Speaker: Geraldine Graydon, National Parents' Council
When a parent learns that their child has a disability or a chronic illness, they begin a journey that takes them into a life that is nearly always filled with strong emotions, difficult choices and interactions with many different professionals and specialists. Different mindsets and perceptions exist which often get in the way of true partnership between parents and professionals. Parents are driven by an ongoing need for information and services, feelings such as isolation and being alone and the not knowing where to begin their search for information, assistance, understanding, and support haunts many parents (McGill Smith 2003). This paper is written from a personal perspective of a parent who has been through such an unplanned journey.
Most parents react in ways that have been shared by all parents before them on learning that their child may have a disability as they face the enormous challenge of coping with rearing this child. One of the first reactions can be denial: "This can't be happening to me, to my child, to our family."
This can change to anger which may be directed toward the medical personnel who are involved in providing the information about the child's difficulties. Anger can also effect communication between husband and wife and other members of the immediate family. This anger however is triggered by the feelings of grief and inexplicable loss that one does not know how to explain or deal with.
The fear of the unknown is another immediate response, confusion can also mark this traumatic period. Powerlessness to change what is happening is very difficult to accept and the disappointment that a child is not perfect, rejection is also another reaction that a parent can experience.
One of the more serious forms of rejection, and not that uncommon, is a "death wish" for the child. According to McGill Smith (2003), it is a feeling that many parents report at their deepest points of depression. Not all parents go through all of these stages, but it is important to identify all of the potentially problematic feelings that can arise, so that parents know that they are not alone.
This is a time of great adjustment for the parents and the family. Parents will deal with their emotions in a variety of ways but they cannot be expected to be unaffected by them. Bursting into tears, losing one's temper or being super-efficient may all be signs of the same underlying sadness or confusion.
However, it would be dangerous to draw conclusions from these outward expressions of emotion. They do not mean that the parent cannot cope, or is being unrealistic in their exceptions or has failed to come to terms with their child's problems. Just because a meeting is stressful for a parent, it does not mean that they would prefer not to have a meeting. Part of the reason for the high level of stress experienced by parents may be that the meeting is so important to them and their child.
Meetings need to be calm and businesslike, not hurried, and have a clear agenda where appropriate. They need to be seen as part of a continuing pattern for further meetings, and not as one-off decision times. Meetings need to be occasions where the child's abilities and difficulties are discussed honestly and openly in a positive manner, that achieve what they set out to achieve regardless of the emotional roller-coaster that they may seem to involve. This is an area were mindsets play an important role for both the parent and the professional.
For parents, almost any meeting about their child feels like a crisis meeting. Whenever their child's difficulties are discussed, memories of the initial realisation of the child's difficulty may be aroused and the implications for the child's future will be brought to mind. One of the greatest worries for parents is what will happen when their child leaves school.
For the majority of parents of children with disabilities, the role of advocate is continuous. Parents must guide their child's future, both in envisioning the type of services they want for that child and in demanding that those services exist. Parents must be involved in securing services for their child with a disability because they alone have the greatest power to cause change.
Parents are more effective advocates for their children because they know their child best and have nothing to lose. The parents of a child with a disability know about sacrifice and hard choices. Parents have extensive and detailed practical knowledge of their child's strengths, impairments, capacities, learning needs and preferences.
Because parents carry the major responsibility for supporting their child's development, any discussion about intervention must take into account the family's perspective on education and family. Today, families know of the wealth of treatment options which parents in other countries have. Parents must be able to avail of choice in Ireland, but this also means they have difficult decisions to make, so it is vital that the parents have access to information so they have the knowledge and understanding about their child's disability and how it effects that child.
Guilt and pity may cause some parents to become overprotective of their child. Schools can also be overprotective. Over-protectiveness is one of the biggest mistakes one can make in raising a child with a disability.
Overprotected children are dependent. They grow up to be adults who 'can't do things. Parental love operates between the opposing goals of protection and freedom. On one hand, we want to shelter our children from pain, humiliation, and corruption. On the other hand, we want to give them as many choices as possible.
Parents want them to have they same opportunities they themselves had. Parents want their child to be as happy as they can, to go places and to do the things they did.
Many parents at first feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. As a consequence, many parents repress their emotions, especially fathers, because they believe it to be a sign of weakness to let people know how they are feeling. Parents are often saddened by or angry about the way people react to them or their child.
This child is first and foremost a person, whose development may be different from that of other children, but this does not make the child is less valuable, less human, or less important or in less need of love and parenting. Unfortunately, very many professionals forget where the parent is coming from and often will not enable the parents to be parents.
Parents too, can benefit from being part of the early intervention services by being members of the team developing the programme for their child. They can learn skills that may be useful for a long time, skills to help their child learn and develop, as well as skills in decision-making, planning, support to other parents and influencing policy-making in their community.
Parents need respect, they need to have their contribution valued, they need to participate, not merely be involved. It is, after all, the parent who knows the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime.
In educating a child with a disability, the parent and the school have different objectives. A parent wants their child to receive an individualised special education curriculum. As "education providers" for all children, the Department of Education and Science will want an economical, standardised, easy-to-administer, "one-size fits-all" system. Often, a standardised, easy-to-administer, "one-size fits-all" system cannot meet the unique needs of a specific child with a disability.
