Thursday, April 11, 2013
Jodi and I recently had a remarkable opportunity as members of the Church of Jesus Christ of Latter-Day Saints. We were contacted to participate in a focus group with the general presidency of the Primary on how to better serve children with disabilities, handicaps, and special needs.
For you non-mormons, let me clarify. In the the Mormon church, the “Primary” is the auxiliary that helps teach the children’s classes during the time of the Sunday meetings when the adults and the youth (teenagers) have their own Sunday School and other classes. I went through it myself as a child, and at various times in my adult life, I’ve been a primary class teacher.
So, this was an initiative by the “General President” of the Primary. That means the lady in the office building in Salt Lake who is in charge of the Primary program over the whole world. That’s right.... Her calling is to be responsible for the religious education of every Mormon child in the world. It’s a big job. She has been known to speak from time to time in the Mormon Church’s General Conference, giving advice and inspiration to the world’s parents.
So, I was particularly touched to hear that she had contacted a number of parents of special needs children, and some general primary leaders from some individual wards, to participate in a focus group so they could learn how to better serve the special needs children in the world’s congregations.
It was a wonderful experience to be there with her and her two counselors, and to share our experiences. My only frustration with it was that our session only lasted an hour.
There were many parents there that shared wonderful and frustrating experiences. Much of our own experiences in church with Jacob have been wonderful. We actually have a very supportive ward. Some teachers and leaders have been better than others, of course, but by and large, it’s been great. They’ve really tried to include Jake as best they can.
Apparently, the Primary Presidency is working on an addition to the Church website, in the Primary wing, to aid people in working with children with handicaps, disabilities, and other special health-care needs, and their families. We were asked how to make it more useful, and more accessible. In the process, I also learned that there are a lot of resources available to wards and families at the main church website, at http://disability.lds.org. I didn’t know, for example, that a ward or stake can actually call a disability specialist as part of their ward or stake roster.
The biggest contribution that a local ward can make to a child’s well-being is to talk with the parent and to spend time getting to know the child. Every child is different, and a handicapped or special needs child moreso. What works with one autistic child will not work with another, even though they both carry the same diagnosis. Cerebral Palsy looks different in every child who has it, and with Cystic Fibrosis, like Jake has, it gets even more complicated.
In the end, I was just left with an overwhelming feeling of gratitude that the Church, at such a high level, recognizes the needs of families like ours, and kids like Jake, and is trying to serve them. Really, the best way for them to serve us is more on a local level, but often local leaders are not as aware of what to do. Often top-down instructions and resources are a great way to go.
It was also kinda funny to learn that the way the ladies talk in conference is also how they talk in real life!