Running head: Interview Project 1

An Interview Project: A Detailed Examination

of One Parent’s Journey Through Special
Education

Aurora Turmelle

University of Maine Farmington

Interview Project 2

As part of a project for one of my special education courses, I was tasked with

conducting an interview with an individual (i.e a teacher, student, parent, school counselor or

other related service provider, etc.) who has been involved with one aspect of special education.

Specifically, I focused on learning more about the individual experience of being a parent who

has a child in special education who is the recipient of an IEP.

Further, the objective of this project is to gain an understanding of the interviewee’s

knowledge and perspectives regarding the experiences with the particular area of supporting

diverse students (i.e. their child who has an IEP), the necessary professional/student/family

partnerships required in their child’s education, and the successes and challenges associated with

Special Education. Moreover, I undertook this project to with the intention to gain insight to

concerns and issues facing students and families as they progress through Special Education.

The person I interviewed, whom we’ll call Julia, is someone who I have known for many

years. I chose to interview Julia because she has had a son who had been enrolled in, and who

had graduated from a special education program in Central Maine in 2015. Julia’s son had been

diagnosed with Autism before he began Kindergarten after an prolonged diagnosis period which

spanned from the age of two years old to five years old. Further, I wanted to interview Julia

because of her family history with special education; Julia has two older brothers, (one with

Autism, and one with an Intellectual Disability) who began receiving related services starting in

the late 60s and early 70s, during the height of Special Education reform.

I met with Julia in a local coffee shop on the first Saturday of March. Outside it was

unusually warm, and the downtown of the city was bustling with local college students enjoying

their day off. Inside, it felt like another world- it was around noon, and very few people were

inside the coffee shop. In the back of the shop there was a man quietly playing on his guitar.
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Julia went up to the counter to get herself a tea while I situated myself at a table close to the

door. Once of Julia sat down, I began explaining the reason that I had asked to meet, and the

purpose of this project.

Findings

I was genuinely shocked about what I had learned after interviewing Julia. To begin, I

started by asking Julia a variety of questions related to her brothers’ special education related

services. Julia’s oldest brother, whom we’ll call James, lived in the state-run Pineland Center for

individuals with severe special needs and behavioral issues that, as Julia described was a home

for individuals who would not be able to “live a meaningful life.” Julia describe, James had been

living in the facility since he was eight years old well into his teen years, under the Pineland

consent decree. After James was relocated after the facility closed in 1978, Julia described that

toll that it took on her family, noting how she felt isolated from the treatment that her brother

received, and how she could feel the tensions that James’s services were taking on her family.

“It’s funny,” Julia described “even though I was the target of most of his [physical] aggression, I

felt closer to James than I did [my other brother], so I felt angry and upset- I felt like he was

being taken away from our family… I think my parents felt this way too, but they never talked

[to me] about it.” Julia also described that her parents never questioned if taking James out of the

family home and putting him into the Pineland Center was in his best interest: “I think my

parents wanted to trust the professionals, since they were the ones who were suppose to know

what was best for guys like James. And because they didn’t really have any experience [of

working with people with disabilities] before James, they assumed that the professionals know
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what was best for him, and what he needed [in order to live a ‘meaningful life.’]” Given the

stressors that Julia described in her interview and what she witnessed from her parents growing

up, I formed the impression that everything regarding James’s services was taken at face value,

and that, even though it was difficult, it was the only reality that the family knew. And, knowing

about Julia’s family’s financial history, I feel like Julia’s parents fell into the category of not

knowing what resources they had access to, and therefore did not push for better services for

James.

As I moved to questioning Julia about her other brother, whom we’ll call Eddie, I found

something that paralleled my own experience of having a sibling enrolled in special education:

Julia had a general understanding of what services Eddie may have received, but in all reality

little knowledge of what his schooling actually looked like. Julia described that growing up, she

lived in in rural Sidney, Maine and attended the James H. Bean school, while Eddie attended

Messalonskee Middle School in the neighboring town of Oakland, Maine. When I questioned her

as to why Eddie attended a different school, Julia explained that the James H. Bean School did

not have a special education program, and at the time, the Messalonskee Middle School had one

of the only special education programs in Central Maine. Because of this, I found that most of

the questions I asked her she either had a difficult time answering, or she was unable to answer at

all.

