Special Needs

Lora D. Purcell

SOC120

Instructor Sue Meckert

February 20, 2012

Beginning a new career choice at my age; has been a bit overwhelming. I have had to write

many challenging papers. This paper for SOC120 has been especially difficult for me to write. I

could not relate to the topics my instructor gave us to choose from, none of them clicked with

me. We were given permission to write about any topic, as long it was okay with her.

I chose a topic that is very dear and passionate to me, special needs children. That is why it

becomes difficult for me to write theory based papers, I write from my heart and tend to forget

to add the theoretical points to my paper. I hope to share how my thoughts on the subject of

special needs will be informative and will enlighten the reader.

Trying to inform the public of the special needs environment is a challenge. People need to

be taught how to react and respect them, along with family members that care for them. As it is

stated; America is a wonderful melting pot of cultural diversity. I believe that the majority of

people are open minded and try to be fair. Something happens, though, when some people come

in contact with adults and kids with disabilities. It is understandable to be fearful of the

unknown. (1)

The community I live in is becoming more aware of how they should react and respond to the

special needs people. The schools must support them and bring in the correct teachers, supplies

and have the building accessible for all that is required of them. Daycare centers, restaurants, and

all public businesses have the demands of regulations and respect for the special needs

environment. Children who have special needs that are affected or heightened by their social

surroundings need unconditional acceptance of the community where they live. It is not

negotiable. It is their right. By acceptance and support you are investing in not only that

person’s future, you are investing in the community as well. (2)

Schools must meet state requirements in all areas. First the IDEA act, Individuals with

Disabilities Education. In my state, Indiana, abides by Article 7 of the Indiana State Laws;

under Indiana Department of Education/Center for Exceptional Learners. The division provides

leadership and state-level support for public school gifted and talented (grades K-12) programs

and for student with disabilities from ages 3-21. The division ensures that Indiana is in

compliance with the federal Individuals with Disabilities Education Act, through monitoring

of special education programs, oversight of community and residential programs, provision of

mediation and due process rights and sound fiscal management. (3)

I have worked with special needs children and their families for 20 plus years. I have been

involved with ignorance, failing to abide with regulations and people not recognizing their own

faults in the way they see special needs. The list is long, so I have listed just a few of them.

*Negative attitude or stereotyped beliefs people have those who are “different” or those

with disabilities. *Ignorance, lack of information and lack of understanding of people who

disregard, neglect or avoid the parents and children with special needs. * Hidden or unidentified

lack of pressure on the school systems to improve, increase the funding and innovate in

providing services to exceptional educational students. (4)

The only way to end this discrimination is to be more active in learning about special needs.

My experiences with these children have been the best teachers in understanding them. Each one

has a story and a way to touch you forever, just a smile and a gesture of their hand speaks

volumes. These children are not to be feared, they need to be understood and freely

accepted in this society.

Tori was my best teacher, I say teacher, even though when I first started working with her,

was a nine year old beautiful girl, with the biggest brown eyes. I was working at a daycare

center when I met Tori, she had been a client since she was four. She was a happy, walking,

talking, and running, a “take care of myself” kind of young child. As time went by, her disease

progressed; she no longer could walk by herself, talk, run or go to the bathroom without

assistance. She had been diagnosed with Sanfilippo Syndrome. It is a mucopolysaccharide

storage disorder, also known as MPS111. There is no cure, just ways to manage the challenges.

(5) She also suffered with seizures, that needed to be timed, for if they went longer than four

minutes, I would have to call 911 and her parents. When I began caring for Tori she could still

feed herself and she would make noises. She would acknowledge me with her smile. Slapping

her hands on the table were also one of her ways. I eventually had to push and carry her; she no

longer had balance or muscle control. She no longer could feed herself and all of her food had to

be smooth for her ability to chew was gone, she choked easily. Making her drink all liquids was

vital, for she needed to stay hydrated, I also had to keep her changed. By now communicating

with me was done by grunting or screams of discomfort.

