Running Head: FAMILY INTERVIEW ASSIGNMENT

Family Interview Assignment

Katelyn M. Smith
Indiana University Purdue University Indianapolis

FAMILY INTERVIEW ASSIGNMENT

If my sons disability is getting worse, and nobody notices, then who will catch
it? stated Arin Sparger as she expressed her concerns for her child, Will (personal
communication, November 18, 2015). Will is a fourth grade student attending the Avon
school district in Indiana. At his school, he has an IEP and periodically takes part in
activities in the Resource Room; however, he is in a general education classroom for the
majority of the day. Arin stated that he is right on target with development and his grades
are fantastic. Will is a bright, smiley, bubbly boy and a caring brother to his two-year-old
sister with Down syndrome. Will stated that he is a very active boy scout and a member
of the jump-rope team at his school. As a family, they enjoy kayaking, hiking, and
camping. Learning this about Will related back to the Bilken (2000) article when the
speaker stated that a character with a disability in the media is portrayed as a retarded
personhaving only the most rudimentary reading abilities, is asexual, lumbers around
in a gangling, uncoordinated way, and is the brunt of practical jokes (p. 339). Many
people with disabilities are very active and enjoy a healthy, happy lifestyle. The image
that people generally have of people with disabilities comes from the media or
individuals that are uninformed about the reality of people with disabilities. My
conversation with Will and his mother, Arin, really exhibited how disabilities do not at all
limit an individual and can encourage a closer relationship among family members.
While speaking with Will and his mother, I learned that Will has Tourette
syndrome. Arin explained that Tourette syndrome is when a person has different tics
either physical or vocal. It is an inherited neurological disorder. For example, Wills tics
are that his eyes will blink rapidly, and he will clear his throat uncontrollably. He does
not, however, have any verbal tics. Will stated that his peers sometimes do not

FAMILY INTERVIEW ASSIGNMENT

understand his disability or will say things that make him feel sad. Arin then told me that
Will tries to keep his tics from happening because it has become a social issue. We
encourage him to wear sunglasses or suck on a cough drop if he feels that he needs to
clear his throat. We try to come up with socially appropriate ways for him to become less
concerned about what people are going to say. When he tries to keep his tics from
happening though, his muscles will get sore and painful (personal communication,
November 18, 2015). This related back to the Mooney article (2008) when the speaker
stated, I had tried to act like all the people I wasnt like, trying to be normal (p. 7).
Wills mother made it very clear during the interview that Will sometimes struggles with
fitting in and feeling normal, and this connection was very clear in the Mooney article as
well. It saddens me that children with disabilities feel strange or as if they need to
somehow hide their disability to be accepted by others, as this should not be the case.
Arin also stated that Tourette syndrome can also lead to other health problems. For
example, Will also has ADHD, and he is medicated for both ADHD and Tourette
syndrome. Arin stated that it is difficult because you must try to keep a balance between
keeping those behaviors in check and not medicating their personality (personal
communication, November 18, 2015).
Arin noticed her sons tics and knew that he had Tourette syndrome after
researching more about the symptoms that she saw in her child. She spoke to his doctor
about what she noticed. The doctor told her that they wanted to see those symptoms for
one to two years before diagnosing him. Arins family then moved to a new school
system in Avon. She sat down with his new teacher and principal and discussed what she
noticed. She told them that she would like to start a 504 plan for Will, and the school was

FAMILY INTERVIEW ASSIGNMENT

very reluctant at first because there was no official diagnosis. She later found out from
her ex-husband that his cousin was diagnosed with Tourette syndrome. Arin took this
information to Wills doctor, and Will was finally diagnosed. At this point, Wills formal
diagnosis made him eligible for an official Individualized Education Plan. The principal
of the school apologized for being reluctant and stated that she did not know anything
about Tourette syndrome. I felt like the Zhang and Bennett article (2003) illustrated
Arins feelings very well during this tough time. The speaker in the article stated, When
a child is suspected of having a disability or referred to an agency for a disability, an
emotional period begins for the family It is very important for professionals to
understand familys emotional reactions to disability (p. 53). Arin definitely felt sad and
frustrated when she discovered that her child had needs that were not being met. She also
felt that the doctors and school faculty were ignoring her or having trouble understanding
the needs of her son. She really had to fight to help her son get a diagnosis, and it is
disappointing that it was so difficult for Will to get the help that he needed.
After addressing this issue, Arin talked about how the school has still done many
great things for Will. They have helped his grades to improve tremendously, as well as
give him empowerment and confidence. She stated that Will could go to the Resource
Room during school if he needed help or a break. Arin said, Will has a tough time
advocating for himself, and he needed to learn how to ask for help or ask for a break
(personal communication, November 18, 2015). So the school actually set a break time
for Will, and he has learned that it is okay to get up out of his seat to get a drink of water
or even just walk down the hallway in order to decompress and get rid of his frustration.
He now feels comfortable with saying that he needs a break or some time away from

