1. Term Paper: Parenting Children with Special Needs 1
Term Paper: Parenting Children With Special Needs
Andrew Thompson
Sociology 252 (99)-Marriage and Family
Bethel College

2. Term Paper: Parenting Children with Special Needs 2
Abstract
The following paper deals with the joys, wonders and issues related to parenting a child
termed "special needs." The paper will start by dealing with a brief overview of the
history of how children with physical and intellectual difficulties have been treated by
parents and societies. The second section of the paper will report current parenting
methods and controversies related to parenting special needs children. The third and
final section will address personal and anecdotal information about my experiences
raising a special needs child. One of the sources used in the third section will be Jeanne
McDermott's Baby Face, the story of a scientist raising a child with Apert Syndrome.

3. Term Paper: Parenting Children with Special Needs 3
Parenting Children with Special Needs
It would be an understatement to say that becoming a parent is never easy.
Despite the plethora of gifts showered on new parents, many of which the
prospective mother and father have no idea what to do with, raising a healthy child
takes more than hardware. What happens, however, when a couple starts this
journey with a sick or differently-abled child? After all, no expectant couple ever
starts by shopping for a book on “What to Expect When You’re Expecting a Special
Needs Child,” even if such a book is available. For parents of children with physical,
intellectual and emotional difficulties the books are often put aside in favor of
experience and patience.
The term “special needs” comprises the subject of this paper, but what
exactly does it mean? After all, “special” isn’t all that special of a word. We use it in
American society to describe marked down deli items, express train service and
newspaper feature stories. In this case, the term might fall closest the journalism
definition. These are people we are asked as a society to take notice of because of
their unique needs, as we are asked to take notice of a story that might impact daily
life. The standard dictionary refers to special needs as pertaining the educational
requirements persons with emotional or behavioral difficulties, or physical
disabilities. This definition only exists, however, because societies began looking at
individuals with these difficulties as both special and in need. The arrival at that
definition has been a long time in coming.

4. Term Paper: Parenting Children with Special Needs 4
According to Disability Studies Quarterly, the ancient Greeks and Romans
believed at the government level that individuals with disabilities were to be
removed from society. Both rich and poor were tasked with getting rid of their
disabled family members. Christianity, which was a burgeoning social force at this
time, did not hold to this view. This is why many disabled persons were taken care
of at monasteries until that system died away. The church, by the 17th century had
moved away from social care for the disabled, as well. John Calvin and Martin Luther
were among the vocal legion of Christians who considered the disabled burdened
with evil spirits. The Darwinesque concept of survival of the fittest later superseded
the demonic element as a way of marginalizing the disabled. In other words, no aid
was to be earmarked for the handicapped because natural selection would sort
them out.
The American Association of Persons with Disabilities notes that in the
nineteenth and twentieth century life of the United States, disabled individuals were
involuntarily institutionalized. Elizabeth Seaman, a journalist, posed as mentally
disabled and gained institutionalization at New York’s Blackwell Island. Her articles
from that rat infested colony as well as forced eugenics exercises going on at the
time, brought attention to the needs of the disabled. According to the AAPD’s
published web material, what changed eugenics, sterilization and
institutionalization for good was the emergence of disabled, yet productive veterans
after World War II. By the 1960’s institutionalization of children with disabilities

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gave way to community services agencies, public school mainstreaming and
legislation guaranteeing the rights of the handicapped.
With the advent of most special needs children being raised at home rather
than institutionally (as in previous generations) and public accommodations
afforded by The Americans with Disabilities Act, parents face a new array of
challenges. Jonathan Singer, in The Special Needs Parent Handbook, lists a common
problem among parents of children with disabilities in his introduction. Often, when
taking a special needs kid for medical treatment, physicians and caregivers don’t
know how to properly treat the child. They may treat the child as a person
presenting under normal circumstances, when the reality is far from normal.
(Singer, 26). The child may have airway issues, medication interaction issues, or any
number of special circumstances that have to be addressed.
Singer discusses another issue near the hearts of parents of special needs
children: relationships. Oftentimes, the needs of the child tax the parent mentally
and physically. Singer recommends maintaining a network of quality friends and
trusted friends who can give the parent a respite (58). He also makes it clear that
the beleaguered parent of a special needs child needs to also make quality time for
non-disabled children in the family and to maintain a healthy balance.
One of the most troubling aspects of raising a special needs child is
socialization. Author Gina Gallagher, in her book (co-written with Patricia Konjoian )
Shut Up About Your Perfect Kid, describes her daughter Katie’s turbulent efforts to fit

6. Term Paper: Parenting Children with Special Needs 6
into school. Katie, a fifth grader with Asperger’s Syndrome, wrote an essay in which
she mistakenly represented herself as suicidal and advocating school violence. Katie
did this to gain ground socially in elementary school (Gallagher, Konjoian, 32). One
area the author’s of this layman’s guide don’t speak about is how to solve those
socialization problems. There are numerous schools of thought on helping the
special needs child develop relationships, however.
The Child Development Institute recommends creating social activities and
“play dates” for the child. The group’s website even suggests trading in kind with
other parents and their children for mutual play times and activities. One of the aids
in the socialization process that many groups, including the publishers of the
website Special Kids, Special Help (through the Boston Medical Center) recommend
is working with schoolteachers to encourage group interaction. The teacher, it turns
out is not just an aid in socialization, but in the entire education process.
One of the issues that many parents of special needs children, including the
aforementioned Gina Gallagher, never anticipate is creating and Individualized
Education Plan for their child. Penny Williams, author of Boy Without Instructions,
writes about the struggles of parenting a child with Attention Deficit Hyperactive
Disorder and planning for his education on her own. The Individualized Education
Plan, on the other hand, are written stipulations agreed on between school
educators, administrators and parents. The plan, known commonly as I.E.P., is open

