Community Building-the Cure for Isolation

Being a parent is a complicated business. It contains equal doses of love and guilt with some pride, hope, frustration and confusion thrown in. Parents of children with disabilities may feel these emotions more acutely than “typical” parents, and the feelings of uncertainty and powerlessness which they often live with can be very stressful. They can gradually become separated from the ordinary experiences of parenting because their child needs something beyond in order to get the important work of childhood (walking, speaking, socializing, learning in school and becoming independent) accomplished. In some situations, parents do not have the time or money to take their child to the park, have play dates, go to the zoo, throw a party, or take a vacation because their ability to work and play is impacted by the extraordinary extent of their parenting responsibilities, and the time spent attending high cost, specialized therapies which health insurance may not pay for.

As our society has become more mobile, families have become separated many by miles of highway and parents find themselves a long way from their natural support network of parents, brothers and sisters, and old family friends. I also hear parents say that some family members and old friends seem uncomfortable around their child, and that over time they find they have lost touch with a lot of precious people, they can’t really say how it happened.

One parent said: "Our world has become very small".

The preamble to IDEA 2004 tells us that:

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society….”

However, it seems that our society may not be as comfortable with disability as many of us would wish. When a parent feels that someone is not comfortable around their child, no matter how old a friend, there is likely to come a time when the relationship is no longer fulfilling for either person and it will probably fade. Parents whose finances, energy and time are stretched to the limit may find they must often turn down invitations from friends and family, so they just don’t spend the kind of time together as they used to. Sometimes parents feel more at ease with people who are part of the service system such as therapists and teachers than with family and friends, and they may spend a good deal more time with them too. This can begin to feel like a whole separate community, one which is comfortable with disability but isolated from the larger community.

Our lives, and those of our children, are so enriched by having deep and loving relationships with other people. We are social creatures and not only are we happier when we have a circle of family and friends, we also learn so much from each other. There will be people with whom you lose touch, because of distance in miles or distance in understanding, but there are people who have a commitment to you and your children that is unshakeable. There is also the possibility of discovering some untapped potential in your community, and if you can find ways to make new connections for yourselves and your children, your circle could grow rather than shrink. But no parent can do this alone.

The first, and perhaps hardest, step is to ask those committed friends and family who have stuck by you, for support. Not just to help directly with child care, but to help find and make connections into the community and start building a network for you and your child. People who know and care about you can help you discover more about your child’s gifts and interests. If they are not as isolated as you, they know where those gifs and interests might be appreciated outside the disability community, and they may know people who are trustworthy, welcoming and open hearted and by whom you and your child are not likely to feel rejected. John McKnight guides us to look for places where:

• People come together by consent rather than by control;

• Relationships are based on affiliation and shared interest, rather than exchange;

• People are always identifying, inviting and mobilizing one another’s gifts;

• The culture expresses itself in the form of stories, rather than data;

• And “we hear people singing” because people are making music rather than consuming music, making art rather than consuming art.

It truly does take a village, but you don’t have to build one yourself, you just need to find the courage to ask for help. Deep down you probably already know who will say “Yes, yes!”, and if you look closely those who know and care about you and your child may just be waiting for an invitation.

For more information about community building, go to:;
http://www.communityworks.info  or http://www.elpnet.net/

For more information about IDEA 2004 go to: http://idea.ed.gov/explore/home