Labels abound, some of them distasteful, some inaccurate, some just in vogue, others useful to understanding and planning. I am speaking about children who have substantial special needs.
They may be diagnosed with complex disorders such as Autism, Asperger’s, Pervasive Developmental Disorders, Bipolar Disorder, Tourette’s, or Mental Retardation. All are challenging to identify reliably, and even more challenging to treat effectively. We can add the physical disabilities of blindness, deafness, and a multitude of serious medical disorders that strike children and significantly limit their ability to function.
Each of these disorders has books, websites, and national organizations devoted to them. Parents often know more about the specific disorder than any individual professional involved in treating the child because they devote hours to researching out all available information. The Internet has made much more available including the ability to contact other parents with similar concerns.
Yet, as I recently listened to a group of such parents share their pain and frustration, I could hear some common issues being expressed repeatedly: the need for parental support systems, the reality that in many situations nothing really works to resolve the challenges their children present, the lack of social opportunities for their children, the impact on marriage, the impact on siblings, and fears about the future.
Parent Support Groups
As I sat and listened to these parents share their painful stories, I felt particularly powerless. I had no magic solutions and rarely an idea that they hadn’t already heard from some other professional. Yet, as the meeting drew to a close they were so thankful! The process of sharing their struggles face-to-face with other parents who understood them best made a difference. Some actually exchanged phone numbers and planned to meet again.
The main plea was the need to have ongoing support groups. There was talk about the lack of respite from the 24/7 challenge of caring for these children. Finding someone to watch their child for a few hours so they could have time for personal, marital, or family activities was a universal challenge. The typical sitter lacks the skills and even if one lives near family, they too often lack the understanding or patience required to help. In fact extended family non-support was a key issue. Too often these parents are criticized by their own extended family for not being able to better manage the behavior of their child with severe special needs. The frequent result is avoiding attending family and community events.
These parents need a level of support that is difficult to give if you haven’t been in their shoes. The understanding that was shared within the group was very powerful. It was especially helpful because these parents are very isolated and despite information that may be available, still end up feeling as if their struggles are unique and represent their failures as parents.
But the emotional support and social connection was only part of the group’s value. These parents knew so much that they were terrific resources about the latest information as well as being able to share what strategies or services had proven helpful with their child. So there was a practical, informational aspect to the value of the group.
It was obvious in reflecting on this meeting that more community agencies need to commit to providing an opportunity for these focused parent support groups. Online chat rooms help but talking to other parents in a real room, especially parents who live in the area and can become a true personal connection, is essential to the coping ability of these parents.
Impact on Family
Children with severe special needs drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage plus the frequent problem of parents disagreeing on what needs to be done for the child.
Another source of tension is that often one parent is more effective in managing the difficult behaviors. The reduced couple’s time is especially important because there is more that needs to be discussed and dealt with including the feelings of grief and disappointment that sometimes never get processed. The ability to learn to enjoy the positive aspects of the child and to take a more spiritual perspective about what all family members gain from having to address these challenges can only take place after having grieved the loss of what the parents had expected from that child at birth.
Sibling issues need attention. Parents and professionals alike often lose sight of the need to help siblings understand the problem that is affecting their brother or sister. Then there is the challenge of trying to reduce the jealousy that results when so much attention is focused on one child as well as the frequent limitations on doing common family activities. It is clear that siblings need an opportunity to voice their questions, concerns, and feelings.
A particularly important issue is helping them identify their negative feelings as normal and reduce the guilt that often complicates their behavior within the family and toward their sibling. Once again we are talking about the need for support groups. To learn that they are not alone in their situations and in their feelings is critical to a healthy attitude and the ability to cope. Communities need to provide these opportunities.
Some of these disorders are defined by problems in making social connections. Others just present challenges that limit a child’s participation in typical social experiences resulting in the limited development of social skills. Here we often get into a philosophical struggle. Getting an education takes up much of the focus of all children.
In recent years the concept of inclusion has become required. This means that a child with severe special needs should be given whatever supports necessary in order to remain in the mainstream of regular education. The most extreme form of this is when an aide is assigned to sit with a child in all (or most) classes to help the child participate to whatever degree is possible. This is a fairly common plan for many children with severe special needs.
… It is not helpful to these children over time…
While it seems like a good idea with very young children, perhaps up to third grade, it is my opinion that it is not helpful to these children over time in a few critical aspects. I think it serves to underscore their differences rather than add to a sense of fitting in, that it quickly moves from limited social acceptance to mere tolerance and social exclusion after school, and that classroom teachers lack the specialized knowledge required to effectively teach these children. I believe the alternative of having these children attend classrooms or schools designed for children with their special needs in mind is much more effective.
Obviously everything depends upon the individual child and it may be that being in separate programs is something that is done for a limited time until their skills might allow for inclusion. But the value of these specialized programs is that the child fits in, has a level field on which to participate, is surrounded by staff with the required training, and the education process is not constantly being adjusted downward for them but is designed to fit their needs just like everyone else in the class.
Specialized programs also provide opportunities for those parent and sibling support groups. The strengths that each of these children possess will have a greater chance to be recognized, expressed, and built upon. Public education struggles to do this for children without special needs! Over the years I have repeatedly been impressed by the changes possible when these children attend a school that is totally geared to their special needs.
Fear of the Future
A clear message from these parents is what will happen to my child as an adult and, especially, what will happen to my adult child when we aren’t here to provide the care and guidance needed. A key part of the answer to that concern is reflected in increased development of group homes for adults with special needs. As always the problem is the lack of sufficient resources. We typically look for government to step in and help in situations like these but that never is sufficient to resolve the needs. Private enterprise is also expanding in this area and that will help.
But once again it is other segments of the community that need to step up and help fill the void, especially religious and community organizations. Churches, synagogues, community centers, and fraternal organizations need to address the needs of their neighbors and commit resources to providing housing and recreational programs.
These institutions have a permanence that is needed to insure an ongoing caretaking role. Of course, siblings, if present and if strong family bonds have been forged over the years, can be a key resource. Plus parents need to address the long term issues by working with accountants, lawyers, social service agencies and other specialists who will help them to develop formal plans to address future needs.
It Takes a Community
This overused phrase really belongs here. Virtually every key issue is about isolation, about families and the children with special needs finding places where they are welcomed and are given the support they need. Along the way we hope there will be new forms of treatments that will enhance the mental, emotional, and social growth of these children. In the meantime, communities need to make it easier for these families to feel that others care and that they really do belong despite having a child whom is different in some significant way.