Week Eight

            Although Crystal worries about how this is going to work out, she does agree to let Katie move in with Elizabeth above the bakery. After a few weeks she is relieved to see that this arrangement is working out very well for everybody and Katie loves life. They have a care provider come in twice a week to help with cleaning, make sure they are keeping up with their bills and also make sure they have done grocery shopping and are eating well.  In order to keep their house running smoothly, Katie and Crystal have multiple checklists posted around the house for different reasons. In the kitchen the checklist reminds them to make sure food is put away, dirty dishes are in the dishwasher and that any appliances are off/unplugged when they are done. By there door there is a “leaving the house” which reminds them to shut off the lights, turn off TV and other appliances and lock the door. The care aid also set up some organizational strategies for Katie and Elizabeth. There a hook for their keys, a mail organizer which sorts the mail into bills, outgoing and other (magazines, catalogs etc..) and a color coded calendar showing due dates, Katie’s events and Elizabeth’s events. Finally They have an emergency board which lists all important numbers and emergency procedures for a variety of situations. All of these are aided by simple and clear language, pictures and easy to follow maps when needed. Once a month the care aid goes over the emergency plans so that they stay fresh in their minds.

            Katie is still very passionate about her job at the bakery and Rosie says she is the nest worker she has ever employed. Katie is even picking up more advanced baking skills with a lot of practice and at her own pace.

            Crystal, also feels that she has reached a successful point in life. She is now head stylist and manager of the classiest salon in the area. In addition she has purchased her own town house still only a few miles away from Katie. Now that she is making better money she has invested in Long Term Care Insurance for Katie. She pays most of it but Katie was insistent on also chipping in with her own money. Although Katie is fine on her own, Crystal will not be around forever and Katie will most likely reach a point in her life where she has aged considerably and may need a more supportive environment. This policy puts Crystal’s mind at ease about the future. At 50 years old, with Katie living so independently, Crystal finally feels she can take more time to worry about her own life and relationships. She meets a man named Henry and within a year is married, Katie being her maid of honor in the wedding.

            Crystal is not the only one focusing on relationships.  Katie is always attending social events for people with disabilities and when she is 37 she meets Josh.  Josh is forty years old and also has Down syndrome. He also lives independently with a home aid that comes in a few times a week. Josh works at the local grocery store in the produce section. They have a lot in common and feel very comfortable with each other. Much to Katie’s joy they begin dating exclusively.  Even though Crystal is happy for Katie she worries about Katie’s decisions about sex. She decides to go with Katie to a doctor and family planning counselor to review sex and talk about Katie’s options.  Katie agrees to go talk to someone and Crystal can come but she wants to have one on one time with the doctor. After her appointment Katie decides she would like to get the Depo Provera shot as a form of birth control.

            When Katie is 40 Josh proposes. Katie is delighted and quickly says yes. Katie and Elizabeth are sad about not living together anymore but they will only be a few minutes away from each other as the house that Josh lives in is very close. When Josh’s parents retired they moved to Florida but kept the house so Josh could stay in it and have is In-home support. Being decently well off, Josh’s parents set aside a good amount of money for his future care costs.

            Now that Rosie is older she no longer has the energy to run the bakery. Her oldest daughter decided that she would take over instead of her mom selling it. With that she is more than happy for Katie to continue work there.

            For Katie’s 50^th birthday, Crystal and Josh throw her an amazing party with all of her friends from work, the community center and her other organizations. Her long time pen pal even flies in to surprise Katie and meet her for the first time face to face. Unfortunate shortly thereafter Crystal is diagnosed with lymphoma. She spends two years battling but at the age of 70 she passes away. Katie is beside herself with grief but with the help of the community center and friends she finds support and carries on with leading a happy and fulfilling life.

            When Katie and her home health care notice that Josh is having an extremely difficult time caring for himself the way he used to. He is much more forgetful and at times seems to be very confused. Even though Katie is pretty independent she has also needed to increase the amount of support she receives at home especially with much of the physical work such as cleaning and cooking. Now that Josh’s stability is declining there is no way she can continue with the way she is living. As part of her will, Crystal set up that any money form the sale of her townhouse would be set up in an account for the security of Katie’s future. Katie, her aid and Crystal’s executor of estate begin looking at Katie and Josh’s options for care.

            By the time she is sixty years old, Katie is living with Josh at a very comfortable assisted living community. They have doctors, nurses and domestic help right at their finger tips. They are also many activities right on-site such as exercise groups, game nights, and planned field trips. They are still granted a fair amount of independence though. Katie no longer works full-time at the bakery but a few times a month she goes in to do some baking for her own pleasure.

            Two years after moving to assisted living, when she is almost 63, Josh dies from a massive heart attack. Again Katie must move through the grief process but she still has a ton of support from friends and her new assisted living community. With Josh gone Katie moves into a smaller unit at the community to save money. Josh left her with a fair amount to live on, combined with her long-term care insurance and money from Crystal’s small but helpful estate Katie lives a modest yet comfortable life.

            At age 68, Katie contracts a terrible case of pneumonia. She is hospitalized for two weeks but Katie’s immune system is not strong enough to handle the battle. One of her lungs collapses and she is put on a respirator. Three weeks after she is admitted to the hospital, Katie’s body succumbs to the pneumonia and passes away. 