The relationship between the parents of a child with special educational needs and the school which their child attends has a crucial bearing on the child's educational progress and the effectiveness of any school based action (Blamires, 1997 p-1). Legislation has allocated increasing rights to parents and children in the last few years. This has put demands on even the most literate of parents in negotiating and securing appropriate provision for their child. However, parents can experience many barriers as they try to navigate the special educational maze.
Parents are emotionally involved with their children in a way that professionals, however caring, are not, for example;
Professionals choose their careers, and have a formal training in preparation for their work. They are expected to be knowledgeable and are paid (more or less) accordingly. These are factors which give power to professionals that parents do not have. Parents do not choose to have a child/adult with special needs and they do not have a formal training to prepare them. Their rewards are not monetary, they are intangible. Parents have limited choices and may experience difficulty in gaining the information they need.
Professionals are very powerful, however it is important to bear in mind that with power goes responsibility - first to learn about the child and his/her needs, then to apply that information in a manner that enables learning for the child and participation for the parent.
Professional support cannot be wholly effective unless it stems from the parents' contribution which is integral to intervention and development. Working together is essential. The child gains nothing if the relationship with the professional is one of wrestling for dominance. This partnership will only succeed if we all keep the child central. This, I believe, is one of the many differences between parents and teachers, and one that needs to be acknowledged at the outset. This is where the different mindsets can play an important part in the parent - teacher relationship.
Although considerable progress has been initiated in the wider theoretical recognition of parents as partners in disability issues, barriers still remain in practice, and significant shortcomings and obstacles continue to hinder full parental inclusion in the consultative process and in the development of partnerships.
Parents have a right to make informed decisions in all matters concerning the well-being of their children. Parental input should drive the decision-making process throughout each stage of deliberations.
Most parents are enthusiastic, have total commitment and are motivated to develop their child to his/her full potential. They expect that professionals will approach service delivery with the same commitment and they expect to be part of that process. The entitlements of parents will, therefore, need to be acknowledged. There are many concerns outstanding, one of which is the reported practice whereby decisions are routinely made during the early part of meetings/case conferences before parents are invited to join the health or education teams for the final stages of such meetings.
Parents should be informed of their entitlement to attend all meetings and case conferences concerning their children. They should be encouraged and invited to attend all such meetings where the progress or intervention of their child may be under deliberation. Advance notice of such meetings should be supplied to parents to facilitate the necessary arrangements, so that parents can attend.
Parents must have right of access to all information regarding the case history of their child, covering such matters as educational programmes, psychological testing, individualised assessments and other relevant information (The report of the Dept of Education and Science Task Force on Autism 2001).
Often, teachers adopt a formal approach. This, they believe is in keeping with their professional status when dealing with a parent. This can often be perceived as cold and distant by parents who may be worried about coming into school anyway. The professionals sometimes find the idea of working in partnership with parents threatening. They may fear a loss of control and that it may erode their hard-earned professional status. They worry about exposure of their limitations and the blurring of the boundary lines between the parent and professional (Nolan 2002 p76). There can also be barriers on the parental side due to apathy which can also be a barrier to partnership process. If parents are not interested in working in partnership, or if they are too busy or suffer with depression, it may be very difficult to engage them in this process. One of the problematic areas in which parents and professionals clash most often is in setting realistic expectations, or when the school or doctors tell the parent that their expectations are too high.
Educators need to keep up to date on the research. It is vital that those working with children with disabilities, be they the doctors, advocates, teachers or therapists, understand where research (and theories) are going. This is vital, because views, opinions, and therapies are constantly changing. If the child is to be treated appropriately, professionals need to know the current lines of thinking, because one thing is certain - the parents will. You do not have to agree on them (though that would certainly help), but you need to know them.
There is one additional thing that needs to be said and it's about behaviour that everyone recognises, but nobody likes to acknowledge - that is ego involvement. Stated simply, this is when care givers, educators or parents become too vested in being right rather that in doing right by the child. They allow their egos to inflate their sense of self-importance to the detriment of those in their care. The red flag for unhealthy ego involvement is defensiveness. Where you see it, expect also to see too much self-interest and not enough student interest!
As a parent, I am painfully aware of the ravages of defensiveness. When care givers and educators are defensive, they have closed minds and are self-protective, interpreting constructive input directed toward student learning as criticism directed toward themselves.- LEAVE EGOS AT THE SCHOOL DOOR!
The unplanned journey that parents have to take is fraught with many obstacles, one of which is the different mindsets and perceptions that both parents and professionals hold about each other. Until there is a true understanding of where parents are at and coming from, partnerships will be very difficult to achieve and the many benefits of working in partnership with parents will be lost.
Combining the efforts of parent and professional means that extra skills and knowledge are available to both. Working in partnership encourages and fosters openness between school and home. It values people, and it values the skills and experience that parents can bring to the partnership. Working in partnership with parents also dilutes the barriers and enables understanding of the different mindsets that often exist between school and home. It fosters community involvement, raises awareness and changes attitudes.
There are two main factors that will decide whether our school system moves forward on these issues or not. One is a sincere willingness to work in partnership with parents, and the other is an understanding of what is meant by partnership working. If partnerships are to be developed and mindsets understood, then everyone needs to become committed to it. The future for parent partnership is you and me. We have the power to make change. Even if that change is small, it will make a difference. Parents need professionals, professionals need parents, and the children need us both.