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.
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/
1. After a medical Crisis, do teenagers/young adults with Down syndrome regress in their skills?
ReplyDeleteYoung adults with DS do regress in their skills after a medical crisis. According to the National Down Syndrome Society, the common difficulties are present in a young adult with DS facing medical problems: “Depression, social withdrawal, diminished interests and coping skills, generalized anxiety, obsessive compulsive behaviors, regression with decline in loss of cognitive and social skills, chronic sleep difficulties, daytime sleepiness, fatigue, and mood related problems (raising concerns of co-existing sleep disorders and sleep apnea)” (Pulsifier, 2012).
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?
Pam could learn all that she could about the atrioventricular Septal Defect that her daughter has. She could learn about all the signs of reoccurrence or another heart disorder that could occur after this surgery. She could do this by talking with her daughter’s doctor and also by seeking other medical advice about the medical issue her daughter faces. Pam should talk to her regular doctor about how upset she and how she blames herself for her daughter’s illness. The doctor can recommend talk therapy, counseling, or medication. However, the best thing to do for Pam would be to seek professional help to realize why she was unaware for so long and went so long without seeking medical help for her doctor. I think that it would be more beneficial if she could get to the root of that to better her and be well equipped with being able to put her daughter’s health first from now on.
3. How common are heart troubles for teens/young adults with Down syndrome? Are there any other medical conditions/issues that could also occur?
According to the National Institute of Child Health and Development nearly half of children born with Down syndrome are born with a heart defect as well. Other medical conditions that could also occur are as follows: vision and hearing problems, infections, hypothyroidism, blood disorders, hypotonia, upper spine issues, disrupted sleep patterns or sleep disorders, gum disease and dental problems, epilepsy, digestive problems, celiac disease, and a range of mental and emotional problems.
4. What is the average lifespan for a person with Down syndrome?
ReplyDeleteThe average is around 60 years old today. In 1983, it was 25.
5. What help groups and mentor programs are available for anyone with Down syndrome and their families?
A great mentor program that begins in middle school and high school and has clubs in colleges is Best Buddies. They partner with intellectually disabled in the community and hang out with them on a weekly or monthly basis. It also allows other intellectually disabled in the community to meet each other as well. James Madison has its own Best Buddies club and reaches out to hundreds of intellectually disabled in the community.
They could also join a Down syndrome local support group so that they can hear other families experiences and learn from them.
There are many organizations that are provided through the national down syndrome association. Going online can really benefit one who is interested that way you can focus on your area.
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?
Since Michelle is in her mid-twenties and finished with high school now, Pam and Brian decide to put her in a group home. Michelle wanted that too, because she wants to have her own apartment or room to take care of. The group home would provide her a day job, have constant care, and potentially be paired with a Best Buddy who comes to visit and would get Michelle active in the community. Pam and Brian would also stay active in her life and see her very often, while also bringing her home once in a while. Ultimately, Pam and Brian agree to put her in a group home so that she can gain independence and have a more normal life.
Citations:
Pulsifier, M., & Friedlander, R. (2012). Mental Health Issues and Down syndrome: What Are the Major Mental Health Related Concerns in Person's with Down Syndrome? Retrieved July 13, 2014, from http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Mental-Health-Issues--Down-Syndrome/
What Conditions or Disorders are Commonly Associated with Down Syndrome? Health and Research. (2014, May 9). Retrieved July 13, 2014, from http://www.nichd.nih.gov/health/topics/down/conditioninfo/Pages/associated.aspx
http://www.bestbuddies.org/
1. After a medical Crisis, do teenagers/young adults with Down syndrome regress in their skills?
ReplyDeleteYoung adults with DS do regress in their skills after a medical crisis. According to the National Down Syndrome Society, the common difficulties are present in a young adult with DS facing medical problems: “Depression, social withdrawal, diminished interests and coping skills, generalized anxiety, obsessive compulsive behaviors, regression with decline in loss of cognitive and social skills, chronic sleep difficulties, daytime sleepiness, fatigue, and mood related problems (raising concerns of co-existing sleep disorders and sleep apnea)” (Pulsifier, 2012).
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?
Pam could learn all that she could about the atrioventricular Septal Defect that her daughter has. She could learn about all the signs of reoccurrence or another heart disorder that could occur after this surgery. She could do this by talking with her daughter’s doctor and also by seeking other medical advice about the medical issue her daughter faces. Pam should talk to her regular doctor about how upset she and how she blames herself for her daughter’s illness. The doctor can recommend talk therapy, counseling, or medication. However, the best thing to do for Pam would be to seek professional help to realize why she was unaware for so long and went so long without seeking medical help for her doctor. I think that it would be more beneficial if she could get to the root of that to better her and be well equipped with being able to put her daughter’s health first from now on.
3. How common are heart troubles for teens/young adults with Down syndrome? Are there any other medical conditions/issues that could also occur?
According to the National Institute of Child Health and Development nearly half of children born with Down syndrome are born with a heart defect as well. Other medical conditions that could also occur are as follows: vision and hearing problems, infections, hypothyroidism, blood disorders, hypotonia, upper spine issues, disrupted sleep patterns or sleep disorders, gum disease and dental problems, epilepsy, digestive problems, celiac disease, and a range of mental and emotional problems.
4. What is the average lifespan for a person with Down syndrome?
ReplyDeleteThe average is around 60 years old today. In 1983, it was 25.
5. What help groups and mentor programs are available for anyone with Down syndrome and their families?
A great mentor program that begins in middle school and high school and has clubs in colleges is Best Buddies. They partner with intellectually disabled in the community and hang out with them on a weekly or monthly basis. It also allows other intellectually disabled in the community to meet each other as well. James Madison has its own Best Buddies club and reaches out to hundreds of intellectually disabled in the community.
They could also join a Down syndrome local support group so that they can hear other families experiences and learn from them.
There are many organizations that are provided through the national down syndrome association. Going online can really benefit one who is interested that way you can focus on your area.
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?
Since Michelle is in her mid-twenties and finished with high school now, Pam and Brian decide to put her in a group home. Michelle wanted that too, because she wants to have her own apartment or room to take care of. The group home would provide her a day job, have constant care, and potentially be paired with a Best Buddy who comes to visit and would get Michelle active in the community. Pam and Brian would also stay active in her life and see her very often, while also bringing her home once in a while. Ultimately, Pam and Brian agree to put her in a group home so that she can gain independence and have a more normal life.
Citations:
Pulsifier, M., & Friedlander, R. (2012). Mental Health Issues and Down syndrome: What Are the Major Mental Health Related Concerns in Person's with Down Syndrome? Retrieved July 13, 2014, from http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Mental-Health-Issues--Down-Syndrome/
What Conditions or Disorders are Commonly Associated with Down Syndrome? Health and Research. (2014, May 9). Retrieved July 13, 2014, from http://www.nichd.nih.gov/health/topics/down/conditioninfo/Pages/associated.aspx
http://www.bestbuddies.org/