            A ton of people from the community attend Katie’s funeral. She is buried next to Crystal and Josh. 

Week Seven

       The supported employment with Tony opened up great opportunities for Katie. The one bad side about the supported employment situation is that because of how it is funded there is a time limit for how long it can go on. Katie, however, excelled at learning the necessary skills for continued work in a bakery. Meanwhile, Crystal read up on an organization called the Easter Seals. It is a non-profit organization that aids people with disabilities in a variety categories including employment. When Katie is 25 she is assigned a job developer, Stacey, through Easter Seals. Stacey helped Katie look for employment, fill out applications at other bakeries and write up a resume. After going through the typical steps to employment Katie was hired by another bakery as prep assistant and front of the house help. Katie would have regular hours and was even offered slightly above minimum wage pay. The owner, Rosie, also has a daughter with Down Syndrome who had used the Easter Seals program to secure employment. Now Stacey’s job was to discuss a plan for Katie’s employment. Stacey, Katie and Rosie agreed start Katie’s employment using a process called fading to assist Katie in adjusting to a competitive employment environment. This is kind of like the educational technique scaffolding in that a co-worker or manager will assist Katie with what she absolutely needs help with but will gradually lessen the assistance as she gets the hang of it. Due to Katie’s prior experience at Tony’s bakery she is already ahead of the game and needs very little help with her responsibilities.  Now that Katie is working regularly, Stacey’s only job is to serve as a follow up specialist. She will act as a middleman to check on how Katie is performing and any issues Rosie is finding that she could help in addressing with Katie. This new employment and collecting a hard earned paycheck gives Katie a sense of fulfillment and independence that she has never known before.

            Crystal works with Katie on managing her finances and stresses the importance of saving money. To teach Katie the importance of bills and saving Crystal sets up a rental agreement between her and Katie. Every week Katie will give a percentage of her paycheck as “rent,” Crystal then takes this money and puts it into a savings account for Katie.  Katie does not mind this as it makes her truly feel like she is being treated like an independent adult.

            Socially Katie attends regular events held by the Easter Seals and another local organization that supports people with disabilities. She attends social events such as picnics and dances on the weekends. Sometimes they go on field trips which Katie pays for using her own money. Rosie’s daughter, Elizabeth, and Katie have become great friends. Elizabeth is five years older than Katie and has a job working delivering mail at the local hospital. Katie still assists the coach at the high school, but now that she is a working-woman she does so less frequently. Another form of socialization has come from the Internet. Katie signed up for a program called e-buddies. Through this program people with disabilities are linked up with an age appropriate pen pal without disabilities. Every week Katie and her pen pal write back and forth about their lives and daily activities. This not only increases Katie’s socialization but also keeps Katie practicing her reading and writing skills on a consistent basis.

            By the time Katie is in her late twenties she has a decent savings account built up, a great network of friends (both disabled and non-disabled) and has even received three pay raises from Rosie. There is, however, a new issue on Crystal and Katie’s plate. Crystal knows that she will not be able to care for Katie forever, even though she is only in her early forties, she knows there will come a day when she can’t keep up with Katie’s housing and social needs. She is surprised when one day Katie says that she and Elizabeth want to get an apartment. Crystal was in no way thinking about this being an option. Katie explains that Rosie has a two bedroom space over the bakery, which is literally around the corner from Rosie’s house and only two miles away from Crystal’s. Rosie says that Elizabeth and Katie can stay their rent free as long as they follow some ground rules such as they are responsible for paying the small utility bills, they must each continue having a strategy for saving money and they must figure out an in-home support program with a professional, Crystal and Rosie. Katie is dying to take Rosie up on this opportunity but Crystal is hesitant. Even though she will be close and Rosie will be in the bakery every day plus they will have additional outside support, Crystal never imagined Katie would attempt living on her own like this.  Although it excites her that Katie’s life at thirty is looking much more typical then she had ever imagined it would be when Katie was born, she is still fearful of everything that could go wrong.

Decision Point: Does Crystal agree to let Katie move in above the bakery with Elizabeth or does she look into other options such as assisted living or adult residential facilities?

Questions:

1.     Assisted living and residential facilities can be expensive. What are some means of affording this if Katie should need it later in life?

2.     When people with Down Syndrome live with limited support, what are some useful strategies for making sure they practice safety and healthy habits?

3.     What are some other organizations in which Katie can access more social interaction, exercise or learning opportunities for no or limited cost?

Week Six with Addendum on 6/28

            Try outs for the gymnastics team at Katie's middle school falls during the first couple weeks of school. Because Katie is still adjusting to a new school, new teachers, and switching classrooms consistently during the day, Crystal is still very hesitant to encourage Katie to try out for the gymnastics team. Katie does eventually convince her mother that trying out for the gymnastics team is right for her. She has practiced so much over the summer and has even learned how to correctly complete a cartwheel, handstand, and a few gymnastics routines! Crystal has a change of heart and decides to support Katie whole-heartedly with her gymnastics once Katie's gymnastics instructor explains how therapeutic gymnastics can be for her. Combining social interaction, sensory integration, strengthening, coordination, sequencing, and following directions helps Katie make progress developmentally across the board. Goal-setting, such as making the middle school gymnastics team, has also really helped Katie understand the importance of determination and perseverance. Gymnastics has given Katie a sense of self-esteem and confidence in more social settings. Although Katie is discouraged at try outs when she is not as coordinated as some of the other girls, her peers still reach out to her and make her feel warm and welcomed. She is welcomed on to the team with open arms! This thrills both Katie and Crystal to know how accepted Katie is at her new middle school.

