Week Eight

At the age of 30, Kaylee decides to take over Fred and Sally's business. Fred and Sally give her lots of advice before handing over the business. They suggest taking classes at the local community college to get a degree in horticulture. This will give Kaylee a better understanding of what she does every day with produce and plants in the garden and how it will affect its growth. Kaylee also decides to move into Fred and Sally's house so that she can constantly be surrounded by her work. She decides to move in to their house with Tim because she is ready to get married and start her life with him. She also decides to apply for a driver's license in the state of Pennsylvania to give her a more independent lifestyle.

            Taking over Fred and Sally's business is very overwhelming at first so she gets lots of help from Brody and Tim. Brody and Tim help out the horticulture business while Kaylee begins to take classes at the local community college. Even though Brody and Trish insist on paying for most of her classes at community college, Kaylee has saved up enough money to pay for her entire course load her second year of college. While taking horticulture classes, Kaylee meets Jack and Lizzie who are interested in helping out and volunteering with her horticulture business. With Jack and Lizzie's help, Kaylee is capable of taking classes full time and only working with the business three days a week. Living with Tim is a huge blessing to Kaylee because she is able to concentrate on school while he pays household bills. She contributes about 30% of the finances for the house each month. By the time she is 32, Kaylee graduates with an Associates degree in Horticulture Studies. She excels in all her classes due to all the practice she has had working with Fred and Sally. The workload is hard, but Tim's support helps her stay focused on her studies.

            After two years of living together, Kaylee and Tim get married in a beautiful vineyard surrounded by friends and family. Kaylee and Tim are both 32 years old. As a wedding gift, Kaylee's family gives her a brand new car! After failing her driver's test three times, Kaylee finally got her driver's license but has not been able to drive because she has had no car. Having a car will finally give Kaylee the independence to live all on her own. Taking the city bus every day since moving to Pennsylvania has taught her to appreciate everything that she has and shown her responsibility and the importance of time management.

            After the wedding, Kaylee and Tim settle down into their new life. Kaylee is working full time again with her horticulture business and now has the support of Jack and Lizzie too! Jack and Lizzie decide to become co-owners of the business as well after volunteering for two years. Financially, this takes a small toll on Kaylee but Tim has been very successful financially in his business endeavors and has no problem taking over the bills on his own. Their first years as a married couple are very quiet and comfortable. Kaylee continues to work every day in the gardens and learns more and more about the horticulture business. Jack and Lizzie still help out daily with the gardening duties but team up on the finances of the business. Kaylee takes charge of making sure all gardening jobs are completed daily and orders new shipments of seeds for the plants and fruits and vegetables each week. The business is successful for five years after Kaylee and Tim are married but eventually becomes too much for the couple. Jack, Lizzie, and Kaylee part ways after seven years of working together. They continue to stay friends but the business dissolves and the co-owners split the earnings.

            The end of her horticulture business ends up benefitting Kaylee financially and she begins to think about starting a family. She is 37 now and fears that she is running out of time to have a child. Kaylee and Tim try for about a year to get pregnant but are unable to. At the age of 37, Kaylee visits her doctor who tells her that because of her diagnosis with Fetal Alcohol Syndrome, it is very likely that she is infertile. They decide to save up their money and try in vitro fertilization and after several tries, one of Kaylee's eggs become fertilized! Kaylee is 38 when she becomes pregnant. Kaylee and Tim are thrilled and can't wait to start their family. After the egg is inserted into Kaylee, she has a very troublesome pregnancy. She is often in pain and even goes into false labor during her second trimester. During Kaylee's third trimester (34 weeks pregnant), Kaylee feels a pain very similar to the false labor and is rushed to the hospital. Kaylee gives birth to a beautiful, healthy baby girl but unfortunately, the amount of strain that labor has put on Kaylee's heart is too much for her body to handle. Kaylee also suffers from deep vein thrombosis in her legs, which causes the formation of a blood clot that eventually moves up into her lungs causing a pulmonary embolism. Even though the baby is born healthy, Kaylee's body is too weak to fight off the clot and eventually causes her death. Kaylee's parents and Tim are heartbroken by her death and decide to name her baby girl Savannah Kaylee James, in honor of her late mother. Kaylee's doctor informs the family that Kaylee is three times more likely to suffer from deep vein thrombosis and pulmonary embolism due to her congenital diagnosis of Fetal Alcohol Syndrome.

            Socially, Kaylee had been very confident and comfortable with her family and friends that surrounded her before she died. Being married to Tim gave her so much joy and confidence in herself. She felt independent in her life with Tim and enjoyed life to the fullest each day.

            Cognitively, Kaylee was a little behind those of typical development. Kaylee did deal with concentration problems but found that it was very helpful for her to listen to light classical music to keep her focused on schoolwork or in the gardens. Her memory was short sometimes but she found that writing short reminders on sticky notes around the house helped ensure that she accomplished all her daily tasks and household chores.

            Kaylee lived a full and happy life and died at the age of 39. Tim raises his new daughter Savannah to accept people of all backgrounds and lifestyles and to never judge a person due to illness or disorder. He teaches her about the importance of perseverance through hardships and even incorporates the practice of gardening into their lifestyle every day.

            When Kaylee died, she was still extremely small which caused her pregnancy to be much more difficult. Carrying the weight of a baby was very hard on her weak body and caused her a lot of back pain and exhaustion. Physically, Kaylee was still very healthy but pregnancy complicated her health much more. Having Fetal Alcohol Syndrome increased the likelihood of pregnancy complications and ended up causing her death.

