Final Post

    Michelle stays in her community of intellectually disabled adults.  She is assigned a caseworker that is able to find her a new job folding laundry in a local retirement community right down the road.  The caseworker has also provided a community-based program for Michelle to become part of since she is now in her mid fifties.

    Michelle decides to go to the outings provided by the local university through a club known as best buddies.  To her luck, she is paired with a sweet girl who makes sure to treat Michelle like a little sister and best friend.  They go on monthly outings with a big group who are involved with the best buddies club, and Michelle’s buddy contacts her once every week (via email, letter, phone, and/or visit).  

    Michelle never truly had a best friend, and they both have similar interests and taste in music.  Michelle gets along very well with her best buddy since Michelle is sort of stuck with a child's mindset.  

    Sadly, after Michelle’s 57th birthday, her father passed away from a severe stroke.  Michelle refused to leave her room for days.  Pam was able to coerce Michelle into attending the family night and the funeral.  This was really hard for Michelle and the staff at her community noted the changes in her mood and overall happiness for nearly the next year following her father, Brian’s, tragic death.

    Time passed and Michelle learned that she LOVED puzzles and ice cream.  These were her two favorite things, and were her favorite thing to do with her buddy.  She and her buddy had been paired for all four years of her buddies’ college career, and it was time for her buddy to pass her on to a new person.  Michelle did not understand at first and figured she would still be able to come see her.  Unfortunately, Michelle would only receive the occasional call, email, and letter now.  

    Michelle began to steal from her housemates and hide their stuff throughout the house.  Michelle had never had a history of this, so none of the staff understood where all these missing things were going until they noted that Michelle was the only resident that was not missing anything!  

    Pam was now in her eighties and Michelle in her sixties.  Michelle was still a clepto and she was caught wandering out in the back yard in confused states more often.  The house nurse decided it was time to get a doctor’s diagnosis.  Come to find out Michelle was developing Alzheimer’s and was experiencing the early stages of dementia.  

    Eventually, Michelle ended up defecating herself and needing diapers and constant changes.  Her hygiene was becoming an issue and the staff at her community was becoming less equipped and sought out taking her to the elderly home for the intellectually disabled in that community.  She ended up in another house that was in that community, but she was with the other confused, physically inept aging individuals of the community that she had spent most of her life living in.  Michelle no longer remembers her mother since she is now old and wrinkly.  When her mother shows her a picture of them when she was younger Michelle recognizes her mommy.  This breaks Pam’s heart to see Michelle like this.  Pam ended up passing away before Michelle, with no one left in the world to call her own.

    Michelle lived until 64.  The Alzheimer’s progressed rapidly and harshly on Michelle.  Michelle passed away while dependent upon a ventilator and without speech or movement anymore.  The nursing staff at Michelle’s home was heartbroken and became her family and mourned their loss.  They lost a sweet girl who had had a quality life even though she was born in such turmoil.

July 15 Post Nine

Pam and Brian spend some more time with Michelle after her surgery to make sure she is well enough to live on her own. Because of her regressing skills, they have to work with her to make sure she can still complete basic tasks at home and perform her own personal hygiene. It takes a year before they are comfortable letting her go to live on her own.

Michelle begins living in an open community for adults with Down Syndrome. The community is monitored by several nurses and doctors, and volunteers that come once or twice a week but mainly the residents run the day to day jobs such as food operations, working the stores and libraries, and cleaning common areas such as the park. The community is a full square mile with apartment residences separate from the community buildings for working and social life. The community lets residents settle in for 3 months before they begin working. Michelle gets a job at the grocery store next to her apartment as a shelf stocker. Her job is to stock the shelves with food products and help customers find what they are looking for. She works 4 hours a day and receives a set pay every week for affording her own groceries and needs. The grocer job is similar to work in the soup kitchen for her so feels fairly familiar and helps monitor her deficiencies when she begins to forget.

Michelle makes  a few close friends that she enjoys spending time with in common areas like the park and game center. They love to get together and play board games together or dance around to music. It has become best for her to write down all of her daily activities in a calendar including time reserved for seeing her friends each day so that she has a regular schedule every day.  She is prompted by the nurses and aides who work there and that really helps her keep a schedule.

Pam and Brian come to visit her once a week to begin with on the weekends. Over time, their visits become less frequent and they visit once every two weeks, and then only once a month. When they visit, they bring her home with them for the weekend and spend time together. Pam and Brian have moved back in together but have decided not to get married again. They live together in their own small home with two dogs that they rescued. They sometimes discuss having another child together but Pam refuses to have any more children. Brian feels he was partially cheated out of raising a child so he wants a new chance.

