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Meet Madeline The 13 year old inspiration of Life.
Introduction to Maddie’s Health Only 24 hours after birth Maddie had her very first of many seizures. Maddie was placed in the Neonatal Intensive Care Unit at Riley Children’s Hospital for 1 week. Maddie was out of the hospital for 8 days before her seizures got worse. Maddie was admitted back into Riley Children’s Hospital and spent a month and a half in a medically induced comma. This is when her doctors tested Maddie’s response to different seizure medications to help find the right balance to prevent Maddie from having seizures in the future. Maddie was diagnosed with a seizure disorder, pervasive developmental disorder, and visual impairment.
Maddie’s Big Sisters Maddie is the youngest of 3 girls. Her oldest sister Katie is adopted, and her other sister Allison as well as herself are the biological children of their parents. Katie is 17 years old and enjoys basketball, softball, and track field. Katie is also a member of the front ensemble of her high school’s marching band and plays oboe in her high school’s concert band. Allison is 15 years old and is involved in music, art, drama, and creative writing. Allison is also a member of her high school’s marching band in the trumpet section. Both of Maddie’s older sisters are leaders within the community at home, school, and church.
Maddie’s Parents Maddie’s family is quite involved at their church. Maddie’s mother used to work in the children’s department at church, and Maddie’s father is considered an Elder. Through her church Maddie has had the opportunity to participate in summer camp. Maddie’s father is an engineer. Maddie’s mother devotes her days to juggling 3 teenage daughters as well as maintaining a household and working with Maddie on self-care. Maddie’s mother used to be an occupational therapist.
Maddie’s Parents as Advocates Maddie’s parents did their research. They put Maddie in the Indiana First Steps Program (which is a program for families with children who are at risk for developmental disorders). Maddie remained in this program until she was 3 years old. At this time they had realized that Maddie was not using her vision. She was then enrolled in the Indiana School for the Blind for the next 3 years. At the end of those 3 years, they realized Maddie was finally using her vision when she stole the food she wanted off of the plates of other children. Maddie was then enrolled into the first grade in the local public school district.
Maddie’s Care One of Maddie’s favorite forms of therapy is music therapy. She receives her music therapy in Fishers, IN once a week when available. Maddie is granted 14 hours a month of respite care. These 14 hours are dedicated to music therapy, going out to dinner, and going shopping. These activities are all developed to help Maddie become more independent. Maddie has, or is currently receiving occupational therapy, speech therapy, music therapy, sound therapy, and vision therapy.
Maddie’s Interests Maddie’s interests are in no way, shape, or form limited. Maddie loves participating in just about anything. Maddie loves the family dog, Bear. Maddie loves summertime because she goes on bike rides, hiking, fishing, hosts pool parties in her backyard, and loves to ride ATVs when she visits family. Maddie also likes to going to the movies, seeing plays, attending musicals and concerts, dining out, going shopping, going on walks, and church. Maddie had the experience of going to Disney World with her family and absolutely loved it!
Maddie’s Academic Interests Maddie absolutely LOVES science because she learns best by hands on experience and loves to do experiments. Maddie also loves computers. She is able to operate a computer at a Preschool/Kindergarten level. Maddie often does reading exercises and activities on the computer. Maddie has poor fine motor skills, but is able to and enjoys spelling things on the keyboard. Maddie also uses the computer to do matching activities as well as practice social situations. Computers are often offered as an incentive for Maddie.
A Rough Day A rough day for Maddie doesn’t happen very often, however like any other human being, Maddie has her up and downs. Maddie’s brain is constantly struggling for a sense of order. It is almost like she has Obsessive Compulsive Disorder at times. This component of Maddie is often more apparent on a rough day. Maddie will constantly ask you to recite the daily schedule for her. When Maddie’s rough days really escalate, Maddie will throw things, yell, scream, cry, and occasionally become belligerent. Maddie’s parents often try to find what causes a “rough day”. Sometimes it is because Maddie’s Mom isn’t available to her enough. Other times it is because she’s a teenager, and there are times when it is entirely out of Maddie’s control.
