An Enduring Understanding of a Teacher's Role..

Before, I end my blogging journey and investigation of Parents and Families of Children with Disabilities, I feel it is important to connect the knowledge I have gained through this investigation, to how my role as a teacher. Dr. Carr posted a PowerPoint with a wealth of information on, Collaboration Among School Personnel and Families. Through this PowerPoint, I was have gained a better sense and understanding of my role as a teacher and how I can positively impact and promote well-being of children with disabilities and their families. Below, I have identified key points that define a teacher's role:

Attitudes and Values:
•Regular teachers believe ALL students can succeed.
•Personnel accept responsibility for learning outcomes of students with disabilities.
•Personnel and the students are prepared to receive a student with disabilities.
•Parents are informed and support program goals.
•Special education staffs are committed to collaborative practice.

Central Role of the Teacher:
•The classroom teacher should have a central role in the process.
•The teacher must be involved, not informed. Serious conflict can result from ignoring the teacher.
•Mutual respect, communication, and equal footing are essential.
•Effective teams recognize the central role of the classroom teacher.

Value of Communication:
•Ineffective communication is the major source of rumors, misunderstandings, and conflict.
***In the interview I shared, the mother of the child with a disability also voiced that miscommunication was the cause of misunderstandings and she went on to state that communication is vital***
•Even the use of psychoeducational jargon can cause problems.
•Teachers who may not ordinarily hear technical terminology may be threatened by it, fearing the appearance of ignorance.

Effective Instructional Methods:•Teachers have the knowledge and skills needed to select and adapt curricula and instructional methods.
•A variety of instructional arrangements are available.
•Teachers create a cooperative learning environment and promote socialization


Collaboration, Functioning as a Team:
1. Parents-For as many students as possible, it is important to secure the participation of parents.
-The parents or guardian can provide a family history, important information about the child, and emphasize family values.
-For long-term planning, family values and priorities are extremely important.
-Parents can also provide important information about the child's functioning in the family, the neighborhood, and other groups.

2. Classroom Teacher -The teacher will bear significant responsibility for implementing the IEP and for educational planning, instruction, evaluation, and reporting.
-The teacher should be provided the necessary assistance and support to develop the appropriate learning environment, prepare the peer group to accept the child, adapt the curriculum, and supervise or coordinate the activities of teacher aides, volunteers, peer tutors, and others.

3. Special Education Teacher-The special educator can serve many role functions, depending on the circumstances and the arrangement of the inclusion program.
-In a full-inclusion model, the special education teacher will co-teach with the regular classroom teacher. As such, the special education teacher will share the responsibilities of IEP implementation, planning, instruction, evaluation, reporting, and daily instructional activities.
-The teacher will bear significant responsibility for implementing the IEP and for educational planning, instruction, evaluation, and reporting.
-The teacher should be provided the necessary assistance and support to develop the appropriate learning environment, prepare the peer group to accept the child, adapt the curriculum, and supervise or coordinate the activities of teacher aides, volunteers, peer tutors, and others.

Rationale for Working with Families:
•Children grow and develop within the context of their families
•Variables that affect families, also affect children in direct or indirect ways
•Systems theory helps portray how this works

Family Centered Practice
•Value your Partnerships
•Family Involvement fosters better outcome for children
•All families have strength find them

•Think of collaboration as a dance between partners- sometimes family takes the lead and sometimes professionals take the lead



•Build positive relationships

In order to provide care for others, one must provide care for themself first...

I wanted to take a few steps back and address questions I have posed at the beginning of my research:



 "How do families meet the needs of their child with a disability?"

 "How must the family  adapt and accommodate to meet their child's needs?"