While she struggled with answering questions about Eddie’s education, Julia sometimes

struggles to answer questions about her son’s education. Specifically, when I asked her if there

was anything that surprised her as she took on the role of being the parent of a child receiving

special education. She paused for a minute, and said “nothing I can think of.” Given that she had

relatively little understanding of what her brother’s special education looked like, I thought that
Interview Project 5

is was interesting that she was not surprised by anything as she took on the role as a parent. I

then questioned her about if she, at any point, talked to her parents about what to expect as she

took on the role of a parent. Julia replied that while she and her parents did talk some about what

Julia’s son was going through in school, the conversations never extended past that- “[the

conversations] were more a spontaneous and brief visitation of [what my son was doing in

school].” Though it was a different time than when her brother was in school, I was surprised

that Julia never discussed her son’s education with her parents. Given how her parents had two

children who received very different services, I figured she would have asked many questions

about what they experienced to inform her as she took to being a parent.

While Julia never discussed anything with her parents, she apparently had an open

relationship with her son’s school and his teachers. As her son, whom we’ll call Sebastian,

was first starting Kindergarten, Julia worked with school officials to have her son receive the

support he needed. Sebastian started Kindergarten with IEP that worked on a wide array of skills.

Julia described that, while in Kindergarten, he spent his days in a general education classroom,

and received pull out Occupational Therapy, Physical Therapy, Speech and Language Services,

pull-out math services as well as support from an Ed Tech. Additionally, Julia described that

since Sebastien struggled socially with his same-aged peers, his teachers made that a focal

priority his IEP goals. I then questioned her about what Sebastian’s yearly IEP meetings looked

like, she described that they “occured a couple weeks or so after the start of school year and

basically they would see how [Sebastian] did [during the last year] and to see where he was

going… I think that they wanted a little bit of time in school to see how he was doing and what

to focus on when writing the IEP.” Further, Julia described that the Sebastian’s Kindergarten

IEP team consisted of Sebastian’s special education teacher, the school principal, the guidance
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counselor, the occupational therapist, the physical therapist, the speech and language service

provider (if they were still relevant), the school nurse, herself and Sebastian. While I was

surprised to hear that the school principal was involved and not Sebastian’s general education

teacher, I was excited to hear Sebastian was involved. When I asked Julia more about this, she

clarified that Sebastian’s became more and more involved as he became older, and that when in

high school, his special education teacher made it a priority of the to talk her students about what

they wanted included in their IEP and worked that in as she began writing it.

Though some of Julia’s answered surprised me in regards to the makeup of Sebastian’s

IEP team and his involvement, the entire time we were discussing it she continued to stress that

there was an open door relationship between the members of the IEP team, meaning that she felt

that she could reach out at any time if she had questions or concerns. Julia described that, in later

grades “[Sebastian’s special education teacher] had her priorities in all of the right places.” She

described how his special education teachers worked very hard to ensure that their students were

involved with the writing of their IEPs, that parents were keep up to date, and to establish a clear

line of direct communication between all of the individuals on the students IEP team and others

were part of the students education.

While Julia struggled to answer the questions I asked her about the kind of supports that

she received as a parent with a student in special education, she continued to emphasis that the

open-door policy employed by Sebastian’s special education teachers was a system that she

utilized constantly- from the time that he was in Kindergarten until he graduated. And because of

the open communication that was in place, Julia felt very involved with her son’s education.

Though Julia admitted that she felt that her level of involvement with her son’s education may

have been greater than other parents, she described how hard Sebastian’s special education
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teachers all worked to have her involved the entire time he was in school. Further, she described

that she felt that while she was a unique case generally, her level of parent-involvement was very

common for parents with children in special education for the school system Sebastian was

enrolled in. Given that she thought this was the norm for her school system, I was very

impressed with the level of dedication that Sebastian’s teachers had for him, and all of the

special education students.

Discussion

I feel that communication was a major theme throughout my discussion with Julia. Given

how strongly Julia stressed how open the line of communication between her and her son’s IEP

team was, I was excited to hear that she felt that was the standard in Sebastian’s school system.

As I feel the communication is important regardless if the student is enrolled in special education

or general education, I feel that Sebastian’s school is working to do best by their students.

Further I feel that, given Julia’s history with lacking communication in regards to her brothers,

active communication with parents is vital for student success. As the Iris Center describes,

parents and teachers share the goal of wanting to help the student succeed in school. Further, the

Iris Center stressed that parents should be welcomed, included, and valued within their child’s

educational success. By prioritizing parental engagement and involvement, “teachers will

gradually establish positive relationships, a critical step to ensuring the success of students…

increased involvement of families… [allowing] teachers to keep the lines of communication

open in order to meet the needs of children.” Given how Julia’s experiences ranged of

involvement, from being confined from her brother’s educational experiences, to being an active
Interview Project 8

participant who felt valued and supported in her son’s education, communication between

teachers and families in invaluable in the family’s comfort.