After five years, Michelle decides to get a kitten. She sometimes gets lonely at night when all of her friends are home and she has not fallen asleep yet and it has started to make her feel depressed. She names him Tibby and puts his daily care into her schedule as well for feeding, watering, and changing the litter. Tibby brings Michelle’s mood back up and she does much better now hardly feels depressed at all.  

Michelle uses the exercise bikes and walks around the yard daily.  During the winter months the lack of exercise seems to affect her mood.  Occasionally Michelle will throw a tantrum, but that is usually due to issues with housemates.  One of the housemates recently got her favorite aide worker fired because of something she had whispered about other employees to the others she works with in that home.  This caused Michelle to become isolated and angry for weeks and no one knew what to do or whether they should just begin ignoring her.

Questions:

1. What are the benefits or consequences for adults with Down Syndrome when they adopt a pet?

2. What are the risks for middle aged women who decide to become pregnant? What are the chances of Pam having a second child with Down Syndrome?

3.  Do Down syndrome individuals get attached to those who care for them?  Would an environment where there are constantly new workers benefit or ultimately hurt those residents? If so, why is that?

4. Instead of ignoring Michelle, what should the staff start doing to make her not focus on the friend/worker she lost?

5. What are some programs for adults who are intellectually disabled?

Decision Point:

Do Pam and Brian keep Michelle in this community or do they look for a “community” that is more integrated into the community with a better more personal staff to resident ratio?



http://www.ndss.org/Resources/Transition-and-Beyond/Employment-Volunteer-Work/

July 11 Post Eight

Pam decided that she would send Michelle to High School, and Michelle was put in a resource room at the local high school in their area. Pam met with the special needs coordinator, so that they could discuss a transition plan, that would look towards the future and envision skills and preparations that would be needed for Michelle, to lead the most fulfilling life as possible. Formal transition planning, involves a document called a transition plan, which is required by law to form a part of Michelle's IEP.

               In her resource room at the high school, Michelle flourished learning basic math skills, and was even brought into a general education math class to learn simple algebra. Her fellow classmates were very kind to Michelle, when she would sit in the back of the room, and even offered to help her with her homework. A young girl in her class, named Liza, even offered to hang out with Michelle after school. Liza was going to be a senior, and was looking to do volunteer work. Liza talked with Pam, about being a mentor to Michelle after school, and Pam thought it would be a great idea. Two days a week after school, Liza and Michelle would do such activities as go out to dinner, go to the movies, go to sporting events, go mini golfing, etc. Having a mentor like Liza in her life, Pam was glad to see that even though Michelle had down syndrome, getting a mentor and spending time with Liza, was helping Michelle not feel isolated or different from her other classmates. Liza as a mentor helped Michelle gain true friendship and guidance. Michelle would comment that Liza, "always makes her feel special."

               While in her class at school, Michelle steadily improved her self-help skills. It was important for Michelle, for her teachers to let her do as much as she could by herself. Practice, was needed to perfect Michelle's skills, and Pam always caught Michelle doing basic things as home, as practice. Michelle was taking responsibility for herself and to Pam, it seemed as though Michelle had a sense of control of her life and self-esteem. In her program at the high school, Michelle became even more independent and could wash, dress, use the restroom, brush her teeth, and even do laundry by herself. Even though Michelle can do these tasks, Pam notices that she can do them quicker, neater, and smarter, but let's Michelle do them anyway, because it improves Michelle's confidence.

               Pam was promoted at work, and due to this, she was working more hours. Brian would stay over with Michelle, when she was not home to look after her. Even though Brian was her father and he was spending more time with her, it took Michelle a long time to fully be comfortable and accept Brian in the family. She liked that her parents were getting along and Brian was providing more financial support for his daughter. As Michelle got older, Pam decided it would be beneficial for Michelle to volunteer or get a job. She was learning life skills in her class, and pursuing them at home, so Pam thought it would be beneficial for her to help others outside of the home and school setting. Michelle was also not having any behavioral issues. She was able to understand contingencies, changes in plans, and issues facing others. She had a high auditory sequential processing level and she was able to understand and appreciate the need to take other's issues into account and wait for things that she wanted. Pam also made Michelle in charge of loading and unloading the dishwasher each night and setting the table for dinner, because Pam wanted her to understand and accept basic responsibilities. Increasing her chores at home and independent tasks leads to increased self-worth, but also improved functional processing and more productivity lifestyle.

