Newsletter – February, 1999

**Companion Resources Newsletter**

edited by Paul D. Leichty

Volume 1, No. 2 February 1999

Thanks to all of you who have subscribed to this budding newsletter. I look forward to your comments and suggestions. Write to me at CResourc@aol.com. For now, I hope you find something useful in this edition.

Why “Companion Resources”?

We live in a world of need. The newspaper headlines nearly numb us with daily stories which tell of human need. In my years in urban ministry, I discovered a more personal face to that need. The ex-mental patient, the homeless mother and children, the drug addict, the agitated group home resident are just some of that starker examples of the many needs that are a part of the lives of all of us.

As a Christian, I am convinced that God has given the human community many resources to meet those needs. We are needy people precisely so that we will come to depend upon God and each other. In fact, we have been assured by Jesus that our real needs will be met if we ask.

I am convinced that the most important resource we have been given for meeting our needs is simply other people. Each person has unique gifts to give to others. Each person has something to give to the community as a whole. So it is in community where our needs can be met.

Sometimes, our needs are very general and there are naturally many persons around us who can meet those needs. At other times, we find ourselves with very specialized needs. At those times, we struggle to find persons who can share a common experience with us, who can understand enough to know what it is we need and who or how our needs can be met.

Communication is the key to getting in touch with other people and the gifts they represent. In our day, the technology of telephones and computers make it possible for us to build specialized communities of support and resourcing that were in former times very difficult if not impossible.

Computer technology gives us the ability to communicate and build broader and yet more specialized communities of mutual resourcing.

What is your need? What do you have to give? That is why this newsletter exists. It is my hope that through Companion Resources, I can help you unleash your potential to build communities of support and encouragement. I solicit your ideas to help make this possible. Feel free to suggest topics or share experiences in which your needs have been met through the resources of the community. Send your material to me at info@companionresources.org.

A Bit of Our Family Journey

It’s hard to believe that nine years ago, I did not even know what fragile X syndrome was. Nancy and I had simply resigned ourselves to the fact that we would probably never know a specific cause for the disabilities of our son, Nathan.

Yet, beginning with a visit to a new pediatrician, all of that changed. Once a blood test confirmed that Nathan had fragile X syndrome, we started reading all that we could about it. We found precious little.

We were amazed at how little even the “experts” knew. Out of the entire school devoted to children with severe learning disabilities, the staff knew of not one other diagnosis of fragile X syndrome. We knew of no one else outside of our family who had this condition. As we sought out communities of support, we were put in touch with the staff at another private school and with a new program at a big city hospital. There, we learned more, but it was a fleeting experience. One or two conversations or visits and we had our booklet or our report and that was it. We were still alone to respond to our child with special needs.

After moving to Fort Wayne, we finally discovered another family affected by fragile X syndrome who were also searching for support. Eventually, we have found two other families and now we meet semi-regularly to form a support group. We have tried to reach out to others, but with very limited results.

However, through the use of a computer, we were put in touch with scores of families with similar needs and experiences through a fragile X mailing list. This list was an overwhelming source of inspiration, encouragement, and the latest information. Partially as a result of being on the list, we have now attended two International Fragile X Conferences. There we met many of the people who were conversing online as well as many other persons with stories of struggle and encouragement.

Now the online conversation is even larger, so large, in fact, that we do not even make an attempt anymore to absorb it all. It is enough to know that the explosion of both knowledge and human support is always there and accessible whenever we need it. And if we are in a position to make an encouraging contribution to someone else’s journey, we do it.

The computer is a tool in that process. Combined with other human contacts, with written newsletters, and with a growing awareness in the wider community, we are able to both find support for our own needs and to make a contribution to the encouragement of younger families. This is an example of “People using Technology building Community.”

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To find out more about fragile X syndrome, visit the Companion Resources web site at https://companionresources.org/Learning/Fragile_X and explore the links there. Perhaps there is some special need that you would like more information about. Send me a note at info@companionresources.org and let me know!

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That’s all for this edition! I welcome your comments, questions, and stories. Because this is a send only list, you will not be able to simply hit your “Reply” button, but will need to send your message to the following address:

info@companionresources.org

Blessings on your journey!

Paul D. Leichty

Companion Resources

info@companionresources.org

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