Week Seven

            Kaylee's parents decide that Kaylee's best option is to move in with her best friends, Ashley and Emily. Ashley and Emily are very aware of Kaylee's disorder and understand that Kaylee might need some help taking care of herself on her own. They are also very patient and supportive of Kaylee. Brody and Trish believe that Kaylee is best off living with her best friends who can help her out on occasion and make sure that she is living a healthy lifestyle. This will also give Kaylee more freedom and independence to live on her own without feeling like her parents are always watching over her.

            Kaylee is very excited to live on her own with her best friends! She feels much more independent and grown up. Kaylee, Ashley, and Emily move into a three-bedroom one-story house in a quiet neighborhood near Fred and Sally's house so Kaylee can easily walk or ride the local city bus to work. There is also a supermarket and a few volunteer locations nearby for Kaylee to easily have access to. Once Kaylee starts living with her friends, she begins to experience life in a more independent fashion. Her biggest struggle is cleaning up after herself in the kitchen and doing laundry. Luckily, Ashley and Emily are very supportive and hold Kaylee accountable for keeping the house tidy and her chores done.

            Kaylee continued to work every day with Fred and Sally. Saving money came like second nature to Kaylee and hardly ever spent money on anything other than groceries and necessities. Kaylee found a sense of self and purpose when working at Fred and Sally's home and connected with the couple in a very intimate fashion. Fred and Sally also became very close with Kaylee's parents. They would give Brody and Trish monthly updates on Kaylee's performance at work and brought up any problems that arose. All in all, Kaylee felt very at home with Fred and Sally and loved working in a garden planting flowers and cultivating new plant life.

            As Brody and Trish began to settle into their new life in Pennsylvania, they found that inviting Fred, Sally, Kaylee, Ashley, Emily, and Tim over every Friday night for dinner helped form a sense of family and community for Kaylee. This also gave Brody and Trish a chance to get to know Kaylee's friends and boyfriend a little better. Trish also became pregnant with her second daughter, Megan, one year after moving to Pennsylvania. Brody and Trish are thrilled to have another daughter and give Kaylee a new baby sister. Kaylee was so excited to be a big sister to Megan and loved babysitting and taking care of her whenever she can.

            Kaylee thrived in her new life in Pennsylvania and enjoyed her relationship with Tim very much. Tim also was very aware of Kaylee's abilities and disabilities and loved her for exactly who she was. This also gave Kaylee confidence in herself and her first experiences with romance, intimacy, and commitment. Tim and Kaylee became engaged after dating for five years. Kaylee continued to be very hesitant on getting married any time soon but felt very comfortable in her relationship and excited to spend her life with Tim. Trish and Brody also feel much more comfortable with Kaylee's romance with Tim after spending time with him weekly and seeing how much he cares for Kaylee. They believe that he is capable of taking care of Kaylee and is very prepared for the daily struggles that Kaylee has to deal with due to her disorder.

            Because Kaylee continued to be so successful at work, she decided to start her own garden at her home with Ashley and Emily. Ashley and Emily are very supportive of Kaylee's new venture with her garden and help her pick out fruits and vegetables that she can grow at home. Kaylee began to grow all types of fruits and vegetables at home and even give some away to her friends and family nearby. Her interest in horticulture continues to grow and spread to all aspects of her life.

            Physically, Kaylee grew to be below average height and weight but practiced a healthy lifestyle. Growing fruits and vegetables organically taught Kaylee how to eat a healthy and balanced diet. Also, tending to her garden and working at Fred and Sally's every day incorporated physical activity into Kaylee's routine. Although she is small, she grew strong and healthy. Kaylee also learned more and more about personal hygiene practices and how to take care of her body in a healthy manner by living with supportive friends, going to work every day, and growing closer to her boyfriend, Tim. Developmentally, Kaylee grew to be independent. Physically, she has grown strong despite her weak bones and small stature.

            Cognitively, Kaylee has learned how to use critical thinking and logical reasoning by relating it back to what she has learned from her experience with horticulture. Horticulture has helped her learn how to use her brain efficiently and stay focused on her tasks at hand. Watering plants daily and working routines into her daily life have taught her about the importance of responsibility and perseverance. Learning about plant life and horticulture has also taught her about critical thinking and how to solve problems even when things aren't black and white. Making daily decisions at work about plant life and how to ensure growth has taught her more about cause and effect and how responses occur from stimuli. Developmentally, Kaylee is not exactly in the same cognitive realm as some of her peers but horticulture helps her learn more about responsibility and challenges her brain to think outside the box.

            Socially, Kaylee is still thriving. Living with her best friends gives her confidence and a sense of well-being. She enjoys talking with her friends after work and telling them about her day. She also enjoys watching movies and TV shows with her friends at night. Being with Tim has also given Kaylee more confidence and self-esteem. Because of the tight-knit community that Kaylee has found in Pennsylvania with her family, friends, and employers, she has continued to grow in a very positive way socially and emotionally.

            By the time Kaylee is 30, she has made good money working for Sally and Fred. When Sally and Fred decide to retire and move south, Kaylee is heart-broken and feels very lost. Tim begins to inquire about when she will be ready to marry him and start their life together. Katie feels that now is a good time to marry Tim but is unsure of what career options are available for her after the wedding. Trish helps Kaylee look for more horticulture jobs available but nothing local seems to be hiring. Tim's job as a chemical engineer makes a lot of money as well but Kaylee is hesitant to drop her job in horticulture altogether.