            Physically, Katie is still developing normally. She is average height at 5'1. She is slightly overweight but her pediatrician has recommended a strict diet for her to adhere to to ensure that she has a balanced diet. She still has relatively low muscle mass for her weight and height but she exercises regularly three days a week with her gymnastics team. This does seem to help and her doctor hopes that her weight will level out in the next year as she continues to grow taller.

            Academically, Katie is still struggling with reading and writing. Her IEP team decides before she attends middle school that she will see a special education teacher for both reading and writing practice. While most kids Katie's age will go to English and Social Studies classes in a general education classroom, Katie will attend a specialized class with a specialized course load to aid her with reading, basic comprehension, and narrative writing. Every morning, Katie will come to her special education classroom first and complete a journal entry log with a specific prompt designated by the teacher. In her journal entry, she will have to write about five sentences in narrative form to complete the prompt.

            Only after this hour long writing practice will Katie continue on to her math and science classes in a general education classroom. Twice a week, Katie will be joined with a special education aid to ensure that she is keeping up with her work (mostly reading and writing assignments) in those two classes.

            After her math and science classes, Katie heads to lunch where she eats with two other girls from the gymnastics team. Katie is not always included in the conversations and sometimes is upset by little comments or condescending insults directed at her by her peers.

            After lunch, Katie returns to the special education classroom where she practices reading and reading comprehension with a special education teacher. She is getting much better with her reading and enjoys all books about animals and science. Crystal also practices reading age-appropriate books with Katie at home. Comprehension is still a struggle for Katie but completing two reading comprehension questions while reading small portions at a time helps Katie comprehend the readings more fluently.

            Socially, Katie feels very accepted by her gymnastics team. Lunch still seems to be a struggle and Crystal is worried that the bullying will continue if no one steps in. When Crystal expresses her worries to Katie's IEP team, they offer to allow Katie to eat lunch with her special education classroom instead where she might feel more comfortable with more supervision.

Decision Point: Does Katie's IEP team decide that Katie will eat lunch in her special education classroom or continue to eat lunch with the rest of her sixth grade?

Questions:

1. Is it common for children diagnosed with Down Syndrome to struggle with reading comprehension?

2. What are the benefits of having Katie on the middle school gymnastics team?

3. What are the downsides to having Katie on the middle school gymnastics team?

4. In sixth grade, Katie is 5'1 and slightly overweight for her age and height. Do children with Down Syndrome tend to have stunted growth or a higher chance of obesity?

During seventh grade, Katie Jones' IEP team decides that Katie will sit in her special education classroom during lunch. At first Katie is hesitant at the idea of going back to her special education classroom during lunch because she feels rejected by her peers. But Katie soon finds her special education class to be very accepting and a source of comfort at school. Katie finds close friends in her class and enjoys being able to see her friends every day at lunch. By the end of seventh grade though, Katie decides that she wants to eat lunch in the regular lunchroom on Wednesdays and Fridays. Her IEP team agrees that since she is doing well in her classes, she should be spending time with her peers. She continues this pattern during her entire eighth grade year as well.

            Katie did well in her classes during seventh and eighth grade. She did continue to see an aid twice a week but only for two classes on Mondays and Tuesdays. Katie shined in her general education math classes both years and also enjoyed science. Writing became much easier to her, after all her practice with her journal entries, and she improved greatly in that domain. Reading comprehension and language arts continued to be a source of struggle for Katie, as well as history and geography. Katie did continue to made steady progress with her reading specialist that she saw daily though. By the end of middle school, her IEP team felt comfortable enough to make the decision to wean Katie off of seeing an aid and drop the aid altogether after her first year of high school. Katie did well without her aid for about six months before her IEP team started noticing a dip in Katie's grades. After winter break of her sophomore year, she came back distracted and unorganized since she had lost focus over the break and had no authority figure to snap her attention back to her school work. Once her grades started to drop dramatically in her language arts and social studies classes, her IEP team decided in March to bring back an aid for the remainder of the year for twice a week. This seemed to help and Katie brought her grades back up to what she was making before she stopped seeing her aid. By the end of Katie's junior year, she was seeing an aid twice a week (Mondays and Tuesdays) and making honor roll in all her classes. She enjoyed math and science the most and excelled in those general education classes. She stayed in a special education language class that focused on reading comprehension and writing as well. She struggled all through high school with her reading comprehension and adapted her middle school practice of journaling each morning. Journaling was very therapeutic for Katie and also greatly improved her writing skills. Katie had a very different academic experience than her peers because she worked with an aid and had extra help with her work. She did not take any honors classes and some of her classes took place in a special education classroom.