My findings from a recent article helped me to answer these questions. A parent can only meet the needs of their children, if they first meet their own needs. Self-care is one of the most effective strategies for parents  to deal with stress and meet the needs of their child.
Below, I have included excerpts from the article that helped me to identify how parents can better meet the needs of their children:

The Power of Collaboration

Through this blogging experience I have really began to value the support of my fellow colleagues. I have begun further investigation, by viewing other classmates blogs. Another student in my class has posed similar questions about how stress affects families who have a child with a disability. Her post from Sunday, April 22nd really narrows down the issue and identifies the causes of stress and how parents react to this stress, coping strategies. I have reposted information from this blog to better serve and deepen my investigation:

No parent wants to think about their child as being a burden, that the child is to blame for the stress.  What are these causes?  What do parents do deal with the stress?  How do they ever have time for themselves if they are constantly worrying about their child?
I found two videos, part 1 and part 2, of Caring for Children with Disabilities in Ohio: The Impact on Families.  This video discusses the various stressors that come with having a child with a disability.  Research has shown that parents that have children with disabilities experience higher levels of stress, lower employment opportunities, and the diminished rates of well being compared to other families.  The video explores the impact in terms of financial, emotional, and social well being.  I found these videos to be of much more interest due to its focus on just Ohio families.  To truly understand where parents are coming from, one will not learn from reading in a textbook.  These videos include actual parents who are speaking about their experiences.  As a future educator, I found this video to be very intriguing, giving me a better understanding of what parents are going through.  One father in this video quit his job so he could take care of his child to take him to and from school.  Another mother speaks about how when her child was being diagnosed the doctor told her there was no cure for her child and don't worry about it.  This mother felt as if she was on her own to research what her child was being diagnosed with.
http://www.youtube.com/watch?v=rZa9tlH7Mw0&feature=related

http://www.youtube.com/watch?v=uqjmmUaAPXg&feature=relmfu

Growing up with a Brother/Sister with Special Needs

Siblings Reactions..

When a child is in crisis, the everyday problems of her brothers and sisters seem to recede into the background. Reactions differ. Siblings may become superachievers to get their share of the attention--or they may seek negative pursuits, for the same reason.
Resentment is also a natural reaction when another child in the family takes more attention and more financial resources than you do.

Our child's siblings are wonderful with him, however, they do sometimes feel that he gets away with more. But so far we have been able to talk this out with them.
--Julie, mother of four-year-old Sean (diagnosed PDD-NOS)

How Parents can be Supportive:

It goes without saying that a fair share of your time is far more important than possessions, space, or even privacy. It's essential to make some special time for your other children. Some parents have a meal out, go to a movie, or enjoy an activity with their other children each week, and swear by the results. Ensure that your other children can find time to talk with you about school, friends, ideas, and concerns, without interruptions from your child with a PDD. You may need to be flexible about bedtimes one night each week, allowing another child to stay up just a bit later than usual to enjoy some one-on-one time with you. Another way to carve out time is to wake one child up a bit early once a week for a cup of cocoa and some quiet talk.

http://www.patientcenters.com/autism/news/stress_family.html

Siblings of Children with a Disability

After reading a fellow classmates blog, I discovered this helpful article about siblings of children who have a disability. It discusses their feelings and emotions of their role in the family.

http://www.ccakids.com/Articles/Living%20With%20A%20Sibling%20Who%20Has%20A%20Disability.pdf

Also, I discovered this video that provides a visual and another perspective of what life is like being a sibling to a child who has a disability:

http://www.youtube.com/watch?v=6ooWPy7HuTc

Interview

I recently conducted an interview with a parent who has a child with a disability, specifically down syndrome. I have included an essay I wrote that demonstrates insight I have gained from meeting with this parent:

As a future teacher of young children, I am dedicated to understanding and meeting the needs of all children in my classroom. Through my studies, I have gained an understanding of the needs of families of young children with and without disabilities, capacity to work with families from diverse backgrounds, and skill in supporting family involvement in early education. I hold the belief that building partnerships and establishing open communication with a child’s parents and family is crucial. Furthermore, a child’s development is directly influenced by parental involvement in education. Parents are a wonderful resource that can provide teachers information about the needs of the children in their classroom.

As, I continue my studies to become an educator I feel it is vital that I possess the skills, knowledge, and motivation to help me build strong partnerships with the parents and families of the children in my classroom. I must be able to communicate any concerns and ask appropriate questions of the parents, so that in return, I am able to provide the child and family proper support. I recently designed an interview for parents and families of children with disabilities that included questions to help me better understand the scope of the family’s situation and to better meet the needs of all members involved. I tested out the interview I created, by meeting with a mother of child who has Down syndrome. This compassionate and caring mother shared her times of joy, despair, hope, and love that she has experienced, while raising a child that has a disability. Through this interview, I gained an understanding of a parent’s needs, goals, and desires for their child’s education, regardless if their child has a disability or not.

