Kendall, now 11 years old, was diagnosed at the age of 2 with Autism Spectrum Disorder at the moderate level. Kendall is a special education student at an elementary school and receives accommodations. Kendall cannot speak so she uses sign language to speak. Kendall lives in a middle class home with both parents and two siblings, Jackson-age 9 and Jordan-age 13. Kendall’s mother is a Respiratory Therapist in a private practice and her father is the Assistant Principal at an elementary school. Kendall is the first known diagnosed family member with Autism. Name of person you are interviewing: Dondrea Geter Name of individual with the disability: Kendall Geter Describe the disability: “Kendall’s pediatrician told us that Autism is a developmental delay disorder that affects the brain and that’s why she didn’t make eye contact with us when we called her name” (D. Geter, personal communication, November 30, 2018). Age of the individual with the disability: Kendall was diagnosed right before she turned 2, and now she is 11 years old” (D. Geter, personal communication, November 30, 2018). Describe the relationship between family members and the individual with the disability: “It’s very hard for my extended family to communicate with Kendall because they don’t understand her condition, so they tend to talk at her, sometimes. My wife and myself and her siblings have learned sign language so that we can communicate with her. At least we can half way understand what she wants or needs” (D. Geter, personal communication, November 30, 2018).
How did you learn that Kendall has a disability? (Who was present? When did this happen?) If you were giving advice to professionals who need to explain to a parent that his/her child has a special need, what would that advice be? “My wife and I both noticed that when we would call Kendall’s name, she would not respond at all; it was as if she didn’t hear us and. We also noticed this when she was about 10 or 11 months. We just thought that she was busy watching television. She would stare at an object for a long time and when we would try to play with her, she would become easily agitated. We continued to watch her and more symptoms started to appear. So we decided to take her to the doctor to have her hearing tested. We thought maybe the reason she didn’t respond to us was because she couldn’t hear us. So we told the doctor about how she was acting and he suggested running other tests. He diagnosed her with Autism at 20 months, right before she turned 2. My advice to professionals would be to have compassion and patience with the parents and already have a game plan or suggestions about how to deal with a child who has Autism.
Many people don’t know and/or understand this disorder. My wife and I were not prepared to hear that our child has not only a disability but also Autism. I also think that professionals should have resource available to give to parents about what the first step is after diagnosis. I, myself, know about Autism from an Educators standpoint but now I understand and can relate to the families of my students with disabilities. I now have a different perspective” (D. Geter, personal communication, November 30, 2018).
How did you feel when you received the diagnosis? “I was relieved and overwhelmed at the same time. I was glad that we finally knew what was going on with Kendall and that she wasn’t deaf but wasn’t ready to hear that our child has Autism. After the shock of the news, I began to research and find resources in our area that we could turn to. I also begin researching a specialist that we could take her to, to be evaluated so that we could start early prevention. We wanted to make sure that she would have every opportunity at a normal childhood and educational opportunity available. We wanted to make sure that we would be able to communicate with her and that she could understand us” (D. Geter, personal communication, November 30, 2018).
Have your feelings changed since the initial diagnosis? Describe. “Yes, I think that my feelings have changed slightly. I don’t feel as overwhelmed now. Since we are able to communicate Kendall and we have strategies in place at school to ensure that she receives a quality education as well as special education services, I know that we are doing all we can for her. Each year at her annual IEP meeting, there’s progress, so I know that she is progressing” (D Geter, personal communication, November 30, 2018). What have been the positive aspects of having a child in the family with a disability? “Well, I think that Kendall’s condition has made us be more patient with each other, come together as a family, and has made me more humble. We, as a family, chip in to help Kendall with things she’s not able to do on her own. Our children interact with her more and they try to keep her in good spirits. We spend a lot of time in our family room talking, watching movies, and playing games. I think that is extremely important that we are a positive family unit and we stick together no matter what. As a parent with a child with disabilities, it can get stressful but with God, we can withstand any storm that comes our way” (D. Geter, personal communication, November 30, 2018).
