Working With Families

Working With Families By: Stephanie Carpino

The Experience of Disability from the Perspective of Parents of Children with Profound Impairment: Is it time for an alternative model of disability? By: Jane Brett

Introduction • Lots of changes have been made to the ideas and models which informed policy, research and services for families with children who have an impairment. Specifically during the later half of the 20th century • With enhancements of medical knowledge and care, we have extended the lifespan of children who have profound and multiple learning disabilities. There are new bodies of literature out there to inspire families. Parents and their perspectives have also come to be seen as an essential dimension to exploring their own, and children's needs. • This article is attempting to demonstrate that a model that seeks to locate problems and solutions within the individual or social structures is not totally an adequate response to the issues or range of phenomena that the study of disability emphasizes (825).

What’s The Argument? • We need to have a model that considers the imperative and crucial perspective of parents. We need to stem away from the traditional models and address parental concerns as something informative/essential in developing/consulting alternate models of disability (830).

Conducting The Research Questions Being Asked Categories Of Research/Final Thoughts Parents’ Experience of Disability Causes of Disability Relationships with Professionals All parents agreed that their experience of disability should inform a different way of looking at disability and would be a step forward in understanding issues central to this. This new model should be based upon a ‘working alliance’ between parents and professionals (837). • How do you view the nature of disability? • How do you think disability is caused? • How do you experience disability as a parent of a child with profound impairment?

Interview With Parents • Your whole life is centred around your child—where you live, where your child goes to school, what you can do, who your friends are, your income, where you can go, whether you can have more children and so on. • No one asked me if I wanted to do all this, they just showed me once and told me to get on with it. I had no choice—either that or Suzie would still be in hospital. • No one asks me how I am. They look past me or even through me to see Suzie. Aren’t they supposed to be caring for the whole family? • The idea that everyone knows what’s best for us drives me mad. How would they know? They should come and spend a night in my house, have no sleep because of all the suction and then tell me how to live. • What makes me really mad is people telling me they understand when they really haven’t a ******* clue. How can they say they know what I am going through? The only people who do understand are other parents like me.

Interview With Parents • We are the resources, we fund nearly everything. I look after Suzie all day then go out at night to fund raise for something essential like a wheelchair or a new bed. • Everything is down to money so really I know that what help I do get is scant and I have to be grateful for it. Lack of resources adds to the disability. I feel guilty for taking up their precious money. • The nurse came round to see us and stood in my hall saying: ‘You look tired—lack of sleep getting you down is it?’. I could have slapped her face! I had been up all night and she laughed at me! • I know my child better than anyone, I am the expert and still no one believes what I say. I still get some young carer coming up to me, questioning if Billy is using the correct size incontinent pad.

Experience/Expertise Alliance ModelOf Disability Facing Oppression Regaining Identity Openness Understanding Equality Accessing Psychological Support Empowerment Regaining Autonomy

About The Model Why This Model? The Aim Of The Model To represent information in a way that may aid understanding. After listening to parents, it appears that it is this very understanding which is often missing in their lives. If a model aims to provide us with a different way of examining the world of the child with profound impairment, it must be anchored within the experience of disability. • Perhaps optimistically, parents and professionals are placed together in alliance, sharing mutual qualities—true partnership is the key in this model of disability. • The parent is likely to be the principle care-giver, providing the key to accessing the child’s experience. • The family is defined by the parents, and will likely be highlighted as a system of interlocking social relationships which must be accepted by professionals.

Refocusing on the Parent: What are the social issues of concern for parents of disabled children? By: Stephen Case

About The Case Study: • A questionnaire was constructed to analyse the efficacy of service provision for disabled children from the parents’ perspective, as well as the needs and issues pertinent to parents • Results indicate that professionals continue to control the parent–professional relationship, assuming the role of ‘expert’, rather than integrating and consulting parents in a negotiate decision-making process. • Parental needs and issues are prescribed by, thus marginalising and disempowering the parent, and reducing opportunity for parental involvement and participation in an equitable ‘partnership’ relationship with professionals (271)

CATCH! CATCH! is concerned with family-driven research issues, in order to address familial agendas and influence present-day legislation. Therefore, CATCH! advocates for parents, without harbouring vested interests elsewhere, and aims to produce research which is not only accessible to fellow professionals, but also to the parents of disabled children.

Conducting the Research They created an 11 page questionnaire (1995-7) with 114 parents throughout the UK. These individuals were ones who have previously contacted CATCH! regarding treatment and/or research (297). The children within the family sample had a wide range of disabilities:

Sections Of The Questionnaire & Results

When It’s Your Own Child By: Jean Johnson

Methodology Of The Surveys: This article is based on a random sample telephone survey of 510 parents of Kindergarten to Grade 12 public school children who have special needs. There were 3 focus groups, 4 in-depth individual interviews with parents of special needs students and 13 in-depth interviews with experts in the field (30)

Characteristics Of The Sample:

Ten Lessons I Have Learned From Being Lydia’s Mom By: Leigh O’Brien

Leigh’s Personal Account: • “I have been the parent of a daughter with special needs for almost 10 years now; for seven of those years I also have been a single parent. Here I will share my "Top 10" list of things that lone parenting a child with developmental delays has taught me. It is my hope that readers will find some, perhaps many, points of connection: similar experiences, struggles, and responses; or maybe "a-ha" moments of empathic response. I hope you will feel inspired to share your own experiences, to be reminded of the diversity that exists in children and in parenting situations, and perhaps become a stronger advocate for all children and their families” (O’Brien, 88).

