would have to go back to court and prove that your daughter has regained capacity - very hard to prove when the individual has life-long cognitive disabilities.

I'm glad a lot of people have trouble with the idea of guardianship because it is a last resort and should be considered only in those situations where an alternative is not feasible, especially for a young person just starting their adult life. Even in a situation where it is needed, we should still pause because we are taking away that person's civil rights. When a guardian is appointed, the person loses the right to vote - to choose where they live and work - to get married or divorced - to have a driver's license - to make medical decisions including such personal decisions as sterilization, abortion, major surgery and do-not-resusitate orders - to enter contracts to rent, buy or lease property, and to write a will or advance directive.

Even if all those rights do not apply (even if none of these rights apply) to the individual, just the sheer loss of basic civil rights that these examples portray should give us pause when we consider petitioning for guardianship.

I hope you all have found this information as valuable as I have. And again, if you are considering any legal action involving your adult child with a disability, I urge you to contact an attorney or you state's protection and advocacy organization.

Someone To Watch Over Me

My daughter, Jessica, turned 18 years old this past December. Lots of people have been telling me that I need to go to court and have myself appointed her guardian. The school folks have told me that if Jessica decides she doesn't want to go to school anymore, she can make that decision for herself - unless of course I am appointed her guardian. The folks at our community service board tell me that Jessica would be able to make her own decisions regarding where she lives and what medical procedures she may want or not want - unless of course I am appointed her guardian. Friends and family tell me that I need to be appointed guardian for Jessica's sake. So, why do I feel so uncomfortable with the idea?

Jessica is significantly intellectually disabled. Her IQ is 52. She has aggressive outbursts and has injured both herself and others. She is living in a group home, and probably will be for the rest of her life. I'm hopeful she will be able to have a job, but our efforts to support that have so far not been successful.

So, it does seem like Jessica needs a guardian - someone to help her with decision making and to ensure she is not exploited or taken advantage of. Several weeks ago, I contacted the attorney that has helped me with both a due process case and a lawsuit againt Medicaid. I wasn't asking for his assistance with the guardianship because he works for our state's protection and advocacy organization and these kinds of cases are not ones they handle. Rather, I just wondered if he could recommend an attorney.

In his usual passionate,helpful manner however, he did ask one of the other attorneys in his office to contact me. I now have a meeting scheduled for the attorney, Jessica and me to discuss options. The most exciting thing about all this - the attorney told me that there are options other than guardianship. I have no idea what they are, but just the knowledge that there might be other options made me feel a little more comfortable.

Have any of you had to address issues like this? What did you ultimately do, and what were your feelings while going through the process? I'm having a tough time, and am not doing a good job explaining why. Maybe your comments will help me...

Looking For Love

I wrote last week about my concerns for my daughter, Jessica, finding a job. I am also concerned about Jess finding love.

Jessica is 18 years old, and quite interested in the opposite sex. She always has been, but as a young child we attributed her extreme interest to her diagnosis of Reactive Attachment Disorder. One of the symptoms of RAD is sexually provocative behavior at a young age. But now her interest is different.

The objects of Jess’s attention are boys her own age rather than men that are much older and in roles of authority. She seems genuinely interested in developing an age-appropriate relationship, dating and eventually falling in love. My concern arises because Jess’s cognitive age is more that of a 6-7 year old.

How do I ensure that she is not taken advantage of by a boy that is her age chronologically but much older cognitively? How do I help her understand what things are appropriate and what things aren’t? How do I explain a healthy sexual relationship to someone who is essentially 6-7 years old?

I want Jessica to fall in love, get married, and have children if that is her dream. But I don’t have a clue how to help her realize that dream. She doesn’t even seem to understand the biology of her body although I and her teachers have worked for years to help her understand. And as I mentioned in my earlier post, I don’t know how her aggressive outbursts will allow for a close relationship, when in fact, the outbursts get worse as she gets closer emotionally to people.

I know these issues must have been tackled by many others, and it is their advice I am seeking. Or, if anyone is aware of other resources that might help Jessica with these issues, please let me know.

Going Postal

My daughter, Jessica, is 18 years old, and should be starting to find a job. Jessica is significantly cognitively impaired, but I strongly believe that there is a job that she can do and can do well. She has always said she wanted to be a nurse's aide, and I want to support her in reaching those dreams. And even if she doesn't realize that exact dream, she needs to find her place in the adult world. It's going to be really tough though given her outbursts of rage and aggression.

For years, 11 to be exact, Jessica has struggled with Reactive Attachment Disorder, a condition common in adopted children and which manifests with outbursts of aggression. Because of her significant cognitive challenges, traditional talk therapy has not been an option. All her doctors and I have been able to do in an attempt to control the aggression is to medicate her. I hate it, but she cannot be allowed to hurt herself or other people.

I had hoped that once the surge of puberty hormones subsided, her aggressive behavior would also. But the opposite has happened - she has gotten increasingly more aggressive, and as she has grown, that aggression has the potential to be very dangerous.

When Jessica is not being aggressive, she is the sweetest, kindest person you might ever meet. But when the moments of rage strike, and those moments are not predictable, everyone around her is in danger. So I wonder, how will Jessica be able to maintain a job when she can't maintain control of her anger?