What have been the problems or challenges you have experienced having a child with a disability? “When Kendall was younger, having to try and teach her sign language and communicate with us was very challenging. We actually had to seek an ASL translator to teach us how to sign. I know that it was extremely difficult for Kendall. But now she does attempt to speak a few words to us. Also, teaching her to potty train was exhausting because she could not understand what we wanted her to do and she was confused on when to go. Kendall was fully potty trained when she turned 7. Also, getting her to sit still to eat was a challenge. She would eat but it was hard to get her to sit still long enough to do so. I think the biggest challenge was incorporating a routine when she started school. I think that each challenge was difficult but with time and patience, we were able to overcome the obstacle. I know that as she gets older, there will be more hurdles to jump so I pray for guidance. Once Kendall gets use to a routine, she does ok” (D. Geter, personal communication, November 30, 2018). How did your other children react to learning their sister had a disability? What impact has Kendall had on them? “At first, I think that Jordan was a little confused, but she was really young when Kendall was diagnosed. Jordan wanted to play with Kendall but Kendall did not want to be touched and didn’t respond when Jordan would speak to her. My wife and I explained to Jordan (when she was older to understand) that Kendall couldn’t talk to her. I think it was a little hard in the beginning for the both of them.
When we had Jackson, we taught him sign language as he got older to understand and he had adapted to Kendall. Both, Jordan and Jackson, help out a lot and enjoy spending time with their sister. I think that Kendall’s condition has taught them that everyone is uniquely made and that we should treat each other’s, as we would want others to treat them. I also think that it has taught them patience, compassion towards others, and to always be kind to others” (D. Geter, personal communication, November 30, 2018). What kinds of support have been most helpful to you (family members, parent groups, neighbors, other)? How would you prioritize your family needs and the areas in which you feel you need more assistance? “Our family and friends have really been supportive. They have provided additional resources for us. They’ve provided prayers for understanding, and a shoulder to lean on, in case we needed. We have met with other parents of children with Autism Spectrum Disorder at meeting. So, overall, we have all the support we need. I don’t think that we need more assistance right now but of course my family always come first. I think that we prioritize the way we spend time with our children. We ensure that everyone eats together and that we have family fun nights. This way we can spend time with each other because of our busy schedules” (D. Geter, personal communication, November 30, 2018).
What have been your experiences in working with school personnel? What have they done that has been most helpful? What have they done that was least helpful or even harmful? “Overall, the school personnel at Kendall’s school have been great. They send home daily reports about her behavior or anything that I may need to know about. I really like that they do this because it keeps me in the loop of what’s going on in the classroom. It also shows me that she is getting one on one time. They also keep me in the loop, via email, about classroom activities. I really have a sense that she’s receiving great care. I really can’t complain about Kendall’s school. I’m satisfied with her teachers as well as the administration. One thing comes to mind that they could do, they could include more computer time. Kendall really loves the computer” (D. Geter, personal communication, November 30, 2018). How could the school help your child transition to adulthood? “At this point, since she is so young, I think that there’s nothing that the school could teach her to transition into adulthood other than maybe how to shop for food. I think that Kendall will not be able to live independently. But being able to take her to the grocery store and have her help deciding what foods she want would be great” (D. Geter, personal communication, November 30, 2018).
If I were to be Kendall’s teacher next year, what advice would you want to give me so that she has an optimal learning experience? “I would tell you to have patience with Kendall. I would also tell you to develop a strategy in order to gain her interest in the lessons that you teach. You would also need to make her feel safe in the classroom and consistency is key. Kendall likes routine. We have a routine at home on how things are done everyday and on the weekend and if we alter it slightly, it sets off her behavior that turns into tantrums. Kendall is a sweet and loving child but she has to have structure. Kendall also loves the computer, so you may want to incorporate a few lessons via technology. Also, communication is key for her mom and I. We like to be informed about what’s going on with Kendall, whether it’s daily or weekly. We like to stay in the loop and occasionally we will come and visit” (D. Geter, personal communication, November 30, 2018). What would you want me to do/not in terms of my interactions with you if I were Kendall’s teacher? “Just communicate with us about Kendall’s progress.
We want to make sure that she is learning and enjoys school. But we do want to make sure that she is benefiting from the services she’s receiving. Just keep us in the know! “ (D. Geter, personal communication, November 30, 2018) I am just learning about students with disabilities and how to work effectively with them in my classroom. What other information would you like me—and my classmates—to know about working with children with special needs? “Always treat these kids like they were your own. Have patience with them, guide them, and treat them with respect. Find a way to be able to relate to them so that they feel safe and that the classroom room is a safe haven. Create a bond with them so that they can be confortable in the classroom environment. Also, have compassion and treat them with kindness. It takes a strong individual to deal with special needs children. I think that you should also incorporate small group, one on one time, and interactive activities in your lesson. I know that Kendall enjoys interactive hands on activities” (D. Geter, personal communication, November 30, 2018).