I opened the interview by asking the mother to simply tell me about her son: what are your child’s strengths and interests, what is most important to your child. She began by sharing, “My son XXXX is 14 years old and an 8^th grader at XXXXX junior high school. He is one of four children and has a twin sister who is also in 8^th grade but attends XXXX”. XXXX’s mother discussed how social her son is, “XXXX absolutely loves people, no matter who you are or where you come from. He makes friends instantly and has great verbal skills”. I also learned that XXXX loves sports, not to play, but to coach. He helped as an assistant coach for the junior high school’s football and basketball team. XXXX’s family is most important to him and he has unique and special bond with his much older brother, XXXX. XXXX’s mother finished the question by saying, “Oh and yes, one more thing, XXXX has Down syndrome”. I was touched by this response, how raw and real a mother’s love is for a child no matter what the circumstances may be. She defined XXXX by who he is as a person; Down syndrome is not who her child is, but is a part of him.

Next, we went on to discuss family life and how having a child with a disability affects a family. I shared with XXXX’s mother about how research has indicated that raising a child with a disability can sometimes cause strain on a marriage due to stress and constant needs of the child. I asked the mother if she felt this way and if her marriage had been affected by raising a child with Down syndrome. Her response was, “It has made our marriage/family stronger in many ways – you really appreciate things much more.  We are blessed with 4 unique, special children”. Her response was uplifting, because many people assume that raising a child with a disability is a burden to parents. In reality, they wish what’s best for their child, just as every parent does.

We also, discussed support systems of the family. Extended family has always been an important source of support for XXXX’s family, “Our family has always provided great support… aunts, uncles, grandparents, and cousins have always accepted XXXX for who he is and have treated him like everybody else”.  XXXX’s mother went on to mention their family’s network of friends who have always been there in times of need and care. She said how blessed and thankful she was for her friends to accept her son no differently than anyone else. “Friends and family are the greatest gift I can give my son and I will forever appreciate the strength, love, and support, which they have given me”.

Discussing with the mother about her son, her family, and her support systems helped me to understand where she was coming from. Genuine and heartfelt conversations are what help a teacher to build trust and a relationship with the child’s family. At this point in the conversation we had not even discussed anything related to the child’s educational experience, yet I was starting to feel a sense of comfort and trust from the child’s mother.  Building comfort and establishing honest communication is essential for building a relationship between a teacher, child, and parents.  “Relative to parent/family and professional relationships, trust is the foundation on which emotional and psychological support programs are based. Indeed, little is accomplished in the absence of trust, and emotional and psychological assistance, collaboration, and partnerships will be dependent on trust-based relationships and interactions” (C. Fiedler, R. Simpson, and D. Clark, 2007).

Eventually, we did discuss the child and family’s history of school experiences. I asked XXXX’s mother to describe her relationship with teachers and professionals at school: “For the most part the teachers and staff have been very accepting of XXXX.  There are times when you have someone that just does not understand children who have special needs and are not as flexible or as willing to modify teaching styles.  XXXX is very capable of being in the regular classroom. He is able to take in everything auditory and only struggles with his fine motor skills.  Most teachers are very good at adapting work to fit his strengths and needs”. Afterwards, I could not help but to think that as an educator and professional, the role is to empower children and families. Furthermore, as a teacher we must reach out and accommodate to the needs of our students and should never expect a child to adapt to instruction.