Decision Point: Does Kaylee decide to look outside her local town in Pennsylvania for horticulture jobs and possibly move away from her friends and family or does she decide to stay at home while Tim works every day?

Questions:

1. What other options besides horticulture jobs are available for Kaylee?

2. How much is the average salary income for individuals in the horticulture industry?

3. As Kaylee gets older and begins to consider a marriage and life with Tim, she might want to consider have children. Do individuals with Fetal Alcohol Syndrome typically have trouble with fertility and getting pregnant?

Week Six

As Kaylee entered senior year, Trish and Brody set up a meeting with her IEP team to get suggestions of different options for Kaylee’s future after high school. They feel that she should continue her passion with horticulture because they have seen tremendous improvements in her behavior as a result of it. However, they agree that because she is leaving school, it doesn’t mean therapy and learning should stop. There are options for her to grow as an individual cognitively, socially, behaviorally, and physically. A member of Kaylee’s IEP team mentions that a student of their school in the past entered a program where they continues therapy in any areas necessary but they were also learning many life skills (such as cleaning, cooking, going to the store, etc.). This could be a great opportunity for Kaylee to continue her therapy. In addition, they would teach her proper ways to conduct herself in a work environment and the proper social rules and cues to follow. This would give Kaylee the option to meet new people, develop in various ways, and continue her passion with horticulture. Trish and Brody were very glad that they set up the meeting with her IEP team. They left feeling like they had a plan for Kaylee’s future and that she would get the best care possible. The next step was to look for programs around them and to find Kaylee a job in horticulture. As Trish and Brody went home, they sat down with Kaylee and explained to her what their plan was. She seemed very excited especially to find a job. She has wanted a bit more independence and this will be a great learning experience for her socially and will help her earn some of her own money (which she was very excited about).

As Kaylee finished up her senior year her IEP reflected on her development. She made some great progress socially, with the help of her best friend Taylor! Kaylee’s speech continued to need work, especially with creating complex sentences. In addition, as Kaylee would get more and more excited about something (usually about movies, shows, and horticulture) when she was talking to her parents or Taylor she would mix words together and become less intelligible. This proved to be a consistent problem as Kaylee became more social. Her speech therapist worked with her with different strategies to use when she starts to get increasingly excited. She gave her more appropriate ways to use inflection in her voice to show how excited she was about something and taught her how to breathe and pause at appropriate times. In addition to her therapy, her speech therapist has been in contact with her new speech therapist at the school Kaylee will be attending in the fall. Therefore, her speech therapist can pick up where Kaylee’s current SLP left off.

Trish feels completely happy about the progress Kaylee has made, especially in the past year. Trish said that having Kaylee take classes at the Vocational Technical School was the smartest thing they have ever done. Her whole life has changed as a result. She is much more social and affectionate with her parents, she is happier now that she has a true best friend, her behavior problems are decreasing, and she has found something she is really passionate about. They decided to send Kaylee to a school called “The Pathway School” in Pennsylvania. Because the school is far from where they live now, Trish and Brody are going to move to PA in a little house or apartment while she is in the program for two years. This will not only be a great start for Kaylee but it will also be a great start for Trish and Brody. They also feel like it will decrease her behavioral problems. She tends to misbehave more when she doesn’t see her parents for an extended period of time, so this will help and will allow them to be there with her as she progresses though the program. Trish however is worried that Kaylee will struggle now that she and Taylor are apart. But, Brody reassures her that Kaylee will find a friend just like Taylor at this school. Trish continues to try to convince Taylor’s parents about Taylor attending the same school.

As the family is very excited about their new beginning, they are also sad to be leaving behind friends and family. As they venture to Pennsylvania, they notice the beautiful mountains and friendly people and they feel more at ease. Brody had come down the month before and already picked out a small ranch style house for them, they began moving in. After days of unpacking and setting up their new house, they finally were settled in. Trish loved her house and her neighbors were so friendly, she began applying for jobs and she was also able to put in an applications for Kaylee to work in the horticulture business. Luckily, she heard back the next day from a place and she landed the job. Kaylee was so excited and Trish finally felt like things were falling into place for Kaylee. Trish sat down with Kaylee’s boss, Fred, and talked to him and his wife, Sally, about her condition and some difficulties she has. They were completely understanding and they felt like this would be a perfect job for her and they saw how passionate she was.

Fred and Sally became Kaylee’s second family. They loved her like she was his own. This made Trish and Brody feel much more secure and made them happy to see people really enjoying Kaylee’s company. Kaylee loved The Pathway School. She made so many improvements with speech, behavior, social barriers, etc. In addition, she had met a great group of friends that she really connected with. She loved going to school and work and she finally seemed really happy. She also made such a deep connection with her therapists and teachers at the school. One thing they instilled in Kaylee was a love for volunteer work. They showed Kaylee how rewarding volunteer work was and now Kaylee volunteers all over the place because she loves helping people. This has really improved Kaylee’s social skills and her speech. After two years of attending The Pathway School, Kaylee officially graduated at the age of 21. She was very sad to leave her teachers but she made a great group of friends (Sam, Tim, Ashley, and Emily).