Receiving a diagnosis of an Autism Spectrum Disorder (ASD) has a major impact on an individual and his or her family (Crane). Early prevention and identification of children with Autism is extremely important and a key element of treatment (Kirk, pg. 147). Early prevention allows children with Autism Spectrum Disorder to make significant gains and affords an early opportunity to begin therapy in language functioning and improvement in peer relationships (Kirk, pg. 147). There are several strategies that I would recommend that will be effective in improving social skills, behavior, and communication. Augmentative and Alternative communication (AAC) and assisted technology, not only improves speech, but provides ways to communicate the needs of the child and can prevent the development of non adaptive child behavior (Kirk, pg. 156). Extensive use allows the child with disabilities an opportunity to view pictures displayed on a communication board. By pointing at pictures, students with autism are able to communicate his or her wishes (Kirk, pg. 156). The improvement of communication devices has a favorable effect on controlling or reducing challenging behavior because disruptive behavior is sometimes caused by not being able to communicate their needs and wishes (Kirk, pg. 60). There’s also software being developed to help teach social skills. Another educational strategy I would recommend, which is a way to cope with behavior manifestations of autism, is known as functional behavior assessment (Kirk).
Functional behavior assessments do not focus on the behavior of the child but focuses on the meaning behind the behavior. Functional behavior assessment is also known as the ABC approach (Kirk). The A (Antecedents) stands for what preceded the behavior, B (Behavior) stands for the nature of the event, and C (Consequence) stands for what happens as a result of the behavior (Kirk). This strategy assesses the behavior, what the child will benefit from the behavior, and whether it is a form of communication. Once the team understands the reason behind the behavior, positive strategies are developed to teach the child positive alternative for attaining his goal. Every student with a disability will have an Individualized Educational Plan. A team of educators, specialists, administrators, and the parents will design an education plan to ensure that the child will receive services, accommodations, and modifications needed to be successful in the classroom as well in society after high school. I think that it is extremely important for students with disabilities to remain in the general education classroom also known as “Inclusion”. Academic lessons are designed for the child with autism and lessons can be short and not complex to ensure progress and success in appropriate tasks. I also think that students with autism would benefit from small group work.
The IEP would also include special plan for improving social skills and language development as well as specific strategies to cope with behavior. Creating structure is another successful strategy. The desire for structure among children with disabilities can be met by visual representations (Kirk, pg. 157). Creating a consistent physical environment and daily schedule ensures security. Consistency is key for academic successful for students with disabilities. Part 4: Conclusion—Reflection and Discussion Interviewing Dondrea and listening to him talk about Kendall with so much regard to doing what is best for her and making sure that she is able to communicate and receive an appropriate education by receiving the necessary accommodations was touching. As a parent, we want to be able to provide the best for our children. We also want to make sure that they have everything they need to be successful. So, it was difficult to hear him talk about how hopeless he felt at times; he wishes that he could do more to help Kendall. He told me that his doctor were glad that they noticed the signs and that they followed up with their doctor.
Early prevention and identification allowed them to get a head start on learning how to communicate with their daughter and understand her needs and have her communicate with them. As a parent of a child with Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD) it was extremely difficult to me to come to terms that my child needs additional help to be successful in the classroom. I also thought that I was the blame of why my child had developed both disorders. I felt overwhelmed with all of the information and acronyms that were being thrown at me during the 504 meeting. I had little knowledge about either disorders so I felt vulnerable, confused, and stressed. After talking with my child’s pediatrician and other supportive resources, I was able to educate my husband and other children about my son’s condition. I felt comfortable at the next 504 meeting because I was prepared. I think that it was wonderful that Kendall’s condition was caught early. Early prevention and identification is crucial. As an administrator, I have participated in many Individualized Educational Plan meeting to develop, write, and implement academic goals and accommodations and/or modifications for the child with disabilities. I have witnessed frustration from parents and teachers and parents in denial that their child needs special accommodations to be academically successful in the classroom.
When I encounter parents, I do suggest that they become familiar with their child’s condition and understand that the IEP is to only help the child progress in the classroom, socially and academically. I do suggest that they ask questions and make suggestions pertaining to the annual goals that are being written. I also stress to them how important their involvement is. This interview made me realize that parents of children with disabilities have a special connection or bond with each other. We all have felt some type of guilt about the conditions that develop beyond our power. We are all uniquely made and have a special purpose in this world. We all have difficult storms and seasons that we go through, but in the end, we come out victorious and possess a testimony to share to empower, inspire, and uplift others who may going through the same thing. 2 Corinthians 12:9-10 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness”. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. This verse is truly uplifting when we are overwhelmed with making sure we are making the right decisions for our children. We must be their voice.
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