Abstract
This essay covers the questions regarding accepting and raising a special needs child, such as adjustments, accommodations, challenges and strengths that parents of a child with special needs might have to deal with. During the course of writing this paper and the previously conducted interview with parents of one such child, I have gained an immense amount of experience, the results of which can be found in the following essay.
Parents with special needs children are like on a journey that takes them into a life, often filled with powerful emotions, difficult choices, interaction with professionals and specialists, and an ongoing need for information and services (Parenting, 2003, p.15). Also, they may feel alone and isolated when others do not always understand their unfair struggle, which leads to a state of confusion and challenges, has numerous physical demands and perhaps, most importantly, special expenses that other parents are not subject to. For the purpose of understanding the experience of having a child with special needs, I obtained the following information by interviewing parents of a child named Jake, who is 9 years and 6 month old and diagnosed with autism.
After thirty- six weeks of pregnancy, Jake was born in Tampa, Florida, with the umbilical cord wrapped around his neck, stomach, and his leg. His Apgar score was 9.9 out of 10, despite the fact that he was a small, premature baby. His weight at birth was two pounds and fifteen ounces. Afterwards, he lost a lot of weight, and he did not gain it back until he was three months old, although his eating was normal. This was the first sign for his parents, but they did not check with the doctor and thought all of this was normal, because after all, their baby was premature. However, Jake grew up as typical children of his age did. For instance, when he was thirteen months old, he started walking, and also started babbling words like mama and dada.
When Jake was twenty months old his family moved to Colorado. At that time, several changes in the family took place. For example, the family moved to a new house, Jake attended a childcare program and both of his parents started a new job. By that time, his parents began to notice that Jake stopped babbling or even making sounds. Additionally, his care provider at the childcare center reported that he cried excessively during the day and never smiled. Still, this did not make his parents worry too much about it. However, when Jake was two years old, his care provider had a private talk with his mother, about his performance and she suggested that they should go to the child hospital in order to check the child’s development unit. The mother suggested observing their child at home, which would be easier due to the amount of work both parents had, and then, tried to obtain some information based on what they were observing in their child through the Internet.
According to the examination, they became concerned about several different things, such as flapping his arms and walking in uncoordinated and tip-toe gaits, but they were mostly concerned about his speech delay. Therefore, they contacted Child Find and scheduled an audiology evaluation. His evaluation demonstrated that he had developmental delays. The mother and father were initially shocked and not responsive. They felt very distressed. His mother stated that she did notice that Jake made these flapping movements, but she thought that his flapping was a fun activity for him and that it was a normal part of a child’s development. However, Jake was diagnosed with autism in November 2005, and his parents had great difficulty hearing the final diagnosis.
Jake was now two years and nine months old. He was still not talking, not looking at others or making eye contact, exhibiting extreme reaction for transition periods, and was not rigid in routines. Part C Services intervened during that time. An early intervention provider worked with him for one hour every other week. When Jake was three years old, his parents started searching for childcare centers offering autism service. His mother tried to find a childcare center, but all of the centers that she contacted refused to accept him and justified their decision by saying that they were not equipped and did not have special education staff. Finally, she contacted Child Development Center at CCD (Aurora campus), and they welcomed them with open arms, more than willing to work with the child.
After three months, the Child Development Center had a parents’ conference, which both of the parents attended. Certainly, they both had to hear the same information about their son’s first year’s experiences. At the conference, they met a couple who had developed a program called Son-Rise for their son. They were utterly unwilling to accept the heart-breaking fact that their son had autism. Conversely, after attending the conference, they seemed more accepting of the fact and they began talking with their friends about Jake’s diagnosis.
The family went to Massachusetts to get a one-week training in the Son-Rise program. It is an intensive home program with strict parent direction for children to grasp skills. It encompasses overseeing the children, joining them, and tending to them in whatever they are doing. When the child shows an interest, parents need to focus on it and capitalize it. Parents should be in possession of materials such as toys, books, etc. available, so when the child points to an object of any sort, it provides an opportunity for vocabulary building and conversation. Consequently, the parents pulled Jake out of school. After the program was done, they implemented that program for five to seven hours per day in a therapeutic playroom in their basement. Due to his mother finishing her work early, she was able to work with him during the week and his father took over on Saturdays and Sundays. The following year, Jake got potty trained and became more interactive. He was vocalizing more, not accurate sounds, but he would say “ba- ba-ba.” When he was four years old, he went back to preschool. By that time, he was able to have more eye contact, much more interaction, and more communication. He went to a typical classroom for half an hour every day. Additionally, when Jake was in kindergarten, he vocalized one or two words with clearer intonation. Then, he went to first and second grade, where most classes had ILC (Independent Learning Center). His mother reported that their son was very successful in second grade, because his teacher was so fantastic. By that time, Jake’s brain was capable of recalling certain pieces of information. Also, he was capable of organizing this information in his brain and restating it, and if there were multiple choices, he did that easily. Currently, Jake is in 3red grade where he has more ILC and fewer inclusive classes.
On talking about strengths, challenges and concerns, his parents reported that communication has been the biggest challenge, because they do not know what he needs. Emotionally, he gets nervous and agitated easily, and his mood changes very quickly. Additionally, the relationship between Jake and his younger sister is not strong enough, because Jake’s sister is always feeling neglected and jealous, as she notices that her parents appear to be showing more concern and love for Jake than for her, despite the fact that they explained to her that her brother has autism and thus, requires more attention. Financially, they faced some challenges, since they used up their savings for therapies. Furthermore, as his parents reported, when comparing him to other typical children, it is challenging to acknowledge how different he is. Things that are easy for other children are hard for him. His parents have current concerns for Jake, such as whether it will be possible for him to participate in typical school classes as much as possible, despite his sometimes challenging behavior, and eventually attend college and hold a job. Developing friendships certainly is a concern. His mother wants him to have friends. He is very loving, but it is hard for him to interact with others, even when he likes them.
I really took great pleasure in talking to Jake’s parents and sharing their experience, and I feel that I truly obtained much information that was unknown to me before, despite knowing the family. During my interview, I asked one question after another to attempt using different sets of questions (e.g., close questions, descriptive questions, open questions, etc) in order to obtain as much information as possible. Concurrently, I avoided using ‘why’ questions for the purpose of conveying a nonjudgmental attitude. Also, this interview provided me with a great opportunity to learn how parents deal with a special needs child. I learned about adjustments, accommodations, challenges and strengths that parents of a child with special needs might have to deal with. Also, this opportunity gave me a chance to practice some strategies in interviewing, such as how to begin the interview, what questions should be asked or should not, how to direct the interview in a way that assists in obtaining the information needed, how to be an effective listener and know when to stop or communicate with the interviewee whether verbally or non-verbally, and finally, how to end the interview. It was certainly an experience which broadened my horizons beyond my wildest beliefs.
Reference:
Alone, N., & McGill, P. (n.d.). “Parenting a Child with Special Needs.” Retrieved from