Kaylee continued to work at Fred and Sally’s and continued her volunteer work. She progressively was given more responsibilities at work, and this really excited her. She also was given bonus checks for when she had good behavior and did excellent work. Kaylee did a great job saving her money and Trish and Brody saw how independent she was becoming. Kaylee continued to spend time with her friends and as she did that, she began to have feelings for Tim, and he felt the same way. She told her parents after a while of going out on dates and spending time together that they were boyfriend and girlfriend. Although she was 21, Trish and Brody were very concerned. They never has to really deal with the fact that she like a boy. They needed to talk to her about it but wanted to do it the right way. In addition, at 23 years old Kaylee wanted to get her own apartment with the money she had been saving since a lot of her friends lived independently. She had learned a lot of the skills in school however Brody and Trish were very unsure about this, they assumed Kaylee would be living with them forever. They told her they would think about it and let her know. This frustrated Kaylee but she understood.

As Kaylee turned 24, she and Tim had been dating for 3 years. She had started to get serious and he said he wanted to marry her. She was so excited but she said she wanted to wait a little longer and save more money. Kaylee’s parents were still apprehensive because they had never thought or prepared themselves for these types of situations. They were happy to see Kaylee so happy and in love but also realized she is not fully capable to take care of herself. They didn’t see how she would be able to handle the responsibilities and stress that come along with marriage.

Decision point: Does Trish and Brody allow Kaylee to find her own apartment or do they try to find another alternative (for example, a group home)?

Questions:

What are some additional skills and therapy Kaylee could learn and participate in at a program, for example at The Pathway School?

How much does The Pathway School cost?

What is the proper way to talk to Kaylee about relationships and sex education?

What are some housing options for individuals with Down syndrome?

Week Five

After having numerous meetings with Kaylee’s special education teachers, mainstream classroom teachers, and her guidance counselor Trish, Jody, and Brody all decide that it is best to keep Kaylee in the mainstream classroom even though she is having a difficult time socially. It is important for Kaylee to still be surrounded by her peers. In addition, Kaylee will learn through observation of what proper social cues and rules are and she will have more stimulation to proper speech and language. This could aid her in developing better speech patterns which will in turn help in her reading development. Jody and Trish feel confident about the decision they have made but they think it is very important that Kaylee works on social rules, social cues, and behavioral triggers in order for her to be successful in developing friendships. Therefore, as Katie enters middle school her grandmother, Mom and Dad all meet with Katie’s new IEP team to discuss goals and proper accommodations that may be necessary in order for Kaylee to be successful in the next 3 years.

Trish has been much more involved in Katie’s life now that she feels she is mentally stable. She feels very blessed to have such willing and helpful parents and that Kaylee’s father has been very helpful and involved. Trish continues to work on her teaching degree and will hopefully be finished at the end of the year. It has been helpful for Trish to be involved in other groups and activities in order to remain at a mentally stable place in her life. She has begun to take adult pottery classes at the same place where Kaylee takes classes and she attends weekly group therapy for mothers who have a child with a disability. Talking about her concerns and doing something that makes her happy has really brought out a different side of Trish. Because of this, Kaylee seems much calmer and ever happier. This made Trish wonder if some of Kaylee’s behavioral problems stemmed from Kaylee realizing that Trish was going through a tough time.

Now that Kaylee is in middle school, it is imperative that she has an IEP team that will help her be as successful as possible and help her develop in any way she can. One of the main objectives is to come up with short-term and long-term goals for Kaylee and also talk about accommodations for her in the classroom. Kaylee’s IEP team consists of her special education teacher, her mainstream teacher, her speech pathologist, her occupational therapist, guidance counselor, and reading specialist. They feel that a lot of Kaylee’s tantrums are as a result of her frustration in the classroom because she does not understand what is going on and she is full of energy. Confining Kaylee to one area and one room all day caused her to be very disruptive and resulted in her developing problems with her peers. They feel that because she is in middle school now and she changes classrooms more often that she will not feel as agitated. In addition, they think it would be beneficial to extend her test taking time and give extra help or less options on more challenging subjects since her classes are much more difficult this year.

Kaylee’s speech and language has been progressing. At the end of 5^th grade, she at a 3^rd grade reading level. This indicates that she may have an easier time with some of her classes this year because she now is able to read in order to learn the material whereas she was previously learning to read. However, the reading specialist is going to continue to work with her. One suggestion that was made during the IEP meeting was for the reading specialist to take her assignments and tailor them to a 4^th grade reading level. She will have a better time comprehending it and it is still a challenge where she is learning. Trish and Brody really liked this idea and felt that the whole IEP team was really coming up with ways to individualize Kaylee’s personal needs. Kaylee’s MLU is not quite where her peers are, in addition they are able to create much more complex sentences. Kaylee is able to create a complex sentence but her length of her sentences are not as great. In addition, Kaylee has trouble understanding prefixes, suffixes, word roots, plurals, and singular. This is something she has made leaps in understanding but she still has work to do. This proved to be a challenge when she needed to create a story about a little girl living in a city in Mexico. Kaylee and her team worked on researching about Mexico and the culture and Kaylee knew what she wanted to write about, but she has trouble correctly stating words, adding word endings, and making it present or past tense. Although it was a challenging experience for Kaylee compared to the other kids in the class, she was able to learn a lot about proper grammar when writing.