               Michelle chose to volunteer at a food pantry, and Pam would go with her after work. On most days, Michelle was happy and bubbly and could stock the shelves, but recently Pam noticed that she was looking extra tired and was her sleeping patterns may be affecting her. Pam was worried that she may have sleep apnea. Pam also noticed that Michelle could not recognize simple fruits and vegetables and that when she was told to sort the fruit cans, every fruit was an apple. When she was told to sort the vegetables in the cans, every can was a carrot. This behavior was unusual for Michelle, and Pam noticed that her basic skills were regressing. At the dinner table, every eating utensil, she called a fork and Pam was getting worried.

               One day while Pam was at work, Brian was over taking care of Michelle, when she burst into tears and started having a tantrum, because her favorite TV show was not on at the time. She also started complaining that her chest was hurting and she was crying uncontrollably. Over the past couple weeks, Pam and Brian noticed that she had difficulty eating and that she had gained weight, but they did not think there was anything wrong. Brian noticed that her breathing was fast and irregular and he rushed Michelle to the hospital. The ER doctors noticed that she had a degree of cyanosis around her mouth, toes, and fingers. Pam rushed to the hospital from work, and through clinical examination, it showed that Michelle had an enlarged heart and liver and her diagnosis had an atrioventricular Septal Defect. Michelle, may have been born for this, but was never found, because symptoms cannot show up for years. Michelle had a hole in the wall between top chambers and bottom chambers of her heart. Due to this problem, it would require Michelle to get surgery. After Michelle's surgery, Pam went into a downward spiral. She blamed herself as a mother for not catching and seeing the signs that Michelle was having trouble, that she dove herself into a depression. Pam quit her job, so that she could focus more on Michelle, so that she could be there for her daughter. Brian contributed to the medical bills financially, and moved into the house with Michelle and Pam.

Questions:

1.      After a medical Crisis, do teenagers/young adults with Down syndrome regress in their skills?

2.      What steps can Pam take to help her cope with what happened with her daughter? What treatment should she seek? What options are there?

3.      How common are heart troubles for teens/young adults with Down syndrome? Are there any other medical conditions/issues that could also occur?

4.      What is the average lifespan for a person with Down syndrome?

5.      What help groups and mentor programs are available for anyone with Down syndrome and their families?

Decision Point: When Michelle is able to get out of the hospital, does Pam put her in a group home, with special caretakers, or does she continue to live at home with Pam and Brian?

Citations:

FAQ and Facts about Down syndrome - Global Down Syndrome Foundation. (n.d.). Global Down Syndrome Foundation. Retrieved July 10, 2014, fromhttp://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/

Facts about Atrioventricular Septal Defect (AVSD). (2014, July 9). Centers for Disease Control and Prevention. Retrieved July 10, 2014, from http://www.cdc.gov/ncbddd/heartdefects/avsd.html

July 8 Post Seven

Due to Michelle's regression both cognitively and emotionally, she lost many gains and declined in progress. Because she was no longer in her 7-9 year old class, but the 9-11 year old program, she was not meeting the academic requirements to stay in the program. During the new IEP meeting, the school addressed with Pam, the idea of getting counseling for Michelle. Pam was very open about Michelle's behavior and thought it would be very beneficial for Michelle, and even decided that counseling would be very beneficial for herself as well. Pam contacted Brian, to see if he would continue his financial support, and to also see if he would like to come to the therapy sessions with her and Michelle, but he declined. He wanted to keep his contact with Michelle on a limited basis, but one day when Brian and Michelle were playing at the park, Michelle started to uncontrollably cry and would not listen to Brian when he was trying to calm her down. At the time, Brian realized that he needed to take on a more primitive role in Michelle's life. While they were at the park, Brian noticed his daughter was acting with impulsivity and noticed that she was stressed. Pam had never told Brian the extent of Michelle's separation anxiety and misbehavior, and noted that she could have a form of ADHD or an anxiety disorder and would join them in their therapy sessions.

               Even with the therapy with both of her parents, Michelle was not improving emotionally, and in fact getting worse. At least half of children with down syndrome face mental health issues and Michelle's opposition, impulsiveness, and inattentive behaviors were uncontrollable for Pam to handle, while working, because she could not give Michelle the necessary attention she needed at all times. In her class at school, Michelle was disruptive and inattentive. Pam noticed that Michelle was not sleeping at night, and that she was suffering from chronic-sleep difficulties, Michelle was falling asleep at odd hours of the day, and she always complained that she was tired and fatigued. Pam decided that even though she was against medication, that it was time to try something different for Michelle. They decided to try a serotonin reuptake inhibitor, which is commonly the drug of choice for the treatment of childhood and adult anxiety disorders. They also combined this medication, with cognitive-behavioral therapy, which is a type of talk therapy and has been scientifically shown to be effective in treating anxiety disorders. It taught Michelle skills and techniques to reduce her anxiety and combined with the medication, turned out to be a blessing, because after a few months, Michelle learned to identify and replace negative thinking patterns and behaviors with positive ones. The sessions only lasted 12 weeks, and Michelle was back to be her normal self, and excelling in school.

