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.