            P.E. was also a struggle for Katie. Although she got to see some of her friends from gymnastics, Katie often could not take part in the physical activities or could not perform as well as everyone else. Socially, P.E. was a good place for Katie to interact with her peers in a more social setting and this helped Katie develop friendships in school. Katie did not enjoy the physical activities though because it often showed Katie's physical differences and highlighted her disabilities. The health aspect of the class also taught Katie more about her body and how to live a healthy lifestyle. Katie was no longer considered overweight and her health class taught her more about how to eat healthy and practice physical activity regularly. This helped Katie develop into a healthy eighteen-year-old girl with a positive lifestyle. Katie tried out for the gymnastics team her freshman year and made the JV team. She did not perform often when the team did performances or at meets but she did get to practice gymnastics at practice every Monday and Wednesday. Although Katie's muscles were weak, she did practice basic muscle strengthening that kept her healthy. She continued to practice with the JV team during her sophomore, junior, and senior year and attended all the meets with the team.

            While in high school, Katie had been practicing good hygiene habits and preparing meals for herself with Crystal after school. Working with an aid twice a week helped instill good personal hygiene at school as well. As an elective, Katie took two different cooking and home education classes to learn how to cook simple recipes such as putting sauce and toppings on a pizza, creating healthy salads, and chopping up fruits and vegetables. Katie enjoyed learning about measuring and baking the most, and the practice of measuring out recipes came very easily to Katie. Taking a home education class taught Katie more about how to take care of herself and prepared her for life after high school.

            Being around the gymnastics team weekly gave Katie positive role models in her life that practiced healthy lifestyles. Katie met close friends on the gymnastics team and felt very comfortable with all the girls. This helped Katie develop socially and acquire a sense of self and confidence. She was encouraged daily by her gymnastics team and this really helped her performance in her academics. By Katie's sophomore year, her IEP team felt that Katie could eat lunch in the regular lunchroom without any problems. Katie sat with friends from her gymnastics team sophomore, junior, and senior year and generally enjoyed being with her friends during the day. Once and a while there would be slightly rude comments made towards her by male peers but her friends would almost always stand up for her and encourage her. Crystal felt very lucky that Katie had found such good friends in gymnastics.

            During Katie's senior year, her IEP team began to focus on a "transitioning phase" to prepare her for after high school. Although Katie had been making good grades in her special education classes and even partaking in two general education classes (science and math), the IEP team believed that college was not a good option for Katie. Crystal continued to make money but did not feel that college was a cost effective option or a realistic goal, academically, for Katie. Because of the bond that she formed with her gymnastics team, the gymnastics coach reached out to Katie and invited her to volunteer every week with the gymnastics team during practice and still attend all the meets. This option thrilled Katie because gymnastics had always been Katie's favorite part of her week.

            Katie continued to live with Crystal at home because there were not very many options available that fit Crystal's low budget. Katie liked living at home though and felt fairly independent because she had learned how to cook basic meals. Crystal and Katie bonded over cooking and often made dinner together at home. Before Katie graduated, her IEP team made specific transition goals for Katie to accomplish once she had graduated. These focused on employment and housing goals. Volunteering with the gymnastics team every week kept Katie in social settings and upbeat. Although Katie did not immediately find a job after high school, Crystal did sign her up for an educational cooking class for young adults with disabilities. The class took place twice a week at a local nonprofit organization for individuals with disabilities. Katie really enjoyed this class and met more friends through the class.  She always stayed very positive when she was around other people and seemed to find a sense of confidence, energy, and self when she spent time around her peers. Learning how to cook and bake more recipes also gave Katie a sense of independence. While most of her typically developing peers went off to college to pursue post-secondary options, Katie enjoyed a quiet life at home where she could frequently volunteer with her friends from the gymnastics team and practice cooking and baking in her class.

            The cooking class lasted for twelve months and once the class ended, Crystal was given the option to either continue paying for the class for another year (intermediate cooking class for young adults with disabilities) or Katie could begin to work with a local baker named Tony that volunteered at the nonprofit organization. Tony worked at a bakery and offered to mentor five of the young adults in Katie's cooking class. Katie would work in a sheltered environment four days a week at the bakery with four other peers with disabilities. Working with Tony would give Katie work experience and a means of financial stability. While this job would be considered a supported employment, Katie could still learn about the importance of work and responsibility. Tony would work with Katie every step of the way in teaching her how to work the machinery and bake recipes for the bakery.

Week Five

After talking to the guidance counselor at school, the IEP team decides to address the problem of bullying that Katie is facing. The guidance counselor suggests that Katie spends more time in a special education classroom where she can have more times in a supervised social setting and more supervision to watch for bullying. Katie's friendship with Lexi continues to grow and seems to give Katie a new found confidence. Lexi and Katie like to play "pretend" and reenact stories from books and movies. Lexi's friendship seems to really bring Katie out of her shell at school and strengthen her social skills. Having fifteen minute "pretend" play a couple times during the school day also helps Katie release built up energy and stay focused on her class work during lessons.

Katie works daily on communicating orally with her peers, teachers, and Crystal while with her speech pathologist. They mainly focus on story telling and how to correctly and concisely tell a narrative story. Katie's biggest issues are still on including relevant details in stories and staying on topic. Her tendency to ramble on causes her to get off track and lose focus on the story. Although her speech is almost entirely intelligible, her speech does not flow cohesively yet. This is the main focus during speech therapy every week. While most kids Katie's age are able to speak cohesively and tell detailed stories, Katie is still unable to decipher relevant details and communicate them effectively.

