“God, Sex, and Disabilities” was the title of the book I was pushing with a publisher over lunch. He laughed at the name and said “It’s catchy, but you need to be more direct. People want to know specifically what to do and how to do it. They want lists.” While I believe we are capable of deeper conversation than simply listing items, he did have a good point.
I have met thousands of families and people with disabilities over the years. While each one is unique, with their own story, goals, and needs, there are a few things I’ve discovered which can make the disability journey much easier to travel. Over the next few months, dA Bugle will dedicate an issue to each one individually, providing an in-depth perspective to consider. To kick it off, here is a quick summary of what we’ll discuss. Please let me know if some of these topics are of greater interest to you, and if there is something specific you would like to discuss, and we can dive even deeper.
If you’re the parent or ally of a child with disabilities, these 10 things are a must:
1. Get help at home. Martyrdom is not sexy and will destroy your family.
2. Get on the Medicaid-waiver waiting lists. They are over ten years long and may provide options later that you may need.
3. Take advantage of all community-sponsored programs who want to help you. God has given you a special gift and it’s your moral obligation to share your gift with as many people as possible.
4. Find a church home which welcomes your unique family. You and your children need nourishment in God’s Word regardless of IQ or behavior (yours or your kids).
5. Get involved. Organizations need your skills and talents and you will develop vital connections for your family.
6. Get to know those who do, not those who talk. The most important people in education are the teachers and principal, not the district knuckleheads. For disability services, it’s the local providers and state agency bureaucrats.
7. Work crisis to your advantage. When you need to get things done, abandon rational discussion and give people a crisis to solve. Laying an eminent disaster at the feet of an elected official or agency bureaucrat generates more action than any long-term plan will ever yield.
8. Every person and situation is unique, as what worked for one family may not work for yours. You will need to chart your own path.
9. Planning requires flexibility. All of us continue to evolve and our needs change constantly. For parents trying to plan for a child after they’re gone, respect the needs of future caregivers. Mandates from the grave never work.
10. Thank God everyday.
Again, we’ll be diving into each one in-depth over the next few months. As always, please let me know your thoughts!