As Kaylee progressed through middle school she still seemed to struggle with friendships. Although her behavior was more controlled than in elementary school, she was still throwing tantrums and she was still not picking up on typical social rules and cues. A lot of emphasis of Kaylee’s therapy throughout middle school was based solely on academics, speech, and OT. However, not a lot of the therapy was placed on social aspects that Kaylee seemed to struggle with. As she entered high school, it was very important for Trish and Brody to figure out possible solutions to help Kaylee socially.

Kaylee had made huge leaps academically throughout middle school. She was only about 1 grade level behind in her reading and was speaking much more intelligibly. Compared to her peers, she was still having trouble but she was making progress. Kaylee was really taking the time when she was talking to stop and breathe and think about what she was going to say next. Her clustering disorder had not seem to be an issues, except when she was put in anxiety-like situations. This led to frustrations which ultimately led to a behavioral outburst. Because Kaylee was still having behavioral problems, her doctor did not want to take her off her medications. He was afraid that taking her off her medication may prove to be more harmful than good.

Physically Kaylee was very short compared to the average individual that was 15 years old. She was 4’10 and weighed under 100 pounds. However, she could grow and had grown about 3 inches in the past year but the doctors are not sure that she would continue to grow much more. Katie needed to continue to go to OT for some deformities in her limbs that seemed to give her some problems as she started to grow. In addition, because of her low weight, her doctor recommended her seeing a nutritionist to make sure she is at least getting the proper food groups in and that she is eating things the strengthen her bones and foods that can help calm her.  Brody and Trish were very willing to take these steps in order for Kaylee to be healthy. Brody and Kaylee’s relationship has grown and Brody and Trish have been doing a lot of research about Kaylee’s condition in order to help her. One thing that Brody has realized is that involving Kaylee in more hands- on activities (like the pottery) can help her grow socially and academically. Therefore, as Kaylee entered 10^th grades, they decided to sign her up to take classes at the local vocational technical school that is affiliated with her high school. This seemed to be a great idea and Kaylee was very excited about it she decided to take classes learning about cosmetology and horticulture. This had proven to be a very successful decision made by Kaylee’s parents. Everyday Kaylee came home from school, she had stories and stories talking about what she had done during the day. In addition, she asked her mom if she wanted to plant a garden with her that summer. Trish was finally feeling like Kaylee had found her niche and she seemed like a very happy young girl. The best part about the whole experience is that Kaylee met a group of girls in her cosmetology class that she really enjoyed and she had a new best friend named Taylor that was in her horticulture classes with her. Kaylee was starting to really feel like she was fitting in and her parents and IEP team realized that she was also behaving much better.

As Kaylee entered her junior year in high school she seemed to be very excited about her upcoming year. However, her classes were starting to become increasingly difficult. As her peers were preparing to take the SAT, Kaylee was becoming more confused about her future. She still lagged behind cognitively, she was having minor issues socially, her speech and reading was certainly not perfect, and she seemed to have more problems with her hearing. Brody and Trish wondered what to do about Kaylee’s future. They see how well she is doing in her vocational classes but they worry about her future beyond high school. They saw drastic improvements from Kaylee within the past 3 years but they feared that more problems would arise or she would regress from the improvements she has made. Trish wanted to do more research but wondered if it would be beneficial for Kaylee to start another type of program for individual with learning disabilities and behavioral disorders. She feared that this would be something Kaylee would not want to do and would in turn cause Kaylee to throw tantrums.

Decision point:

Do Trish and Brody enter Kaylee into a program after high school for individuals with learning disabilities and behavioral disorders or do they let Kaylee look for jobs in horticulture while she continues behavioral therapy on the side?

Questions:

1.       What is a vocational technical school?

2.       What kind of jobs can Kaylee get in horticulture/florist? How much would she make?

3.       What is the true definition of a clustering disorder?

4.       Can a mother’s reactions/behaviors impact a child’s behavior? For example, was Trish’s depression a possible factor in Kaylee’s behavioral outbursts?

Week Four

            As Kaylee enters fourth grade her family has made the decision to keep her on ADHD medication. The doctor says that it is most effective after a few years of use and he recommends keeping with the same course now and observing her progress. They can revisit the possibility of taking her off her current prescription in the future, preferably in her middle school years. The behavioral methods put in place in the first and second grades are still proving useful though the fourth and fifth grades. The picture schedule still serves as her most important tool for maintaining focus through the day. As she gets to the fifth grade the teachers allow her to take an active role in planning the schedule. She gets to have a say when certain activities are done as long as she puts it on the board.

            In school, Kaylee is progressing at a pretty consistent rate, although much slower then her peers. Her reading level is at a steady second grade level. She has special education reading classes in the morning because that is when her attention span is at its best. Teachers and doctors attribute this to the fact that she takes her ADHD medication in the morning. Her math is also improving as she has a better understanding of basic arithmetic skills such as addition and subtraction. Her lessons are always assisted with visual aids. Her books still have a heavy amount of illustrations and in her math problems the numbers are accompanied by picture representations. She is becoming much faster at calculating the problems. 

            It is her speech and language that is making the biggest strides in improvement. Her lexicon has made leaps and bounds and she now has the vocabulary of about a third grader, though she still has to work harder than others to put it to good use. A new diagnosis has been made as well. The school SLP’s have agreed that Kaylee is a clutterer, which is a common coexisting condition with both ADHD and Fetal Alcohol Syndrome. Cluttering is a thought organization disorder, characterized by difficulty organizing thought to put into a coherent expression, frequent revisions, stops and gaps in speech. The biggest difficulty with cluttering is that, unlike its sister disorder stuttering, the individual usually is completely unaware that they are doing it. There is no clear understanding of what exactly causes this issue and it is more difficult to treat because of the fact that Kaylee is usually unaware that she is doing it. With therapy she is beginning to be able to slow down, take a breath and clearly state what she is attempting to without going around in circles.