Math is Katie's favorite subject at school and has gotten very positive feedback from her teacher about her obvious understanding of geometry configurations. She finishes her math homework first and with little aid from her teachers. Learning about the planets in science have also really interested her. When her special education class goes to the library, Katie is drawn to the picture books that explain scientific phenomena. Although Katie is very interested in what the books say, she still needs much more assistance from her teachers with actually reading the books and understanding the concepts. Katie can read on her own, but only very short books that can hold her attention. She also only reads on a third grade level when she is in fifth grade. The "pretend" play really seems to aid in Katie's full comprehension of narratives. Without the "pretend" play, Katie rarely understands the narrative and is unable to orally communicate what happens in stories. 

Scaffolding continues to be an effective method for Katie. By highlighting exactly what words Katie needs to recognize and read on a test, answering questions that require memory becomes much easier for her. Spelling tests have also become easier since she started practicing with individual notecards. Selectively attending to each word one at a time helps her focus directly on the meaning of a word and apply it later. 

Spending time in a more supervised setting seems to have fended off most of the bullying. Katie is still taunted about her looks during lunch though where supervision is minimal. Once Katie enters middle school, the children become even more taunting and rude. Name calling becomes a bigger issue but mostly sticking with social situations where there is no more than ten children helps Katie feel comfortable. Her gymnastics classes still teach her about personal space and social cues. Once Katie reaches middle school, she tells Crystal that she wants to try out for the gymnastics team at school. Although Katie has developed relatively normally in a physical aspect, her wider facial features still seem to be a target for bullying. She also has weaker muscle mass that makes gymnastics a little harder for her. Crystal is worried that it will cause more problems with bullying and emotionally hurt Katie if she does not make the team.

Decision Point: Does Crystal encourage Katie to try out for the gymnastics team at her middle school?

Questions:

1. Do schools provide sports for students with disabilities? If so, what types?

2. What kind of activities might cater to Katie and help her develop cognitively?

3. How might Katie's IEP team change their perspectives and goals as Katie begins to hit puberty?

Week Four

Crystal decided to consult different Down syndrome specialists to see if it was a good idea to continue her inclusion in the regular classroom, while spending part of the day in the special education classroom or if she should spend all day in the special education classroom and work intensely on her therapy. Many of the specialists thought it would be very beneficial for Katie to continue her path of being mainstreamed in the classroom with a teacher’s aide available for assistance. The specialists explained that there are many benefits for Katie to be mainstreamed. For example, Katie can learn through her other peers (by imitation), she will learn what is socially appropriate and life skills, and will help her develop friendships. This will help Katie’s development in school, social settings, and emotionally. This really convinced Crystal that this was the best route to take. Her main goal for Katie is to be able to increase her development in all areas and to be as successful as possible.

                Crystal is continuing to work towards becoming a licensed cosmetologist. This has really brought joy to Crystal’s life. She feels that she is being proactive about her life and she feels that she has really found something that she enjoys doing. While in the past year she seemed to be struggling emotionally, she now feels that she has a better mindset. A lot of that has been a result of her friends helping her with Katie when she is taking classes. In addition, Katie has become good friends with a girl named Lexi. Lexi also had Down syndrome and they became friends in their special education classroom. This has really helped Katie, socially. Crystal is also very excited about the new friendship because she no longer fears that Katie will not be able to make friends, in addition, she has become very good friends with Lexi’s mom, Mary. Crystal and Mary have been able to talk with each other about their daughter’s struggles and have been able to help each other through that. To have someone who is in the same situation at Crystal is very comforting for her.            

                Crystal convinced Mary that she should sign Lexi up for the gymnastics class as well. Both of the girls really have enjoyed taking the class. As Katie’s therapists said, this would really help her with learning about personal space. Katie’s therapists were able to talk with Katie’s gymnastics instructor about how they are teaching her about appropriate social behaviors and about personal space and her instructor was going to try to focus on these skills with Katie. Through various exercises and group stretching she taught Katie to always stand an arm’s length away from the person next to you or beside you. She has been able to carry this skill into the classroom and at some points on the playground. Although, it is a work in progress. However, we are still seeing improvements. In addition, the exercise and stretching has really helped Katie, physically. She is no longer considered over-weight for her age. It has helped that she has been growing on average of 1.5-2 inches since her 8^th birthday!

                By the end of 3^rd grade, there was a tremendous amount of improvements Katie had made. However, there was also a lot of things Katie needed to continue to work on. As she was about to enter 4^th grade, Katie’s IEP team discussed the past year’s successes and things she needed to work towards. They discussed, that Katie seemed to still be in pre-operational stage of development while her peers were in a concrete operation. Katie’s wasn’t able to have a realistic understanding of the world and couldn’t seem to reason about concrete objects. In addition, she is unable to think abstractly. The school psychologist and reading specialist discussed that this was typical of children with Down syndrome; however it is important to start to work on different skills for her to learn to think abstractly and for her to realize the different aspects about the world around her. This could be done by continuing to scaffold. Katie’s IEP team discussed how they need to continue to intensively scaffold her study skills by using rehearsing and organization skills. This came up as a huge problem Katie seemed to be developing. Katie did not have the skills to selectively attend to specific assignments or exams. During spelling tests, Katie would be overwhelmed by the amount of words on the page when she only needed to know 10 of the 20. They decided to put stars by the ones Katie needed to know and to make individual notecards of each word so that she was able to selectively attend to the one word at a time.