7. Term Paper: Parenting Children with Special Needs 7
to students requiring special education and is reviewed by all the parties once a
year. The I.E.P. helps parents and educators on an academic level the way efforts to
socialize help the child develop relationships. Parents and educators use the I.E.P. to
develop a plan to navigate the difficulties the special needs child will encounter
during the school experience. On a personal level, these I.E.P. stipulations for my
own child first included speech therapy, aids for hearing impairment, and
alternatives to physical education.
My daughter Anna had an I.E.P. worked out for her well in advance of first
attending our local public school’s pre-kindergarten program. Like Gina Gallagher, I
had never heard of an I.E.P., but my relief was palpable once the process began.
School administrators were listening to my wife and I with warmth and we hadn’t
always encountered that as parents of a special needs child.
The month we started getting answers as to my daughter’s disability was a
breaking point for the three of us. Anna was six months old. I’d taken her two
months earlier for her first head C.T. Scan. On the morning of the scan, Anna had
been a joy. She’d blown raspberries at the hospital staff and then taken a bottle
while she watched the whirring machine. This was unusual, because this was a child
who rarely slept and was generally upset. By six months, we had a name for her
disorder. Crouzon Syndrome. John’s Hopkins University would soon make the
diagnosis official and confirm that all the genetic markers were in place for Crouzon.
The disorder involves a malformation of the cranium in which the skull plates fuse
together too early. The bones of the face do not grow without manual extraction.

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My wife Lori and I didn’t start out as parents of a special needs child, but
simply as parents in need. Parenting a child in pain was difficult not only because of
her suffering, but because we had to advocate on her behalf. Anna’s neurosurgeon
was convinced the toddler would need a shunt of for hydrocephalous becauseof
lack of cognitive development. We had to prove Anna could walk and talk. Walking
and motor development lagged behind, as did toilet training. Anna did every task on
what seemed to be her schedule. In other words, we had a daughter who sat in the
middle of whichever room we placed her in, Buddha-like, and gave tiny
dissertations.
My point is not to highlight the negative aspects of parenting Anna. We’ve
been in study for the majority of her life, which has made us stronger parents. One
of the issues we faced was her Sensory Integration Disorder. We had a child who felt
scalded by lukewarm bathwater and refused to eat anything but garlic toast and
pasta. Thanks to books like Carol Stock Kranowitz’s The Out-of-Sync Child, we were
able to recognize what was going on. We worked on a lot of Kranowitz’s exercises
that include bear hugs and rough housing (197-199). At twelve years old, Anna still
cringes at back scratching from anyone but her mother and screams at normal hair
brushing routines.
Hearing is another matter that is always in flux. At four years of age, Anna
would answer routine questions with an exaggerate “what” in the manner of an
elderly person. By the time we figured out that she truly had hearing loss, she was

9. Term Paper: Parenting Children with Special Needs 9
already at a sixty percent deficit. Even though her I.E.P. formerly stated that she use
the schools in-house hearing enhancement devices, she now refuses. This is one of
the more interesting aspects of parenting a special needs child: systematic rebellion.
Anna wants normalcy in her life. She doesn’t want to have to remind teachers to use
the FM System and she doesn’t want them “bugging” her. My own parents, as blind
individuals rebelled against social systems in place during the 1960’s, so I should
have expected this from Anna. My father has spent his life refusing many of the
benefits that are afforded to him as a disabled individual.
One of the books I read that helped me understand Anna’s difficulties and
that I returned to for this paper was Jeanne McDermott’s Babyface: A Story of Heart
and Bones. McDermott, like Gallagher and Konjoian, talks about the myth of the
perfect child and how this was shattered by giving birth to a son with Apert
Syndrome. Apert has many anomalies similar to those of Crouzon (coning of the
scull, protruding eyes), but also is marked by webbing of the feet and hands.
McDermott talks about something we are now experiencing with Anna. Eventually,
special needs children assert and socialize themselves. McDermott stopped giving
explanations to her son Adam’s classes about his disorder, and then so did he.
Eventually the children find their own way.
McDermott writes as a scientist and matter-of-factly talks about her son
Adam’s Apert Syndrome almost like a flip of the genetic coin. For me, as a parent, I

10. Term Paper: Parenting Children with Special Needs 10
believe that God is at work in all things. Anna has recited her story in front of large
school and church groups and I believe he is using her to further de-stigmatize
special needs kids. As she says in the autobiography that she reads before groups:
“My life has been kind of difficult, but I always pray to God for help. And he always
comes through. I love Jesus, and believe everything the bible says. God says He will
always be with me, and He always is. And I think that’s really cool. I have been
baptized and would do anything in the world for God! So there you have it
folks…that’s my life. I’m on my way. I don’t know where I’m going, but I’m on my
way!”
If this paper serves any purpose, it’s to illustrate the idea that although there
are challenges to parenting a special needs child, we live in a remarkably forward
looking time. For every name a child like Anna has been called, or stare she’s had
ignore, there have also been countless opportunities for her to make friends, get a
quality education and inspire others with her ideals. As we always tell her, she has
two choices in life: use the opportunities available, or languish. Thanks to the many
of the advances that have come about in past decades, she may surprise us with her
use of opportunities put before her by God.

11. Term Paper: Parenting Children with Special Needs 11
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Gallagher, Gina & Konjoian, Patricia (2007), Shut Up About Your Perfect Kid: A
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Helping Your Child with Socialization (2015), retrieved from:
http://childdevelopmentinfo.com/ages-stages/school-age-children-development-
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Kranowitz, Carol Stock (1998), The Out-of-Sync Child: Recognizing and Coping with
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McDermott, Jeanne (2000), Babyface: A Story of Heart and Bones, Bethesda,
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