Her school system, her case manager, other support staff and I have been working very hard to make sure she has the skills to do a job she would enjoy doing. But we are all at a loss as to how to help Jessica overcome her rage and aggression to the point that an employer would be comfortable hiring her.

Have any of you faced a similar situation, and if so, do you have any advice to share? I sure could use some...

Another Crash Test Dummy Family

When I read Melody's post at 5 Minutes For Special Needs yesterday morning, I felt as if she had been reading my mind. In her post, The Crash Test Dummy Family, Melody shared her pain at being verbally and physically attacked by her 13 year old son who is diagnosed with FAS (fetal alcohol syndrome). Although my 17 year old daughter, Jessica, is not diagnosed with FAS but rather RAD (reactive attachment disorder), the scene Melody described is all too familiar to me. And I had spent my night and morning worrying about Jessica.

Jessica still has frequent outbursts of rage and aggression. She still hurts people. Even after 8 years of a stable home, a loving family, and many many hours of therapy, Jessica still is scarred by her early life in foster care. While school systems and after school care facilities must learn to help her and find ways to help others in Jessica's world of aggression, I worry what will happen when Jessica enters the job market.

Employers will have no obligation to help Jessica control her aggressive tendencies. They will not have to offer therapy or train other co-workers on how to get out of her way should she begin to rage. They will simply refuse to let her work. So in my worries, I was seeing Jessica move from job to job, always being asked to leave when the aggression surfaced, and her depression growing deeper with each rejection.

Melody's words which really hit home for me were "You spend the life of your child trying to encourage his brain to re-wire itself to function with a smidgen of impulse control. Nothing changes. It only escalates. You keep praying. You keep loving him."

I felt Melody's despair yesterday because it is my despair. And like Melody, I will love and support Jessica no matter what. But the thought of what most likely will come in her future, does indeed deepen my despair.

Help Yourself

My daughter, Jessica, will be 18 years old this year. This fact snuck up on me and kicked me squarely in the gut. She will no longer be a child, but rather a young adult. Where I once worried exclusively about her health, her education, and her ability to interact with other children, I now must add finding a job, deciding where to live, and most importantly, how to advocate for herself to my list of worries. As I lay awake last night listening to Ashley struggling to feel better and sleep herself, I began to wonder how I can make the transition from being Jessica’s primary advocate to helping her become her own advocate.

In the not too distant future, I want Jessica to be able to make some decisions for herself – decisions I have traditionally made for her. For example, Jessica should be able to make some decisions about her medical care. She should know that she is able to change doctors if she is uncomfortable around one, or find a doctor that is more convenient for her schedule. She should be able to tell another person to back off, leave her alone, or mind their own business. She should be able to speak up for what she likes, what she doesn’t like, what she wants, and what she doesn’t want. She should be able to make choices about her clothes, her hair, and the type of music she enjoys. She should be able to decide how she wants to spend her leisure time or what she wants to eat for dinner. I would really like for her to be able to speak to lawmakers or other agents of change, letting them clearly know how she feels on issues that affect her. I want her to be happy and comfortable in her own skin, and confident to express her opinions. But, I just don’t know how to help her reach that place of advocacy.

I have found a program that is sponsored by the Virginia Board for People with Disabilities. It is called the Youth Leadership Forum, and the following information is from their website:

The YLF-VA program seeks to empower young people with disabilities to further develop their leadership skills. Students, serving as Delegates from communities throughout Virginia, participate in a wide range of activities and learning experiences during the four day Youth Leadership Forum set on a university campus.

The YLF curriculum includes training and development of individual career and life-goals, leadership skills, social skills, and self-esteem. Delegates benefit from sharing the experience of an energetic and socially enriched environment with other delegates, distinguished guests, mentors, and highly motivated volunteer staff.

Program Components:

• Small Working Groups to explore and develop self-awareness profiles, personal leadership goals, career and academic plans.
• Diverse Activities including educational, social, artistic, athletic and recreational events that demonstrate to young people the joy of leading a well-rounded life.
• Guest Speakers and Faculty that address issues such as disability rights laws, innovations in technology, use of assistive technology, employment opportunities, community volunteerism, advocacy and legislative opportunities in the Commonwealth.
• Interaction with Guest speakers and staff-people with disabilities from the private and public sector who have successful careers and/or businesses and who have maximized their talents and serve as role models.
• Field trip to the State Capitol that provides an opportunity to interact with high-level elected officials in Virginia's state government.

Eligible candidates include rising high school juniors and seniors from Virginia who have a disability, are highly motivated, and have demonstrated leadership potential.

Student Delegates are recruited statewide through a competitive application and interview process. Application requirements include written references and in-person interviews. Recruitment strategies incorporate criteria into the student selection process that, while being competitive, enable students to attend the Forum who might otherwise not have the opportunity for leadership development and who demonstrate potential and desire to become future leaders. Recruitment and selection strategies include procedures and outreach that demonstrate full commitment to including students with developmental disabilities as well as other disabilities.

This sounds like something that might help Jessica achieve some self-advocacy skills, and I plan to contact the other members of Jessica’s support team to see what they think. For my readers who have followed my posts about Jessica for some time, what do you think? Have you ever known a young person who has attended this forum or something similar? Do you have other ideas on how to foster self-advocacy?