Additionally, though I was very excited that Julia was an active participant in her son’s

education, her level of involvement made me reevaluate how schools and educators do not

discuss rights with parents and families. As previously described, Julia’s brother’s James was not

living at home, and was not included within the school system. Given how new and foreign the

concept of special education and support was, it was difficult for her parents to know what was

appropriate for James. Specifically, since they were putting all of their trust into the specialists

that worked with James, it seemed that Julia’s parents took James’s services at face value.

Because they lacked the knowledge and experience, I believe that Julia’s parents did not know

how to communicate with James’s specialists, as they assumed that they were doing the best they

could do. Though it is different, I feel that this situation is not unique to Julia’s parents; this same

sort of situations where parents rarely communicate with service providers can be seen in Susan

Nussbaum's novel Good Kings Bad Kings.

As the novel tells the story around teenagers living in, and adults related to the Illinois

Learning and Life Center, or ILLC, an institution for juveniles with disabilities. Called a

“nursing home for ‘crips [students with disabilities],’” by the kids living there, the teenagers in

ILLC are sent to live there by their parents after being recruited, and become isolated from the

outside world. Inside, rarely do their families come to visit, and the teenagers are at the mercy of

facilities professional caregivers. As the novel reveals, often times parents are unaware of the

living conditions of the facilities, and are not informed of the rights of their families. In both

Good Kings Bad Kings and in Julia’s family’s experience with James, parents are not aware of

their rights, and therefore do not question the decisions being made in regards to their child’s
Interview Project 9

services, or advocate for services for their child. Thus, since the issue of lacking knowledge

about services and parental ability to question and challenge service-related decisions, I feel that

educating parents should be something that educators actively work towards. While Julia states

that she felt like she was an active participant and in her son’s education, she is unique in the

masses of those involved with special education; I feel that Julia’s experiences with special

education are the kind that educators and parents alike strive for. But while she has such an

“easy” experience with her son’s education, it is important to recognize that this is not the

standard, and that special education and general education will have challenges.

Recommendations

Growing up with with a brother in the special education system, I thought that I knew a

lot more than I actually did about what his education looked like and his experience. However,

looking back now, I have found that I had reality little understanding about what my brother was

going through. Additionally, given that Julia experienced a similar sort of thing with both of her

brothers- not being in the same home and being (forcibly) separated from her brother James, and

not being in the same school system as her brother Eddie (and therefore not knowing what

services her was receiving and what they looked like), I feel that siblings of students receiving

special education services are not being taught what special education is, it’s purpose, and

therefore are not being included in the education that their sibling(s) receive. Therefore, I feel

that siblings (and more generally all students) should be included within conversations about

special education is. Having a better understanding of special education, it’s purpose, and how

they can support students receiving special education services. In addition to gaining a better
Interview Project 10

insight as to what their sibling may be going though, I feel that including siblings within the

conversation of what

Including the siblings in the student’s special education may create opportunities for

educators the to get the know the student in a holistic way, which in turn can better the supports

that they provide. Siblings, traditionally, have a history that is unlike a relationship than a parent

or an educator may have, and therefore can provide another lense to view the student. For

example, the sibling may be better tuned in to the interests and the dislikes of the student, which

educators could then use to better engage the student academically, or may allow them to find

same-aged peers for the student who shares those interests (which in turn could lead to the

development of friendships over that shared interest). By including the siblings within the

students education, as well as in writing the students IEP, this could create an atmosphere in

which the student feels that they have greater say and more influence in the writing of their IEP-

which is the inclusion model that schools should be moving towards.

Additionally, given the unconditionally support that Julia felt when working with her

son’s IEP team and when working directly with her son’s teachers, I feel educators and IEP

teams should actively work to incorporate the thoughts, ideas, and opinions of the student’s

family. Though Julia’s case does seem unique of in the sense of how involved she was with

Sebastian’s education (in comparison to others I know who have had children in special

education, as well as in comparison to Julia’s own parents), the level of involvement she had

allowed her to feel confident in the services that her son was receiving, and granted her the

opportunity to advocate for herself and for the needs of her son.