                While most kids went through a growth spurt of vocabulary, Katie’s growth spurt was not as large. She learned new words, but not as many as peers. This resulted in difficulty with learning to read. During third grade, Katie was still learning to read, while her peers were reading to learn the material. This resulted in a difficult task for Katie’s IEP team. They needed to develop ways that Katie was able to take in the information and understand it and still learn to read. Luckily all of this was done in a way that was very exciting for Katie. While Katie went to her reading specialist to continue to work on reading, she would then get to use her “pretend” play to help her understand what she read. Katie would learn to read the story or poem the kids were reading in class, then her and Lexi would go and play with the dolls and they would use the ideas and concepts from the story in their pretend play. The IEP team came up with this idea, and it was very successful. This also was a great way for her to strengthen her social skills and work on appropriately conversing with others. In addition, Crystal told the IEP team that Katie loved movies. She watches movies over and over again and will know all of the lines in the movie. They are trying to use this as a learning mechanism for Katie’s development in speech and reading.

                As fourth grade begins, Katie’s IEP team gets together to talk about continuing to develop Katie’s zone of proximal development and to develop her goals for this year. They are happy with the progress Katie has made in the past year and want to continue to find different therapy approaches that will be beneficial to Katie. Crystal said that she has seen a great amount of development and Katie has really blossomed. However, one of Crystal’s concerns was bullying. 4^th and 5^th grade seem to be when bullying starts to become a huge problem, and Katie has had to deal with some judgmental girls and boys making fun of the way she looks. Emotionally, this has been very difficult for Crystal to see Katie upset. She loves her classmates and wants people to like her too. The school has developed new bullying approaches that hopefully will be beneficial to Katie in the upcoming years.

                During fourth grade, Katie has had to learn to communicate orally. A great deal of assignments, have been discussion based which often caused a problem for Katie. She has difficulty fully grasping the question and isn’t quick enough to gather a response. In addition, she has difficulty understand what she learned. The IEP team decided they want her to be able to eventually do this. They have the teacher write out the discussion questions and Katie takes them to the special education classroom where they give her skills to help her come up with answers and help her look for key words in the question to help her phrase the answers appropriately. Katie’s speech is intelligible however an issue they tend to run into is she is unable to put stories, ideas, and concepts together clearly. She often inserts irrelevant detail making her story very long and unclear. This has been something that has pushed kids away from her because they say she “doesn’t make any sense.” Katie’s speech pathologist suggests working on her narrative skills. In addition, Katie still has trouble classifying different parts of speech and language and is still struggling with categorization. This also has resulted in her difficulty with semantics and syntax. This is something her speech and language pathologist wants to start working towards in therapy. The better she understand the words, the better she can form her thoughts and her sentences.

                By the end of 4^th grade, Katie’s peers were able to write in cursive. However, Katie has just learned to write correctly print her letters. Katie and her OT are working towards cursive and learning the flow of correctly producing each letter in cursive.  Giving Katie extra time, less questions, and less options on tests and homework have really made her be successful in some of her classes in 4^th grade. She is learning about different factors, fraction and geometry configurations in math and seems to be doing relatively well with these concepts. In addition, she is enjoying learning about space in her science class. She often pretends she is an astronaut when her and Lexi are playing. The one issue she seems to continue to have is she has a hard time communicating in all settings and has a hard time collaborating with others. These are goals she will continue to work on in 5^th grade.

                As Katie enters 5^th grade, she is continuing to develop. Physically she is at the same level as all of the kids her age. Socially she has made huge improvements but is still struggling with the bullying. This continues to worry Crystal. She feels she needs to do something about it and fears it will interfere with Katie’s social development. Katie seems to be very happy, though. One of her favorite things to do is watch all of the Shrek movies with Lexi and practice their gymnastics at each other’s houses. Crystal finished her classes as a cosmetologist and instantly got a job at a local salon. A lot of the kids in Katie’s class and their mom’s go to Katie to get their hair and nails done, and this has really helped Crystal and Katie financially. They are at a much better place and Crystal seems to really be enjoying what she is doing. Mary even suggests that when she gets to a good place financially she should consider opening up her own salon!

Decision point: Does Crystal talk to the guidance counselor about the bullying Katie has been enduring and try to resolve it or does Crystal give it more time to see if it starts to affect Katie in her social development?