            A major improvement in Kaylee’s life is that peace seems to reign at home. Her father has finished his degree and got a decent paying job. He has been able to financially provide for Kaylee and now that he no longer has school he can spend more time with Kaylee on the weekends. Trish has also maintained mental stability. She is now going back to school to finish her degree. Kaylee’s grandmother is also in remission.

            In fifth grade her reading levels make it to that of a third grader, which is a huge achievement for someone with Kaylee’s diagnosis. Her math is improving in speed, but has hit no major milestones again and she is still doing basic arithmetic. She is gaining better control of her speech but it requires a lot of work. She has gotten much better at following directions and focusing on tasks.

            Kaylee is still spending a lot of time outside of school in her art therapy and pottery classes. She even had some of her art displayed at the local library kid’s art show.

One of the problems beginning to really emerge is in her social life. Kaylee often cuts off other kids by speaking over them or completely changing the topic when another kid is in the middle of talking to her. When they were younger they did not notice or take as much offense to it because all little kids have the tendency to overstep those bounds. Now that they are older though, it is beginning to put a distance between Kaylee and her mainstream classroom. This is causing Kaylee to have poor self-esteem accompanied by frequent fights with her classmates. On one occasion Kaylee got so angry she ended up pushing another child.

            Kaylee’s parents are becoming exceedingly worried about her being in the mainstream classroom but at the same time they know it is important for her to have social interaction with her peers. They are beginning to think that they should temporarily keep her in the special education classroom all day while they can find a better way for her to learn social skills outside of school. 

Decision Point: Is Kaylee placed in all day special education classroom while finding other ways to learn social skills in a less formal setting or does she stay in a mainstream classroom while attending more behavioral therapy?

Questions:

1.     Is it common for children with fetal alcohol syndrome end up being isolated by their peers?

2.     What are some other social settings that might help Kaylee learn appropriate behavior outside of school?

3.     What are the benefits of having Kaylee in the mainstream classroom?

4.     What are the benefits of keeping Kaylee in the special education classroom?

Week Three

The Morris family does accept the Adam’s offer to pay for respite care and behavioral therapy while Jody’s health condition is being dealt with.

Kaylee’s behavior seems to be improving , although no one would ever deny she is a handful. She regularly attends Cognitive Behavior Therapy. The therapist recruited the help of Kaylee’s family and teachers in coming up with a good profile of Katie’s strengths and weaknesses. Together they put together a plan to cope with and manage Kaylee’s behavior according to her individual strengths. They have found that soft environment music seems to help keep Kaylee calm or settle down after one of her tantrums. They also came up with a few simple rules for Kaylee to focus on, which will change, as she gets older and her behavior changes. Every rule must be enforced the same way, with the same negative or positive consequences. This helps to give Kaylee clear guidance and establish a pattern of behavior. They have also found that having a schedule laid out that Katie can understand helps keep Katie calm as well. Kaylee’s  calendar or schedule is comprised of pictures showing what tasks she needs to do in what order. Not only are her tasks listed on there, but her rewards and break time are there as well.  Everyone in Katie’s home and school life is keeping a journal of Kaylee’s tantrums that logs when the tantrum took place, what was the cause and how long it lasted. This helps point out any specific triggers or possible consistencies that can be minded and controlled in the future.

Now that Kaylee has been diagnosed with a dual receptive/ expressive language disorder and has ben seeing an SLP regularly, she has been making obvious progress in her communication skills. She can speak more complex sentences and by third grade she is mostly intelligible. She now sees the SLP three times a week during the school day. Kaylee seems to enjoy going to speech class because of the amount of attention she received while there. In second grade she was excited that during her trip to the Audiologist, she was told that she was old enough to pick the colors for some of the pieces of her hearing aids. When her speech had improved enough in third grade she used her hearing aid as her show and tell and could get through the basics of describing it to the class.

As far as academics, Kaylee is behind but through a lot of hard work and she is slowly but surely improving. In second grade she started to really take an interest in learning how to read. Kaylee loves animals so her teachers focus on picking out book about animals. By the end of second grade Katie’s reading level ( level at which she can read 90% of the words) is that of preschool to kindergarten. As long as her teachers pick up books that are short and hold her interest, Kaylee enjoys her reading lessons. The teachers use as many of the suggestions from Kaylee’s behavioral therapy as possible during her school day, in order to keep her focused and productive. The most useful tool so far has been her picture board calendar that now not only has pictures but brief one to two word descriptions below them. In third grade her reading level is that of the lower end of a high kindergarten or low first grade.

Kaylee is still a small child for her age and her coordination is not on the same level as the other kids her age. In third grade, her paternal grandparents decided to pay for her to take pottery class geared towards kids with special needs. Kaylee loves it! Working with the clay gives her productive sensory stimulation. They have electric special pottery wheels that are easy to control so Kaylee gets to creatively express herself without being worn out or needing much coordination. This also gives Kaylee something to work on her attention span and cope with her energy levels in a productive manner.