               As Michelle progressed in school and got older, she reached the middle school, and Pam had to make a decision of whether to keep her daughter in the same school, or pull her out and put her in a private setting. Knowing that this change might cause regression in both settings, she decided to put Michelle into the middle school program. As a parent, Pam wanted Michelle to have goals. In her middle school program, Pam wanted to see Michelle becoming more independent and learning personal care skills. During her time in the program, Michelle developed her own personal identity. She was fascinated with horses, and Pam took her to the stables after school. Pam noted that Michelle was learning self-confidence and had self-esteem, which Pam could clearly see at home. Michelle could read books to Pam, her favorite book was "The Cat in the Hat," and Pam often found Michelle reading on her own in her room. Michelle's teacher, thought Michelle would benefit from a tablet, that had games on it, because Michelle's eyesight was becoming weak, looking at pages and paper, so being able to play games and read on a tablet, would benefit her greatly due to the screen and bright images.

               Due to Michelle succeeding, Pam even enrolled Michelle at a program at the local rec center, which brought together children with disabilities and they played games together. Michelle developed her own network of friends. Pam was very happy with the progress Michelle was making. Physically though, Pam noted that Michelle was becoming very skinny. She had not grown in height in a couple years, and was worried she was not getting the proper nutrition, even though she was eating, since she could not gain weight. Even though some children with Down syndrome are overweight because they cannot control their caloric intake and eat more than they should, Michelle did not have this problem, and Pam made an appointment at a local physician's office, but was put on the waiting list.

               Pam and Brian were also getting along better, and were doing things together as a family. Pam could see that Michelle could sense that they were getting along as if they were a family unit, and Michelle flourished having both her parents as prominent figures in her life.  As Michelle increased her independence at home, Pam was now leaving her stay at home for a couple hours a day unsupervised. Michelle, Pam, and Brian were all very happy with what their lives had come to.

1)      What impact of a family system, have on a child with Down syndrome? Can children with Down syndrome, sense when their parents are happy, sad, and angry? Even though they may not "know per se" what is going on, do they still know?

2)      What other services can a Middle School inclusive program offer a child with Down syndrome, besides life skills?

3)      Do children with Down syndrome decline in Health when they get older? What illnesses are children with Down syndrome more susceptible to as they get older?

4)      Do children with Down syndrome regress in their emotional instability as they get older?

Decision Point: Does Pam let Michelle continue her education into a high school setting, or does she hire a tutor for her to continue her education? Pam is worried that if she is put in a high school setting special needs class, the other children of the school will see her and make fun of her, causing Michelle to act out and lose all the progress she has gained.

Citations:

An overview of the development of teenagers with Down syndrome (11-16 years). (n.d.). An overview of the development of teenagers with Down syndrome (11-16 years). Retrieved July 7, 2014, from http://www.down-syndrome.org/information/development/adolescent/

Mental Health Issues & Down Syndrome. (n.d.). - National Down Syndrome Society. Retrieved July 7, 2014, from http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Mental-Health-Issues--Down-Syndrome/

Treatment | Anxiety and Depression Association of America, ADAA. (n.d.). Treatment | Anxiety and Depression Association of America, ADAA. Retrieved July 7, 2014, from http://www.adaa.org/living-with-anxiety/children/treatment

An overview of the development of teenagers with Down syndrome (11-16 years). (n.d.).An overview of the development of teenagers with Down syndrome (11-16 years). Retrieved July 7, 2014, from http://www.down-syndrome.org/information/development/adolescent/?page=2​

July 4 Post Six

Michelle completed her second year in her special education program with one hour of inclusion for reading in a second grade general education classroom. Michelle enjoyed her time participating in reading with second graders. The students were receptive, and the teacher helped to make it a positive experience. The experience sparked Michelle’s interest in books and reading. Unfortunately, Pam had begun a new job as a nursing assistant and her hours left little time to reinforce Michelle’s desire to read at home. Studies show that parent involvement is extremely important for a child’s success at school. Exposure to books and reading at home helps a child learn to read as well as instilling an interest and desire to read. This is especially important in children with intellectual disabilities who require a great deal of repetition and reinforcement of learned skills, in order to maintain growth and avoid regression. The average child regresses over summer vacation, but will catch up quickly with a short review. A child with intellectual disabilities often requires longer periods of review and may even need to relearn skills. Parent involvement helps reinforce and maintain educational growth.

