The special needs community is truly a community. Community with shared experiences, shared values, and shared understanding of what it means to have and be responsible and to love a child with special needs. Each member of the community may have their own unique details, but the community understands and can support each other with a common voice of having been there in one way or another.
Writing a will and preparing a trust for your special needs child is a caring, compassionate, and smart way to help your family transition to life without you, whenever that time comes. There is enormous value in doing these things.
But what if the transition that comes first is not life without you, but life without your child?
I am a member of a large, online parent group whose members all have children with extensive medical needs. I have had the privilege of watching many times as a parent shares with us the decline and impending death of their child. I have felt the warm rush of care and support from the community surround this parent as they help their child prepare for the passing, while the community helps the parent prepare for the passing. Many of the members have lost their own children, others simply understand, because they know it could as easily be their child.
Grief over a death is much harder than people think before they experience it. And while it can make a person feel very alone, the experience of grieving is truly universal, and the support of a community can be invaluable.
In central Texas, the wonderful organzation The Christi Center provides grief support of all kinds. They also have a page of resources and a list of similar grief support groups in other states. They also provide help for friends of family of a person who is grieving, with suggestions for what to say and things to do.
Life is not something we do alone. Grieving is part of life, and should not be done alone, either.