Overall, I feel that educators should work to make sure that the student’s parents have an

active role in their child’s education. Given that the parents spend the most time with their child,
Interview Project 11

and have a holistic view of their child, involving them can increase the level of trust that parents

are able to put in their child’s teachers. Further, by incorporating people into the student’s

education that have come to know them in a setting aside from school, this creates the

opportunities for get to know the student in a multi-faceted light. Meaning, by incorporating

people into the students educational plan that have an understanding of who the student is as a

person, what their interests are and where they may struggle creates opportunity for the teacher

to consult with an expert about that child (i.e the parent) and to have someone act as an

unwavering advocate for their best interests. Additionally, working to include parents from lower

socioeconomic backgrounds can better help them figure out what resources that their child has

access to, as well as provides the opportunity to educate them on what a free and appropriate

education should entail.

While schools should be moving towards an inclusion model that actively works to

integrate disabled students into the general education classroom, schools should be working to

create systems of integrating families into the special education classroom. By actively including

families, schools can work towards increasing understanding of what special education is and its

purpose. Further, schools could better educate the general education-student body as to what it

means to receive special education- which could influence how one understands special

education students learn, and in turn could create a shift from a disability-first to a person-first

understanding of special education students. Ultimately, I feel like I learned very much from

interviewing Julia, and I feel that I now am more aware of the family’s impact on special

education, as well as student’s special education’s impact on the family. As I go move forward, I

feel that I will better be able to include families, and I will work to ensure that clear and direct

communication is in place, as nothing will change should we not open it up to discussion.

Interview Project 12

Appendix A:

FAMILY HISTORY WITH SPECIAL EDUCATION

1. What was it like growing up with siblings involved in Special Educational Services?
2. Did your brothers have an IEP or a 504 (to your knowledge)? Do you know what services
did they recieve?
3. Do you feel like growing up you had a strong grasp of what special education was
suppose to look like? What do you think it is suppose to look like?
4. Do you feel like your family (brothers, parents) were supported by the special education
department? What do you think could have better supported your family as they delved
more and more into special education?
5. How would you compare the experience of your brothers to that of your sons? Where
was there overlap? Where did they differ?
6. Did anything surprise you as took on the role of a parent in your son’s Special Education
experience? What were the differences that most shocked you?
7. Did you talk to your parents while you became involved with your son’s education? If so,
what did those conversations look like (support, questions, teaching/learning about
special education, etc)?

8. What was it like when your son was first starting school- what was the kind of classroom
that he was in primarily? Did he immediately begin school with an IEP meeting? If not,
when did his teachers schedule the first IEP meeting?
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9. Did your son ever receive support from paraprofessionals (ed techs, therapists (speaking,
physical, etc)? What was their role in your son’s education?
10. Was the pull out method used with your son? If so, how do you think it influenced his
education? How did it influence his social skills?
11. Do you think that your son’s teachers worked to help him build his social skills? If so,
how do you think they supported him socially?
12. Do you feel that your son was ever denied resources to benefit him academically and
socially? If so, please describe the resources and the experience.

IEP Specific
13. What did the yearly IEP meetings look like for you, your family, and your son?
14. Who was involved in your son’s IEP process? How did this makeup change as he got
older?
15. Was the pull out method used with your son? If so, how do you think it influenced his
education? How did it influence his social skills?
16. How did your son’s IEP change and develop as he got older?
17. What did your son’s transitional goals on his IEP look like?
18. Do you feel that your son’s educational experience would have been better if he had been
included in more general education classes?

Relationships
19. How would you describe your relationship with your son’s IEP team?
20. How would you describe the support your received from the school related to your son’s
special education?
21. Do you feel like you were included in your son’s education? Can you describe it for me?
22. So often times parents from low-income backgrounds often don’t know what resources
that they [should] have access to in their child’s special education. How would you
describe your knowledge of resources when your son was in school?

MISC
23. Did your son ever feel like he wasn’t receiving the same education as his peers? How did
you describe to him the purpose of his special educational plan?
24. What was the most rewarding aspect of your son’s special education?
25. How has your son grown since he first started his special education?
26. What has been the biggest challenge of your son’s special education.
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References

Collaborating with Families. (2019). Retrieved from:

https://iris.peabody.vanderbilt.edu/module/fam/cwrap/#content

Harvey vs. Consumer Advisory Board District Court of Maine. (2010). Retrieved from
https://www.govinfo.gov/content/pkg/USCOURTS-med-2_91-cv-
00321/pdf/USCOURTS-
med-2_91-cv-00321-17.pdf

Nussbaum, S. (2013). Good Kings Bad Kings. Chapel Hill NC: Algonquin Books of Chapel Hill.