My wife Bev and I have had 25 years of experience in walking with our daughter Nicole, who lives with severe, multiple disabilities. Thanks to Bev's forward thinking, we've prayed, and sought advice, and read books and magazines so that we could keep looking ahead to do what's best for Nicole.
I ran across this brief guide today that looks like it could be very helpful: Charting the Life Course: A Guide for Individuals, Families, and Professionals. Charting the Life Course uses a matrix of six life stages: 1) Wondering if Meeting Milestones, 2) Getting the Diagnosis, 3) Everyday Life during the School Years, 4) Realizing School is Almost Over, 5) Living Adult Life, 6) Preparing for End of Life. Use these six stages in life, the guide then gives questions one needs to ask regarding various areas of life during each of these stages: Daily Life, Community Life, Safety and Security, Services and Supports, Healthy Living, and more.
What have you found helpful as you have prepared for the future of your child?
Comments
I wonder if the biggest issue sometimes is whether parents can find respite sometimes for their children when they need a break from constant daily care. Also what will happen to the child when the parents are too old or incapable of caring for them. I would suggest that churches or classis consider finding a way to provide an assisted living residence or facility that can provide a place for these situations. It might be particularly nice if such a facility is near or adjacent to the church, so that visiting and attending church is made much easier. Just a thought.
John, Good thoughts. Westview CRC in Grand Rapids, Michigan, no longer used their parsonage for pastor housing. In line with what you suggest, that house is now a group home for several adults with intellectual disabilities! Exciting to see this kind of creativity to meet an important need and to engage in a significant ministry opportunity.
Although it is important for all of us to prepare for our future, particularly if we are middle-aged and beyond, it is especially important to plan for the future of our dependent children. It was this kind of thinking by CRC members in the Edmonton, AB. area who had children with developmental disabilities that led to the creation of Rehoboth Christian Ministries over 30 years ago. It provides residential, respite, vocational, and in-home services with a Christian focus in various centers in Alberta. It isn't easy to start a ministry like this, but Rehoboth is now a provincially accredited, highly regarded service provider. Anyone else want to tackle this in their community? (For more information and contact info for Rehoboth, see the online version of the Disability Handbook at the Disability Concerns link at crcna.org.)
I love what John said: "I would suggest that churches or classis consider finding a way to provide an assisted living residence or facility that can provide a place for these situations. It might be particularly nice if such a facility is near or adjacent to the church, so that visiting and attending church is made much easier. Just a thought." Although, I would like to see this "thought" become a reality. How do we make something like this happen? We live in the Grand Rapids area. Would Classis East consider something like this? There is such a need for a facility like this.
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