Even with some noted regression, Michelle made progress in academic and social areas. She no longer displayed the negative behaviors that she had demonstrated the first year. Her number recognition became more consistent and progressed through twenty. She learned to tell time by the hour and half hour and had learned to identify coins, as well as know the value of the penny, nickel and dime. In reading, she learned many new sight words and was able to read simple picture books with limited words on a page.

Michelle entered the last year of the 7-9 yr. old program. After the completion of this year, she would be eligible for the 9-11 yr. old program which would be the last elementary school setting. She continued to progress in her 7-9 yr. old program. Michelle continued with her reading inclusion program and was fortunate to get the same teacher since that teacher moved up to the third grade. Her sight vocabulary continued to increase along with her ability to read simple picture books. In math, Michelle had developed number concepts and one to one correspondence to 10 as well as rote counting skills to 50. Overall, Michelle was progressing nicely and Pam was pleased.

Given Pam’s new job as an assistant nurse and Michelle’s continued progress, Pam decided not to make any changes at this time. She kept Michelle at her school and continued living in their apartment. Brian continued his financial support and continued his involvement with Michelle on a limited basis. Pam was even able to give Michelle more time at home, now that her work shift had changed and there was more stability at home. This further contributed to Michelle’s progress. Unfortunately, when Michelle was due to enter the 9-11 yr. old setting; she contracted an upper respiratory infection which turned into pneumonia. This is not uncommon in children with Down syndrome. Common health issues such as ear infections, heart defects, immune deficiencies, and upper respiratory infections pose problems for children with Down syndrome. Her pneumonia required hospitalization and her recovery took longer than an average child her age. This was a setback for Michelle, since it resulted in a regression of skills she had learned. Michelle returned to school and had difficulty adjusting to her new setting with many new students and a different teacher. Routines had already been established and Michelle had reverted to some of her immature behaviors since her hospitalization. These behaviors included whining, clinginess, and an increase in dependency for activities she would normally do herself such as dressing or opening a container. In addition, Michelle withdrew and was reluctant to participate. She was not as cooperative during her inclusion setting. She became stubborn and refused to do her work. She would complain about physical ailments and want to go home. Michelle became angry and stubborn whenever demands were placed on her or she would just sit and cry.

At home, Pam would experience problems getting her ready for school for Michelle would cry and want to stay home. This was not like Michelle, for she used to love going to school prior to her illness and hospitalization. This posed a great deal of stress for Pam, given her new job, and affected her ability to treat Michelle with calmness and understanding. Consequently, it only served to exacerbate Michelle’s behaviors. Children who have been hospitalized become stressed and develop fears and separation anxiety. Pam’s reaction was a source for increased stress and anxiety for Michelle. In addition, a new class with new students and teachers was also a factor for increased stress. Michelle’s negative behaviors are a manifestation of this stress and anxiety.

Michelle’s behavior was not the only form of regression. Academically, she appeared to have lost many of the gains seen during her last year in the 7-9 year old program. Regression is a factor for all children after a break, but Michelle isn’t the average child and simple review is not enough. This was only compounded by Michelle’s hospitalization which has contributed to both behavioral and academic regression. As a result, the school has contacted Pam to address the need for the addition of counseling to Michelle’s IEP. Pam was very open to this given her problems with Michelle at home. Pam also consulted the behavioral psychologist for additional help and support.

Questions:

1.     How effective would individual or family therapy be for Pam?

2.     What role does regression play in the education of children with special needs?

3.     What classroom management techniques can be used to address Michelle’s behavioral issues?

Decision point: Does Pam seek medication for Michelle’s stress and anxiety?

http://www.sharecare.com/health/kids-teens-health/how-childs-behavior-change-hospital-stay

http://learningdisabilities.about.com/od/publicschoolprograms/g/rgrssndefnition.htm

http://eclkc.ohs.acf.hhs.gov/hslc/tta-system/teaching/Disabilities/Services%20to%20Children%20with%20Disabilities/Disabilities/disabl_fts_00014_061105.html

http://www.webmd.com/children/health-problems-related-to-down-syndrome

http://www.weac.org/Issues_Advocacy/Resource_Pages_On_Issues_one/Special_Education/special_education_inclusion.aspx

http://www.nea.org/

 http://www.ericdigests.org/pre-9221/rural.htm

 http://specialed.about.com/od/disabilities/a/downs.htm