Ten Lessons I Have Learned From Being Lydia’s Mom Lesson One Lesson Two However, even if I and other parents in similar situations appear strong, we still need personal, workplace, and societal supports in order to do our best--and sometimes just to make it through another day. • If it doesn't kill you, it will likely make you stronger.

Ten Lessons I Have Learned From Being Lydia’s Mom Lesson Three Lesson Four There is no way one can completely understand what parenting a child with special needs is like unless and until one has done it. • Most parents are doing their best, despite what it might look like from the outside.

Ten Lessons I Have Learned From Being Lydia’s Mom Lesson Five Lesson Six I have learned from parenting Lydia that one size does not fit all. I believe that all children can learn, but not all can or should learn the same "stuff" in the same way at the same time. • Being Lydia's mom has taught me--in ways textbooks never could--that all children deserve to be valued, cared for, and included in community-based settings such as schools.

Ten Lessons I Have Learned From Being Lydia’s Mom Lesson Seven Lesson Eight I have learned that, for me as an educator, the personal and professional are inseparable. Our personal lives do, and must, overlap with our professional lives, our "life's work." • I have learned that a child is an individual first, not simply a product of his or her ability or disability.

Ten Lessons I Have Learned From Being Lydia’s Mom Lesson Nine Lesson Ten However, despite the myriad challenges, single parenting my daughter has been worth every minute! … the benefits--no matter the challenges--far outweigh the costs. This is the most important thing I have learned from being Lydia's mom. • Hardest of all for me has been the realization that no matter how hard you try or how much you want something, sometimes it is not going to happen.

Leigh’s Message: “I challenge students, teachers, and schools to demonstrate a true commitment to the concept of family-school partnerships. I want schools to acknowledge parents as experts on their own children, and to listen to their needs and perspectives. Furthermore, teachers and schools must recognize and respect the uniqueness and potential of each child--regardless of ability or family structure”

Each child should be viewed as a whole, special person, rich in potentialities, living in a specific family context Schools need to view all children as being "of promise" rather than "at risk" and build on their strengths.

Explaining Your Inclusion Program To Families By: Spencer Salend

Family Involvement Family involvement and support is an important factor in the success of inclusion programs. This article builds on the experiences of Ms. Carr and Ms. Stevens to present guidelines, strategies, and resources educators can use to share information with family members about, and consequently develop support for, their inclusion programs (6) The guidelines in this article for planning, implementing, and evaluating meetings to help family members learn about inclusion programs provide a basic template that teachers and schools can adapt to fit the unique needs of their communities (10)

Steps To Conducting A Meeting With Families: “Rather than assuming that family members understood inclusion programs and were pleased with their child’s placement in an inclusive classroom, they created an opportunity to explain their inclusion programs to families” (7).

Steps To Conducting A Meeting With Families: “Every guest speaker should be able to present inclusion in a positive light, and foster positive attitudes” (9).

Steps To Conducting A Meeting With Families: “Since family involvement and education are long-term processes, the agenda should include follow-up activities and plans for future meetings” (10).

BRIDGES: Connecting With Families To Facilitate And Enhance Involvement By: Mary Sawyer

The Story of Mr. Morrison • Mr. Morrison, a new special education teacher at Brightside Elementary, had on his suit and tie. His breath was fresh; his smile was bright. It was Open House, and Mr. Morrison was anxious to meet the families of the 20 students on his caseload. He had rehearsed greetings, anticipating that remembering everyone’s name would be a challenge. Remembering names was not a problem, though; to his surprise, only three parents came by the resource room that night. Alone in his classroom after the event, Mr. Morrison at first felt defeated. “What am I missing?” • Then it dawned on him, “One size does not fit all when it comes to parent involvement!” Mr. Morrison remembered his mentor’s mantra, reflecting back on discussions he had with Dr. Brown about the obstacles many families face in getting involved. “You see, Jim,” Dr. Brown had pointed out, “parent involvement in the traditional sense is outdated. We, as special educators, need to keep up with the times, to bridge those gaps, so that families can be meaningfully involved at a level that extends beyond what is simply convenient for the school.” He remembered Dr. Brown emphasizing a broad definition of parent involvement, one not restricted to attending school functions. Mr. Morrison knew the importance of working with families, so he resolved that he would devise a plan to facilitate a wide range of involvement.

The Seven Steps To Building BRIDGES: • Step Seven: • Strengthen

Step One: Build • “Meaningful relationships begin with a foundation of trust and understanding. Parents must know they can rely on teachers to advocate for their children and establishing this trust requires teachers to examine and set aside their own biases, cultural norms, and beliefs” (172). • “Teachers can identify two or three specific areas and a few strategies for addressing each. Then, teachers should ask themselves, “How will I know this is working?” For example, a goal might be to improve communication by sending home a monthly newsletter, e-mailing weekly progress reports, and jotting daily notes in student agendas. A communication log may be used to track these efforts, and teachers can solicit parent feedback on the extent to which communication has improved” (173).