FAMILY INTERVIEW ASSIGNMENT

class. Arin stated, they [the resource teachers] were great at teaching him how to
recognize signs within himself when he was not ready to acknowledge that he needed it
(personal communication, November 18, 2015). Will actually stated that he has made the
honor roll at his school. He also has a close relationship with his second grade teacher
who still tutors him in some subjects over the summer. Arin and Will stated that this
teacher made a huge impact in their lives, and Will explained that he has learned a lot
from him.
After meeting Arin and Will, I noticed that they were a very loving and supportive
family. They all took care of one another and were not afraid to share their successes and
struggles when it came to having a disability. Arin stated that the ultimate goal for Will
was to receive his high school diploma and go on to college. She also stated that he does
not need accommodations and is able to keep up with the other students in his class. Will
actually told me that he loves recess and lunch at school, but that his favorite subject is
actually science. He enjoys doing experiments and always has lots to talk about when it
comes to science. Arin stated that he really needs hands-on activities to get engaged and
excited about what he is learning in school. He loves movement and using his hands, and
she told me that being able to do experiments in science gives him that movement that he
needs to stay engaged.
In addition, Arin stated that he is an amazing, caring big brother to his sister. He
is extremely funny, although his jokes are not always appropriate, laughed Arin. He is a
joy to be around and is very energetic. Arin went on to tell me that Will is extremely
kind, he has a great heart, and he is an amazing friend. He knows when to say no and
makes very smart decisions (personal communication, November 18, 2015). She

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discussed how his sister has many health problems associated with Down syndrome and
that she has had many surgeries. Will is always right there beside her to cheer her up and
help his mother take her to her doctors appointments. This related back to the Smith et.
Al (2005) article where the speaker stated the education of children is enhanced with
family involvement and support (p. 136). Not only is education enhanced, however, but
also other areas of their lives. Wills younger sister is able to have an understanding
friend who can be there for her and support her through anything she is going through.
Will is able to learn about another disability and how to be caring and responsible while
caring for his sister. Arin and her husband can become more understanding of people
with disabilities and can have a more loving, close family because of that. There are so
many benefits that can be reaped in special education and in the lives of people with
disabilities when a family is supportive and involved. Arin smiled and stated that Will
will be a great advocate for his sister, and I take pride in that (personal communication,
November 18, 2015).
Finally, Arin wanted to add that she feels it is critical for all people involved in the
childs education to be familiar with their disability and to be trained in working with
them effectively. She worries for her son because Tourette syndrome can actually worsen
with age. She would like for the school faculty to know more about her childs disability
and to be able to recognize signs that it is worsening or that he needs more medical
attention. Arin said, they need to be familiar with what it is and what it can be. They
spend eight hours a day with my child, and we should be educating faculty with signs of
what to look for (personal communication, November 18, 2015).

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I definitely enjoyed interviewing Arin and Will, as well as learning more about
Tourette syndrome. I knew very little about Tourette syndrome, so I was thrilled to be
able to learn more about it from someone who could speak from personal experience. I
also enjoyed seeing how the family interacts with one another. They are a very loving
family that is very passionate about enjoying life, and they refuse to allow anything to get
in the way of that. Arins two children evidently do not allow their disabilities to get in
the way of their life and possibilities. I loved seeing how passionate Arin was about the
topic of special education. Though she did get what she wanted for Will after doing lots
of research and advocating, she certainly illustrated the struggle of getting the diagnosis,
getting an IEP, and helping her child get the education that he needs. They are huge
advocates for one another, and they definitely look towards the future. I also noticed that
they were a close family, and I believe that this was because of their experiences with
disability. They all understood one another, and the childrens disabilities brought them
closer together as a family and allowed them to connect on a different level. Their level
of support for one another touched me, and I was definitely inspired by their family. I
also was able to do a little investigating to figure out what the Sparger family and other
families of children with disabilities would like to see in education. I was thrilled when
Arin stated there was room for improvement and that she is worried the faculty will not
recognize signs of her childs disability getting worse. This provides information for how
educators can improve the future of special education, and I really took this to heart. I
agree that special educators and educators in general need to be informed about different
disabilities in order to know what to look for. This will ultimately provide the best for
each child and could prevent future complications from arising. We need to take the time

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to listen to the families and figure out what they need or would like to see in their childs
education. By including families as much as possible, we can successfully educate all
children and eliminate anxiety or frustration between families and school professionals.

FAMILY INTERVIEW ASSIGNMENT

References:
Biklen, D. (2000). Constructing inclusion: Lessons from critical, disability narratives.
International Journal of Inclusive Education, 4, 337-353.

Smith, T. E. C., Gartin, B. C., Murdick, N. L., & Hilton, A. (2005). Families and
Children with Special Needs. Upper Saddle River, NJ: Pearson.

Mooney, J. (2008). The short bus: A journey beyond normal. New York: Macmillan.
[Read Prologue. The short bus story. pp. 1-12]

Zhang, C., & Bennett (2003). Facilitating the meaningful participation of culturally and
linguistically diverse families in the IFSP and IEP process. Focus on Autism and
Other Developmental Disabilities, 18(1), 51 59.