By having Tori, I got to see how society related to her and her family. They are well

known in our community, a wonderful family, so, many of the community accepted Tori, even if

they did not understand. I think I could apply deontology in this area of my paper; The Golden

Rule applies because “people don’t want people to act badly toward us, so we shouldn’t act

badly toward them.” (6) Some would stare, ask rude questions, and disregard any means of

reaching out to a special needs child or her parents and older sister. They did not take the time

to care how Tori suffered, they saw her as “different” or “odd”. People did not know how this

family struggled emotionally, financially; the insurance would not pay for all of the needs she

required to live. For them, trying to live a normal life was no concern to some, they did not have

to live it, therefore, they did not worry about it.

I believe that emotivism can be applied at this point; it does offer perspective on ethical

claims that eliminate much of the traditional kind of argument based on reason. It can be seen

as moral evaluations as simply the expression of whether we respond to a given act by liking it,

or not liking it. Something is good, on this view, if it is something about which we feel good;

something is wrong if it is something about which we feel bad. By accepting the special needs

child and their families, it can be accepted by liking it and feeling good about it or not. (7)

Accepting the special needs child and their families can in fact, be accepted by liking it and

feeling good about it or not.

As time went by, Tori could no longer be a part of a daycare center, her disease was

progressing and she needed professional care at her home. I had the opportunity to watch her

one night, and her regression was so sad. If everyone could see what these special children have

to go through, they may understand why we, as advocates, get so upset when we see them not

being treated with the respect they deserve. Her parents had to always deal with someone

parking in handicapped spots, staring at Tori when they went out, shaking their heads in pity.

Her older sister, Erika, had to handle her parents being a parent of a special needs child and a

normal child, she had to respect her parents, Erika loved her sister, but she had to be put on the

back burner from time to time. If Tori were in the hospital and her parents could not leave her,

they missed some of Erika’s functions she was involved with. She never complained, she never

resented Tori, she was an amazing big sister. The world does not see that. They just see what

they see, a child who cannot talk, walk, feed herself or live a normal life. It is so unfair for

these people to judge a child and their family, until you live it, or experience it, how can they

be so naïve? It is hurtful to be so disrespectful. It is discrimination, I really believe that. I have

known parents that had to keep pushing the school to accept their child and listen to them.

If the parent has taken the child to a doctor, has been tested and has been diagnosed with a

disability, the school or center must accept the child, must keep records on the child and have

regular testing and have it documented.

What can parents do? Children with special needs are entitled rights and to services in

school under federal and state laws. Parents should always advocate for their child and must

be proactive and take necessary steps to make sure their child receives appropriate services. The

process can be confusing and intimidating for parents. Also some teachers do not respond well

and can come across and insincere, uncaring and rude. Here are some tips for parents to stay

aware of their child’s rights. * Parents should request copies of their school districts Section

504 plan. This is especially important when a school district refuses services. *If the school

district does not respond to your request, you can contact: U. S. Department of Education

Office for Assistance. If the school district refuses services under the IDEA or Section 504

or both, you may choose to challenge this decision through a due process hearing (a legal hearing

in which you and your child have an advocate who can help express your views and concerns).

It may also be necessary to retain your own attorney if you decide to appeal a schools decision.

* Other resources for parents include: the State Department of Education, Bazelon Center for

Health Law. (8)

I realize I have not addressed the special needs community as a whole in this paper, my

main objective was Tori, her life as a special needs child and how her parents lived with her

special needs. Their strength, closeness and love for Tori gave such a feeling of goodness that I

want the world to realize special needs are just two words: not to be made fun of, not to

scared of or to be intimated by. The families and children of the special needs, want and

need to feel a communities’ support, they need to know neighbors will be an advocate for

disabilities; giving support to the families give them a feeling of comfort and acceptance by their

community.

Funding for special needs is in great demand. The 1998 Act gives the minister for Education

and Skills certain functions in respect of funding, including the funding of support services for

students with disabilities. Schools must use their available resources to ensure that the

educational needs of all students, including those with disabilities, are identified and provided

for. Boards of Management are required to use the state resources provided to the school to

make reasonable provisions and accommodation for students with disabilities or other special

needs, including, where necessary, alteration of buildings and the provision of appropriate

equipment. The Act also provides that the criteria for funding of schools may allow for the

payment of additional grants to schools, having regard to the level of educational disadvantage.

(9)

As our textbook points out, all the theories work together, just as a community would.