We then discussed how the school meets and accommodates to the needs of her child. XXXX’s mother shared, “For the most part.  XXXX does not fit into any one mold though since he is very high functioning.  It has been a challenge to find the right mix of regular classes and special education classes”. She went on to add that through the help and support of multiple staff members, they have been able to find a balance of classes for her son. Unfortunately, there has been an occasion where XXXX’s needs were not met due to a lack of understanding from staff. XXXX’s mother explained how a teacher and her son would become frustrated and unable to work with one another, so she removed her child from the situation. When working with any child, with or without a disability, a teacher should never make a child feel frustrated. On a more positive note, XXXX’s mother shared with me a teacher who had made a difference in her son’s life:

“XXXX has been so fortunate to have had so many loving, caring teachers

starting in pre-school and up until now.  He relates so well to those are willing to take the time to get to know him and take a genuine interest in him.  He is so keen with picking up on who is comfortable with him and tends to gravitate towards them.  Simple things like gearing work towards his interests of family or sports have been key.  Also making work manageable and breaking in down into achievable goals.  Being able to find the right mix of fun and firm has been key”.

Next, I asked XXXX’s mother how she made certain that her son’s needs were being met. She stressed the importance of communication, “Communication is vital.  I try to meet with his case manager at least once a month and we email almost daily.  She is excellent at keeping me informed and heading off any potential problems/miscommunications”. Establishing open communication is vital for all parents. According to C. Fiedler, R. Simpson, and D. Clark (2007), “while the content of interactions between professionals and families cannot be discounted, neither can the listening and communication process itself. Commenting on this importance, a variety of authorities have observed that the technical information provided by professionals, may be secondary to the listening and communication process itself”. Furthermore, educators and professionals should recognize the communication process as not only an opportunity to attend to and learn from parents and family members, but also a key means of showing interest and conveying emotional and psychological support (C. Fiedler, R. Simpson, and D. Clark, 2007).

In closing, XXXX’s mother shared with me her hopes and dreams for her child’s future, “Our hopes and goals for XXXX is to one day be able to live independently and to have a job doing something he loves – most likely something related to sports and coaching.  He has great value to contribute to society”. She went on to explain that having a child with a disability is no better or worse, just different; and they should be loved and treated the same. I will hold on to this piece of advice and apply her words as actions in my classroom- treating all children the same no matter what their differences may be. Establishing relationships with all parents built on trust and having open communication will by my goal for all children and their families, with or without a disability.

How Parents Can Become Resilient:

Factors affecting the experience of daily parenting stress:

1.       Parental well-being

Thus, the parents with better well-being and who can maintain a more positive mental health status may be better able to better cope with stressful demands of caregiving.

2.       Marital Quality

Recent research has found that having a good relationship with an intimate partner is associated with decreases in parenting stress, while single parenthood predicts greater levels of parenting stress.  A supportive partner likely shares the burden of caregiving better, perhaps compensating for the generally high levels of parenting stress in these families.

3.       Parent–child relationship quality

A positive parent–child relationship may facilitate better functioning across a range of possible adaptive outcomes, including lower stress.

http://onlinelibrary.wiley.com.proxy.libraries.uc.edu/doi/10.1111/j.1365-2788.2009.01220.x/full

Comparison of Parenting Stress in Different Developmental Disabilities of Children

Parenting stress in families with special needs is largely determined by overall nature of the disorder in children. Some examples are:

·         Chronic disabling conditions, both medical and mental, make extra demands of parents, resulting in stress

·         Children with behavioral and developmental disorders causing higher levels of parenting stress than children with chronic medical conditions.

·         Besides type of disability, the family’s coping resources and the formal and informal supports it can muster determine the level of parenting stress

·         Although ethnicity is not related to parenting stress, lack of proficiency in English and low parental education seems to be important determinants of some aspects of parenting stress.

·         Parents of children with developmental disorders have reported high levels of stress associated with the irreversibility of the disability, anticipated limitation of motor or intellectual potential, increased burden of care, and social stigma attached to disability, especially cognitive. Unlike medical and behavioral problems, developmental disabilities are often visible, contributing to social isolation of the parents.

This finding underscores the need to provide psychosocial supports and counseling to both parents and children.

Research is from:
http://www.springerlink.com.proxy.libraries.uc.edu/content/61467h253x51058w/fulltext.pdf

Parental Stress With Special-Needs Children

I found an article that compared the stress of parents who have a child with a disability to parents who do not have a child with a disability. Here is what the results indicated:


Parents of children with disabilities had a greater number of stressors and a higher number of days during which they had at least one stressor. They reported having at least one stressor on 50 percent of the study days compared with 40 percent among the other parents. Parents of children with disabilities also reported experiencing a greater number of physical health problems.