Questions:

1.       What is scaffolding?

2.       What is zone of proximal development?

3.       Is it common for children with Down syndrome to victims of bullying?

4.       What are some benefits of having a teacher’s aide in the mainstreamed classroom with Katie?

Week Three

A lot has been going on in Crystal and Katie’s life recently. With Crystal being a young mother, with very little experience with children, especially children with a disability, she has had a difficult time trying to figure out what are the best situations to put Katie in. Crystal wants to be able to provide Katie with all the services she needs in order to be the most successful individual her daughter is capable of. Therefore, Crystal continues to work towards her GED in order for her to obtain a better paying job in the future. Taking classes, working part-time jobs, and caring for her daughter has Crystal feeling very overwhelmed and confused. She lacks any type of support from her parents or from Katie’s daughter. This is leaving Crystal feeling very alone. People close to her are very worried about her and decide to help Crystal out by providing support she needs and help relieve any type of stress she may be dealing with. Crystal was lucky enough to find a part-time job with flexible hours at a local grocery store. In addition, once a week she works as a secretary for an optometrist. These two job opportunities help relieve the stress Crystal has been feeling and helps provide a more stable environment for Katie.

Katie is now entering 1^st grade. Her IEP team gets together and discusses this year’s goals and strategies for Katie to be successful in the school. They do realize that now that she is entering grade school, that the material will be much more difficult and complex than the material she was learning in kindergarten. Therefore, they need to make an effort to be constantly observing Katie and make sure she is able to be more successful. Katie’s 1^st grade teacher, Mrs. Wheeler, is very determined to help Katie in any way she can. Mrs. Wheeler is going to send home weekly notes about Katie’s progress to Crystal and will send a report to Katie’s IEP team on her progress or difficulties she may be facing.

Crystal decides to sign Katie up for the recreational soccer team. This could be a very positive experience for Katie socially and she will be able to get more exercise to obtain a healthier lifestyle. At the first day of practice, Crystal walks Katie down to the other kids. Katie’s teacher taught her how to make an appropriate introduction to kids. Katie introduces herself to the kids and they are all very accepting of Katie. Crystal was worried the other kids may judge Katie because of her disability however this was not the case. Katie did a very good job of passing the ball back and forth. However, had a very difficult time respecting the other kids and coach’s personal space. In addition, at the end of the practice Katie got frustrated and started to throw another temper tantrum. Crystal explained to the coaches that this often happens when Katie is frustrated or tired and they understood.

Halfway through the school year, Katie’s IEP team and Crystal meet to talk about Katie’s progress and difficulties. Mrs. Wheeler pointed out some progress physically and some things Katie needed to work on with her fine motor skills. Physically, gym class has been a very positive experience for her. She is able to be active and Mrs. Wheeler has noticed some weight loss, making some of the activities easier for Katie to participate in and she is at the same level as the other kids in her class. She also contributes her weight loss with the recreational soccer team and the school lunches. Katie qualifies for free and reduced lunch. The school lunches help Katie get proper amounts of food for lunch and also provides a well-balanced meal. In addition, Katie’s neighbor has a garden in her backyard full of fruits and vegetables and let’s Katie pick one of the fruits or vegetables to take with her for a snack. Mrs. Wheeler has noticed some difficulties in Katie’s fine motor skills compared to the other kids in her class. Katie still has difficulty holding a pencil and crayon and writing with it. This makes some tasks within the classroom very difficult. Katie loves to color pictures but often when coloring, Katie will hold the crayon too tight and will end up breaking the crayons. In addition, Katie is having trouble writing with the pencil. One activity done recently was to write the alphabet in uppercase and lowercase. Katie had difficulty understanding the difference between the two and had trouble holding the pencil correctly. Katie’s occupational therapy said this is something they will do intensive therapy on in the next few weeks. They discuss that Katie also needs to be working on personal space with other kids and learning appropriate social interactions. Katie has a tendency to be on the playground and will constantly hug and kiss the other kids. This is resulting in Katie having a difficult time making friends. Katie’s special education teacher discusses possible strategies in the classroom that will help Katie be more successful. Especially implementing strategies for test taking. This will help her with her cognitive development and will allow her to be on the same level as her peers.

At the end of first grade and in the beginning of second grade, Katie’s special education teacher implemented the strategies she talked about to help Katie become more successful and less frustrated. Katie now is able to have a more cognitively appropriate exam. Katie’s special education teacher was able to do this by determining her individual zone of proximal development during first grade and scaffolding her to help her better grasp the material. For example, when Katie takes a multiple choice math test she gets 3 choices while the other kids get 4-5 choices. In addition, Katie gets less questions on her exam. For example, on the multiplication test, the other kids in her class had 20 questions while Katie had 12-15. The last strategy approach was to give Katie a longer time to take the exam because with Katie’s diagnosis of Down syndrome, it takes her longer than her peers to come up with the appropriate answers. These strategies have helped Katie become more successful in the classroom and have relatively the same understanding as her peers.

Katie’s second grade teacher, Mrs. Gray, has noticed some of Katie’s strengths and weaknesses in expressive and receptive language. Katie has extreme strength areas of vocabulary and pragmatics (social interaction language). Although Katie still has a decreased mean length utterance than her peers, she socially is able to form more complex sentences when communicating. In addition, Katie is able to understand much more than she speaks. As Katie is maturing her so is her vocabulary. Her social interaction skills are very good. She uses appropriate gesture and facial expressions when she is talking to some of the girls in her class. However, during Mrs. Gray’s lessons on syntax and morphology Katie has a much more difficult time understand grammar, verb tenses, word roots, suffixes and prefixes. This could be because of complex nature. Mrs. Gray and Katie’s special education teach has realized that her test scores for receptive language are much higher than her expressive. In addition, when Katie is in class, she is able to learn vocabulary, math, and science better visually. Some computer programs Mrs. Gray uses for vocabulary and on syntax and morphology have really helped Katie improve. Mrs. Gray and Katie’s IEP team meet and talk about how crucial Crystal is in the development of Katie, especially with Katie’s speech and language abilities and reading skills. Katie is still in the learning to read stage, but next year is when they start to read to learn!