Basically, one supports the other, while one protests a little, but in the end, we all should want

the same outcome. The special needs environment needs more advocates, they need people who

are willing to fight for their rights and be a voice where there is no voice. With all my time with

my special needs kids; I have such a respect for them. They are individuals, they are different,

they do not realize it, and they think they are the normal ones, we, the community are the

problem. They feel good about themselves, they appreciate praise, they give affection and

attention when we have not noticed it needed to be given. When one of my kids had anger out-

bursts and began screaming, throwing things and running around the room uncontrollably

and they finally give in to exhaustion and have reached their calmness level; they would end up

in my arms, crying, because the only understanding they have is someone “just made me mad”.

I would sit there and hold them, comfort them and love them. These children are so precious.

They need love, they need understanding. They also need, no, they deserve respect and attention.

The society is warming up and welcoming these wonderful children into their world, but still not

fully understanding what their role is. Education is the best advice I can give. Learning how to

approach them, learning how to deal with their issues, and realizing respect and emotional

support can go a long way. The more information a person can soak in, the more aware they

become of the special needs environment.

If I had never been involved with Tori and my other kids from daycare, I would not have been

able to begin on how to explain what true blessings they are. I have learned many regulations, I

have learned about seizures, I have learned about administering medicines. I know how sudden

changes disrupt their lives, they need stability, consistency and as much normalcy as they can

endure for their lives to function on their level. I have found myself searching for the special

things they have connected with for security. I would make sure to save Lego magazines for

Trenton. He absolutely was fascinated by how they connected and would build the most

amazing things out of Legos and K’nex. Cole needed his electronic games, he was so smart with

them. They comforted him and kept him focused. Aleahya liked Tinkerbell, cats, and making art

projects, they were her friends of comfort. All those years I was the caregiver, but the end result

was, I received so much. I learned so much and now I give back by advocating and supporting

them.

We lost Tori a couple of years ago, but her memory lives on every day. I think of her

constantly, talk with her mom and just remember the difference she made in everyone’s

life she came in contact with, which was MANY. She was so very special and I miss her.

I keep fighting for her and the special needs community as often as I am able.

Trusting your feelings with the child will put you at ease, along with the child you are with.

Here are a few suggestions to help you with the special needs child: *A family is the most

important support a child can have. *Every family and every child has strengths. *In the early

years, help and support are very important. *Your child may need special services and supports

to learn. *There are laws that can work for you and your child. *You should have a dream for

your child. *It is important to have a plan that will help the dream come true. *Include your child

in activities with all children in the community. *You are not alone. Reach out – others have

been there and can help. (10)

At the age of 47, writing a story about this misunderstood issue, has surprised me, because

I would have never guessed all my time that I spent with those dear children, they gave me such

inspiration, to write about their rights, their families, their goals and affection. I have learned

that sharing my life with special needs children and their families, is the best way of learning

what it means to be a part of their world. They give love, expect nothing in return. Only respect

and attention for what they need to continue to be a part of today’s society. All I ask of the

world, is, next time you see a child or adult in a wheelchair or cannot talk, that is screaming out

of control, please do not judge, or stare, or shake your head in disbelief; just give a sincere smile

and thank God for them and the valuable lessons they teach us every single day. God made them

special for a reason, not for them to be different and inhuman, for us to become humble, loving,

and compassionate. Just give them a chance; they give us one every time they look at

us and reach out with their smile. They can move mountains, why stand in their way? I thank

God for giving them to us every day.

I appreciate my instructor giving me permission to write about this issue that is so close

to my heart. I may not have given the best theoretical paper, but I opened my heart and hope

I gave a different perspective on how to have a heart for the special needs environment. This

paper is dedicated to all my kids that gave me love and understanding and especially to my

Tori-bug, you are healthy once again, my baby girl.

References:

(1) www.spannj.org

(2) blog.syracuse.com

(3) insource.org/AgencyLinks-IN.html

(4) www.livestrong.com/article/14729-handling-discrimination

(5) www.mpssociety.org

(6) Introduction to Ethic & Social Responsibility Mosser, K. , (2010)

http://content.ashford.edu/books/AUSOC120/sect.chap.01,1.7,1.8,1.9

(7) http://content.ashford.edu/books/AUSOC120/sect.chap.01.1.7,1.8,1.9

(8) www.bazelon.org & www.aacap.org

(9) www.citizensinformation.ie

(10)www.selectivemutis