This article includes research to support that a parent of a child with a disability face higher levels of stress throughout the day. The findings suggest that parents of children with disabilities would benefit from stress-reduction strategies. In conclusion, I have come to discover that parents of children with disabilities are in need of support
Parental Stress with Special-Needs Children

Becoming a Resilient Family

Child Disability and the Family Structure

“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109).

Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family.

Site that expands on the above topic: http://www.ncaonline.org/monographs/17family.shtml

When Parents of Children with Disability Divorce

Some Statistics:


The Wall Street Journal reported in November 2008 on recent research suggesting that divorce rates of couples raising a child with a disabil-ity are even higher than the national average. Some nonprofit organizations have reported divorce rates as high as 75 to 85 percent for this popula-tion.


Other reports have claimed these percentages are overestimated. Indeed, a recent study by Vanderbilt Univer-sity’s Kennedy Center actually found divorce rates of parents who have a child with Down Syndrome to be 33 percent lower than in marriages where the parents do not have a child with a disability.

2008 study by the University of Buffalo cited by The Wall Street Journal which reported that parents of a child with Attention Deficit Hyperactiv-ity Disorder are nearly twice as likely to divorce before the child reaches 8 years old as a couple with a child with-out a disability


This article investigates the stress of cost of a child with a disability after parent's divorce:
http://www.sirote.com/tyfoon/site/members/D/3/F/2/4/E/1/E/8/B/file/Kathy%20Barr/TheCounselor_Spring%2010_KBarr.pdf

Parents of Disabled Children "Their Today":

I wanted to get a parent's perspective of what it is like to raise a child with a disability. Divorce is common in families that have a child with a disability due to the stress and responsibility of raising a child with special needs. I want to know what a day in the life of parent of a child that has a disability is like? Reasons why parents may choose to separate?


This video is a collection of various feeling, and struggles that a parent of a child with a disability faces daily. It provides a range of examples from a parent who forgot to order a child's prescription and it won't ship for 10 days to a parent who already feels isolated and must build a tall fence so their child won't escape. The video is told through various parent's perspectives addressed to teachers, physicians, therapists, etc. These are the people who chose a career that CAN make a difference in the life of a child of a disability and their families. As a "teacher in training" I found these messages to be powerful:

Through the eyes... of a parent that has child with a disibility

Before I investiagte the statistics:

Impact of Child Disability on Family...

Before, I begin to further investigate my original questions: "How families cope with the stress of having a child with a disability?" and "How many families remain in tact, divorce, etc" I want to deepen my knowledge of the impact of child disability on the family. What are the child's needs? How must the family  adapt and accommodate to meet their child's needs? How do these changes affect the family's everyday life? Do theses changes cause the family stress? Essentially, how is the family dynamic affected by having a child with a disability?   

Families with disabled children represent a sizeable share of all American households. Living with a disabled child can have profound effects on the entire family, which in turn can affect the health and well-being of the child who is disabled. Much needs to be learned about how children’s health affects their  parents, siblings, and other family members and about how family characteristics and resources modify those associations. I have found an article the reviews what is known about the effects of child disability on the family, provides an overview of the complex needs of and multitude of resources available to families of disabled children, and concludes with suggested directions for practice, research, and public policy ((Reichman, Corman & Noonan, 2007). 

http://www.springerlink.com.proxy.libraries.uc.edu/content/665707u847134377/fulltext.pdf

An investigation of how child's disability affects the family?

How does a child's disability affect the family?

Coping Strategies

• How do families meet the needs of their child with a disability?
• How do families manage the stress and responsibilities of having a child with a disability?
• What resources outside of the home do parents utilize? 

Family structure

• How many families remain intact?
• How often do parents of a child with a disability separate or get a divorce? 
• At what point in time of the child's life does this typically occur? 
• How are other family members affected by the stress of having a sibling, grandchild, cousin, niece/ nephew with a disability?