Trish seems to be coping much better now that she has sought intensive therapy. She has joined two support groups. One is for mothers of disabled children and the other is for people battling depression. All of this seems to be helping her cope. As a result Trish is not only taking a much bigger role in raising her child but has begun to able to focus on enjoying the seemingly small triumphs in their lives.

With all of the behavior therapy, management strategies and new activity Kaylee’s behavior is much more manageable. When she was seven the doctor’s switched her from Tenex to Intuniv, a more long-term medication for ADHD. After reading many articles and hearing all the controversy over medicating ADHD, Kaylee’s parents and grandparents are worried. They are beginning to wonder if Kaylee could manage without medication, with all of the new resources and behavior management strategies they have now and are continuing to learn. Some say medication is key, medication should only be a temporary crutch until there is a more permanent solution achieved through other means, and then there are others that’s say there should be a constant balance.

Decision Point: Does Kaylee’s family try taking her off the medication (under the doctor’s supervision) and try to manage her with the sole use of management techniques and therapies?

Questions:

1.     What are some other activities that may be well suited for Kaylee?

2.     What are some possible long-term effects of ADHD medication?

3.     What are some companies that produce books with a low reading level but age appropriate topics for older elementary/ middle school/ high school ages?

Week Two

 Kaylee is living in Richmond with her mother, Trish, and maternal grandparents, Richard and Jody Morris. Trish decided to drop out of college at James Madison University after her first year of college. Brody dropped out of James Madison University to live at home in Midlothian to be closer to Kaylee as well following his freshman year. He takes classes at a local community college at the request of his wealthy parents and works part time at a family friend's law firm. He is paid well at his job and contributes around 75% of his pay checks every week to Trish and Kaylee. Brody's parents also contribute gifts for Kaylee and financial gifts to the Morris's and Kaylee each month.

            Trish's depression following Kaylee's birth has only grown worse. She feels extreme guilt for causing Kaylee's disability and feels that the insecure attachment Kaylee has for her is her own fault. Studies show that mothers are more likely than fathers to experience depression following the birth of a child with a disability. Kaylee's maternal grandmother is her primary caretaker both physically and financially simply because Trish is very depressed and not financially secure enough to be on her own. Brody does contribute around $1500 a month to take care of Kaylee as well. Kaylee is well taken care of, even though her parents are very young and not completely financially stable. Because Kaylee is fairly spoiled by her grandparents, this tends to lead to a lack of discipline and therefore more behavior problems.

            Kaylee's physical development moves slowly. Kaylee is still much smaller than her peers at age 5. She only weighs 30 pounds and is 30 inches tall. She has a very small head with noticeably small, yet wide, eyes. The results for the vision test showed that Kaylee needs special glasses to correct her Strabismus, also known as cross-eyedness, and minor near-sightedness. Insurance will cover most of the medical expenses for these glasses. Kaylee also has a very indistinct philtrum between her nose and upper lip. Most babies learn to walk between 9 and 12 months but Kaylee first sat up on her own at 12 months and learned to walk at the age of 2. Although Kaylee was developmentally delayed, Jody was very determined to keep faith in Kaylee and tries every day to make new strides with Kaylee's walking and physical development.

            At the age of 5, Kaylee can walk and run like a typical 5 year old but her small stature and extremely slim frame is very weak and tires easily. She also has very poor coordination and is known for being "accident-prone." Although Kaylee loves to draw and paint, she has very poor fine motor skills and gets distracted quickly, once her hands tire. Jody feels extreme frustration when caring for Kaylee because of her own increasing age and lack of energy. Even though Kaylee is not as physically strong as the average five year old, Kaylee has extreme hyperactivity and can't ever seem to sit still or listen to instructions. She squirms and fidgets often at the dinner table and sometimes walks aimlessly around the house instead of following simple instructions like putting away her toys or putting on her pajamas. Most recently, usually following her frequent temper tantrums, she has been found banging her head against the couch. This self-destructive behavior is a red flag for Jody because of her own daughter's depression and causes lots of anxiety and fear for all members of Kaylee's family.

            Kaylee's inattention and impulsivity continues to be a growing problem. She often interrupts Jody or Trish while they are giving instruction and when asked to answer a question, she makes quick, thoughtless guesses instead of taking the time to come up with a reasonable response. Because her impulsivity leads her to react to unpleasant circumstances more dramatically, she throws tantrums daily and without warning. These tantrums put more stress on her aging grandparents and depressed mother. Although Brody does not see his daughter as often due to his busy schedule working and taking classes, he has often noticed that she is hard to soothe and comfort when she cries. Social gatherings are also very difficult to attend with Kaylee because she is easily aggravated when she is withheld from running around aimlessly at her leisure. Jody suspects ADHD and asks her doctor to test Kaylee for the disorder at one of her routine check-ups. The doctor determines that Kaylee does in fact have all the qualifications to receive services for ADHD once she starts Kindergarten in the fall. Because of her tiny stature and low weight, the doctor does not want to prescribe any of the common stimulants that treat ADHD such as methylphenidate hydrochloride, dextroamphetamine sulfate, dextroamphetamine/amphetamine formulation, or methylphenidate. All four stimulants have side effects that can cause loss of weight or appetite and this could be extremely dangerous for Kaylee. Instead, the doctors opt for guanfacine. Inuniv is the brand name for guanfacine, which is an antihypertensive that decreases fidgeting and restlessness, and increases attention and a child's ability to tolerate frustration. The doctor recommends that Kaylee takes Tenex instead for her first year of elementary school because Inuniv is not recommended for children under the age of 6. Tenex acts the same way as Inuniv but is known as the "short-term" version of the medication. The medication does seem to help in the mornings but wears off later in the evening around dinner time. This takes some stress off Jody, Trish, Brody, and Richard but dealing with Kaylee's disorder still causes a lot of anxiety and financial stress on the Morris's.