In science class, Katie and her peers are learning about different animals, weather patterns, and classifying things as living or non-living. Katie does an exercise where she is given two choices of whether an object something is considered living or non-living, and Mrs. Gray sees that this is very difficult for Katie. She sends Katie to her special education classroom where she is given more time and extra help with the worksheets. Katie’s teacher sees that she is having trouble classifying item. She also saw this when Katie had a difficult time classifying a vowel vs. consonant. Because this activity is very frustrating for Katie, she begins to throw a temper tantrum. Mrs. Gray calls Crystal because Katie has not gotten any better, and Katie is taken home. This worries Crystal of what could happen in the future when things become much more difficult. In addition, when Crystal picks Katie up from school, the principle says that she has gotten many complaints from other children’s parent’s that when Katie is not in a restricted environment and is in a more open environment, like the playground, she has a hard time interacting with the other kids appropriately and giving them their space and keeping her hands to herself. Crystal is worried that Katie is starting to regress in some of the skills her and the IEP team have worked on. This makes Crystal wonder if Katie should spend all day in the special education program and start more intensive therapy with her OT and SLP.

Crystal finished up her GED and applied to a cosmetology program to learn to cut and style hair and do manicures and pedicures. This will provide a better income for her and Katie. In addition, as Katie begins to enter third grade, Crystal decides to try to involve Katie in another recreational sport, gymnastics. Crystal and Katie’s IEP team believe this may help aid in some of Katie’s issues with personal space.

Decision point: Does Crystal have Katie spend all day in the special education classrooms to do her work and work on her therapy or does she continue with part of the day in the regular class room and part of the day in the special education classroom?

Questions:

1.       What will be Crystal’s average income as a cosmetologist when she finishes school?

2.       What is the difference between expressive and receptive language?

3.       Is it common for a child with Down syndrome to have issues with personal space and appropriate social interactions?

4.       Is it common for mothers of a child with Down syndrome to feel stressed out and alone?

Week Two

As Katie reaches three years old her mom has decided to go ahead and enroll her in a public pre-school.  Before Katie begins, Crystal meets with Katie’s education team to take an active part in developing Katie’s Individualized Education Program.  Katie’s team consists of her mainstream teacher, her special education teacher,, a speech therapist, an occupational therapist and a physical therapist.  Together they go over Katie’s current level of performance, annual goals, participation in mainstream classrooms, and participation in assessments and a tentative schedule of when and where all these things are happening.  They also explain that although Katie does not seem to need any learning assistive devices now, if in time they find she would benefit from a certain device it is the responsibility of the school to provide for it.

During Katie’s first year of pre-school her behavior becomes much more manageable with the help of the education team.  By the time she is four Katie starting to grasp the idea of potty training and making obvious attempts to use the bathroom. Later she begins being able to dress herself with very little help from Crystal.  Katie’s communication skills are also making drastic improvements. She is beginning to say more complex sentences with multiple words.  Most of Katie’s words are intelligible.

At age five Crystal begins preparing for Katie’s entrance into Kindergarten. She again sits down with Katie’s education team to come up with an updated IEP.  The professionals explain to her that at this point in Katie’s education, her goals will be very similar to other children her age. Most of the focus will be placed on growing social, communication and personal independence skills.  Her academics will be tailored for her in the special education classroom where she will get more individualized attention and work at a slower pace. 

Crystal is nervous but also very excited about Katie entering kindergarten.  Crystal has decided to take the time that Katie is in school to put towards getting her GED. She realizes that as much as Katie is going to be able to accomplish n her lifetime, she will most likely always need some form of someone caring for her and Crystal is going to do her best to give Katie what she needs. She plans on finding a vocational program after earing her GED, so that that can gain decent employment and move out of the volatile living situation she shares with her parents now.

One major concern Crystal is having about Katie, is that she is rapidly gaining weight.  She takes her to a nutritionist where she learns that people with Down syndrome are prone to obesity.  The nutritionist sets up a diet plan and encourages Crystal to get Katie involved in some sport or activity. She also makes sure they are clear that Katie’s diet has everything to do with maintaining a healthy weight and lifestyle, and nothing to do with appearance.

Crystal finds a recreational soccer club that said they would welcome Katie onto their team. Even with the kind invitation, Crystal is worried that other kids will get frustrated with or make fun of Katie. Katie is a very sweet sensitive little girl and Crystal is afraid they will hurt her.

Decision Point: Does Crystal take the risk and put Katie on the soccer team?

Questions:

1.     What athletic activities are available specifically for kids with disabilities like Katie’s?

2.     What programs or resources are available to help the kids on Katie’s soccer team better understand Katie’s disability?

3.     Sometimes healthy food is more expensive, what are some resources for providing affordable healthy meals to Katie?