A Future For Maddie Maddie’s mother believes that the biggest issue they have been and are trying to address right now in Maddie’s life is Self-Care. Maddie’s mother wants Maddie to have a sense of pride and independence. It would be one less thing that Maddie would need to rely on others for and it would give her more freedom in her life and in the community. Another reason why Maddie’s mother finds Self-Care to be so important is that as a mother, she wouldn’t have to worry about a stranger harming her daughter. Maddie’s mother would also have the peace of mind that Maddie wouldn’t be put into an abusive situation. Maddie’s mother currently does 98% of the care for Maddie. Maddie’s older sisters Allison and Katy fill in when their mother is unavailable.
What is holding Maddie back? Maddie’s main limitation with Self-Care is her mental capacity. The part of Maddie’s brain that does not function properly is the part that manages her thoughts. For example, when Maddie is told her schedule for the day, she will repeat it aloud over and over again until she has a grasp on it. This is also a part of the cause of Maddie’s poor motor skills. Because of all of this, Maddie is unable to learn as a typical child would. Rather than learning in a step-by-step manner, Maddie benefits best from learning globally.
What is being done to help? Maddie has a very helpful IEP at school. Self-care is listed both as a short-term and long-term goal. At school Maddie meets with an occupation therapist. Maddie thrives in consistent and structured settings. Maddie receives 14 hours of respite care each month. These 14 hours are used to teach Maddie how to act and complete tasks such as purchasing an item at the store. All of this is done to help make Maddie a more independent child.
How do we teach MaddieSelf-Care? One of the most crucial elements of teaching Maddie Self-Care is patience. Although it is easier and faster to just do things for Maddie, it is important to foster her learning so that she can one day take care of herself. Maddie’s mother works with her as much as possible on self-care. An example would be helping Maddie learn how to put on and zip up her own coat. Maddie’s mother will help her put each arm in the coat. Teaching her that you put one arm in one sleeve at a time. She will then place her hand over Maddie’s and take her through the motion of zipping up the coat. Another way to help teach Maddie Self-Care is to plan ahead. Planning ahead means that there will be extra time to help walk Maddie through things that are done for her everyday. Also, planning ahead means that the family is able to begin preparing Maddie ahead of time for what is about to take place.
Lessons Learned Compassion: I learned how much Maddie’s family really cares about being a major part in Maddie’s education as well as her development. Patience: I learned how patient a family has to be to best help a child with special needs. Life: Maddie’s mother shared with me that Maddie has been the greatest life coach a person could have. She taught her family how to live, laugh, love, and appreciate the little things in life. This lesson touched my heart when it was shared with me by Maddie’s mother.
Lessons Taught One of the lessons I feel that I taught Maddie’s mother (the family member with whom I spoke most) is that educators really do care, and that they want to help families as much as possible by showing a genuine interest in the development of her daughter and her education. I also taught Maddie’s mother the variety of elements and lessons that go into learning how to interact and best help families of children with special needs.
Connections to the Text The chapter that really stuck out to me the most was Chapter 4, Working with Families: Understanding Family Factors. I learned about the Family Systems Approach. This family system focuses on the family as individuals, but more so as one main family unit. Chapter 9, Working with Families: Ethical and Confidential Considerations, was also very useful. Although I understood that this article is specifically referring to educators, I saw a Code of Ethics in regards to disciplining Maddie. For example, when Maddie acts out like a typical 13 year old, she is punished as such. Maddie is disciplined by taking away her computer time or of the feasts that she planned ***Feasts are when Maddie’s mother helps Maddie pick out the foods she wants to eat and then takes them into the Dining Room table to have as a family.
Connections to the Text cont. Chapter 11, Working with Families: Understanding Transitioning and the Transition Process, is another great chapter that I can apply to what I have learned from Maddie’s family. Typical challenges that might occur during a transition is the lack of parental understanding of new systems, lack of awareness, lack of communication between the family and school, and the lack of continuity between services. Maddie’s family and especially her parents are involved in her education. I think that the biggest issues they might face during transitions would be the lack of continuity between services. Otherwise, her parents have a great awareness for her education and communicate well with Maddie’s school and therapists. The lack of continuity is something that Maddie’s family can help prevent from becoming and issue, but it isn’t always something they will have control over.
Conclusion I learned a great deal from this experience and had the opportunity to meet an incredible and inspirational family. I also particularly enjoyed this project because I am currently not in a school teaching, and it was nice to interact and learn through real life application, develop useful tools for my future as a teacher, as well as a Special Education Teacher. I think the components that I felt to be most crucial to my development as a teacher were the elements of patience and compassion. Children with special needs require special attention, their parents require special consideration and extensive planning and research into local and helpful resources.