Step Two: Recruit • “Choice and voice for all parties are essential features of collaborative partnerships… can create questionnaires electronically using interfaces such as SurveyMonkey, Poll Everywhere, and KwikSurvey. Low-tech alternatives, such as paper-pencil surveys, also work. The important aim is to actively recruit parents’ input and feedback to establish parent buy-in”(173). • “Once parents are on board, involvement efforts can flourish. An initial survey with the letter allows the teacher to gather important information concerning parents’ communication preferences, such as whether they prefer to communicate via text message, e-mail, phone, or in person. Recruiting input in this way when initially building bridges can enable teachers to individualize involvement strategies and increase the probability of success” (174).

Step Three: Individualize • “Each student’s family is unique, and it is important for teachers to individualize parent involvement strategies to accommodate and embrace a wide range of differences. Once teachers have obtained parent input regarding preferred modes of communication and preferred levels and types of involvement, they can take action. Parents who speak English as a second language and family members with special needs may need accommodations, such as translators or sign language interpreters. Although siblings may be helpful in translating information, teachers should be cautioned against relying on young children or young adults to accurately convey information” (174). • “It is imperative that truthful information is received by both the teacher and parents, so teachers may consider seeking translation support from another colleague or community member. When teachers address all of these influencing factors and incorporate the information gathered during Step 2, Recruit, they pave the way for meaningful, ongoing dialogue that serves to promote student growth throughout the school year” (174).

Step Four: Dialogue • “The most important element of a partnership is communication that is ongoing and easily understood by parents in languages and formats that are accessible... Teachers need to be open-minded, demonstrate respect, and listen to parents with an intent to understand their perspectives... One technique teachers can use to promote inclusion among family members is to incorporate high-quality children’s literature…building dialogue around culturally-relevant children’s literature shows parents an appreciation of their input and heritage and motivates students to learn and connect with their families. Active listening can make parents feel comfortable in sharing their perspectives. Many parents enjoy having an opportunity to talk with their children’s teacher, and they value being able to share their input” (174). • “Knowing their parents were going to receive a positive report promoted confidence and pride in the students. Establishing open lines of communication can be especially valuable when partnering with parents of children with disabilities. Teachers may be surprised to discover that many of these parents have never had the opportunity to share their knowledge with teachers and other adults involved in their child’s education. Parents of children with disabilities may perceive these efforts as welcomed opportunities to provide insight concerning their child’s strengths and needs. Texting, e-mailing, and speaking to parents regularly demonstrates a level of respect, and engaging in such dialogue can be an incredibly rewarding experience” (175).

Step Five: Generate • “Teachers can generate ideas and support parents in the identification and implementation of evidence-based practices in the home and community. Generating quick and straightforward strategies to address common parenting and educational issues can lead to better teacher–parent and parent– student relationships. Generating ideas for parents to try may involve developing task analyses of evidence based practices suitable for implementation in home settings. For example, repeated readings is a simple, quick strategy parents could use to help improve their child’s reading fluency. Teachers may create a checklist of the steps involved and share it with parents. Generating useful recommendations is another way for teachers to demonstrate their commitment to supporting parental involvement, and this outreach can promote meaningful in-home interactions” (175).

Step Six: Empower • “A self-monitoring component may help increase student independence. An increased sense of accountability can lead to great improvements across home and school settings. Teachers can also empower parents by conducting trainings, workshops, and webinars on topics of interest and relevance to students’ families. Face-to-face trainings can be offered after school or over the weekend, and teachers can ask parents to select the skills and information to be covered. Another powerful tool is to bring parents together to share their knowledge, hear each other’s questions, benefit from shared experiences, and learn from each another. In addition, teachers should consider taking advantage of technology when empowering parents. There are many ways in which a teacher-created web page could be used to provide parents information and resources” (176).

Step Seven: Strengthen • “Strengthening partnerships with parents requires sustained effort…Acknowledging parents for increased involvement helps motivate them to continue being responsive. Further, teachers should recognize their own efforts and be encouraged by small “victories” along the way. Although holding special events for students and parents requires the teacher to put forth extra effort, it is a worthwhile investment in furthering relationships and creating memories” (177). • “Teachers should involve students in the planning, promotion, and preparation of family events. When orchestrating involvement events, it is imperative for teachers to remember that those parents who are unable to attend are not unconcerned with their child’s education. Given the tremendous challenges that parents of students with disabilities face, special educators must do their best to reinforce and support all levels of involvement” (177).

The BRIDGES model is a flexible framework for teachers to use when implementing strategies to support families in ways that are tailored to their specific needs. When parents, teachers, and students are all meaningfully involved in the special education, outcomes for students with disabilities improve.

THANK YOU FOR LISTENING! I Hope You Enjoyed My Seminar Presentation 

Working With Families