            Kaylee still has trouble with her language development and is seeing a Speech Language Pathologist for duel receptive and expressive language disorders. While most children are focusing on learning how to read, Kaylee is still struggling with pronouncing words correctly and understanding spoken speech. A receptive disorder means that a child has difficulties understanding what is said to them. An expressive disorder means that a child has difficulty using spoken language. They are both neurologically based and can be treated by seeing an SLP. The symptoms include not seeming to listen when spoken to, inability to understand complex sentences, language skills below the expected level for their age, and inability to follow verbal instructions. Her moderate conductive hearing loss and ADHD diagnosis both contribute greatly to her delayed language developments. She sees her SLP twice a week and makes slow but gradual progress there. She has not yet learned to read at all but is making bigger strides in comprehending verbal stories and pronouncing compound and complex sentences coherently and accurately.

            Brody's parents begin to feel guilty for their lack of support and presence in Kaylee's life once Jody is diagnosed with early onset breast cancer and must shift her main focus back to her own health and surgical removal of the tumor. Trish has become more present in Kaylee's life after receiving treatment therapy (provided by her insurance) for mothers with children with disabilities. The financial situation for the Morris's is quickly jeopardized once Jody is diagnosed with early onset breast cancer because the expenses for Kaylee's treatments (SLP, Audiologist, ADHD treatments) are relentlessly piling up. Brody's parents offer to pay for respite care and behavioral therapy for Kaylee while the Morris's deal with Jody's health condition.

Decision Point:

Does the Morris family accept the Adam's offering for respite care and behavioral therapy?

Questions:

1.     How much annually does respite care cost for children with disabilities in Virginia?

2.     What side effects might Kaylee face while taking Tenex/Intuniv?

3.     Are self-destructive habits or violent outbursts norm for children with Fetal Alcohol Syndrome?

4.     How might Kaylee perform in an academic setting once she starts Kindergarten in the fall?

5.     Will Kaylee's doctors eventually have to find a new medication to treat her ADHD and behavioral problems, as she gets older? If so, why?

Week One

            Kaylee Morris was born on September 19, 2010 to Trish Morris and Brody Adams in Richmond, Virginia as a result of an unplanned pregnancy. Trish and Brody met in one of their classes at James Madison University their freshman year of college. Kaylee was the result of a one-night stand at a fraternity party after one too many drinks to celebrate the end of their first college semester.

            Trish, who came from a modest family with strict rules, suffered from depression all through high school and was looking to make a fresh start her freshman year before she got pregnant. After the death of a close friend over winter break, Trish turned to alcohol to help her cope with her depression. She was unaware of her pregnancy until she was four months along but continued to drink heavily on a daily basis to cope with her depression. Brody was a motivated student pledging a fraternity at the start of his freshman year before Trish got pregnant.

            Kaylee was 3 pounds and 10 inches when she was born. Doctors immediately took note of her extremely small head and abnormal facial features. She was also below the third percentile for birth weight and height. After being kept in the hospital for about a week, doctors also noted that she was not sleeping enough for a newborn baby and had trouble sucking, which caused feeding problems. Kaylee had to be hooked up to a feeding tube and a breathing tube overnight to ensure she was breathing and being nourished. Before being released to go home, Kaylee was diagnosed with severe Fetal Alcohol Syndrome. There is no cure for FAS but treatment is available. Trish and Brody must take Kaylee to the doctor three times a week to check her weight and height.

            At home, Kaylee cried often and slept very little. A hearing and vision test were both recommended to her doctor due to her severe diagnosis. Kaylee passed her vision test but failed her hearing test. Her audiologist suggested a behind-the-ear hearing aid for her moderate conductive hearing loss in both ears. She grew very slowly and still only weighed twenty pounds by the time she was one month old. Trish's mother was the primary caretaker during the difficult first few months and had a lot of trouble comforting Kaylee when she cried and fussed so often. Kaylee's lack of sleep often made her much more irritable as well.

            She was still in the bottom third percentile for her age in weight and height by the time she was six months old. The primary concern became her lack of attentiveness and growing irritability. Kaylee was babbling with bilabials at six months and her language development was not stinted much by her fatal alcohol syndrome. Kaylee was very difficult to calm down when she was upset and would cry without reason often, even at the age of 8 months. Keeping her attention was almost impossible because any sound would distract her. She would also make very sudden and uncoordinated movements when trying to learn how to walk. She rarely would look anyone in the eye and seemed to have trouble pointing out pictures in storybooks. She would sometimes hit her head on visible objects and her parents started to wonder again about her vision.

Decision Point: Do the parents take steps towards determining a visual impairment; and if so, what steps?

Questions:

1.     Why is Kaylee's diagnosis considered "severe" Fetal Alcohol Syndrome?

2.     How often does the mother have to consume alcohol while pregnant to have a high chance of giving birth to a child with Fetal Alcohol Syndrome?

3.     What impact does the mother's depression have on the child?

4.     What developmental milestones during toddlerhood might the child miss due to Fetal Alcohol Syndrome.