Try a Conga line

A special needs trust almost always comes with a suggestion to write a “letter of intent” or “letter of instruction,” or some similar language.  The letter is meant to be information, instruction, and guidance for trustees and others who may need information on how to care for your child, how to use the money left for him or her, and in general how to manage their life.

It sounds easy – “write down all the information anyone would need to know about how to care for your child” – and yet, most families never get around to it, or do an incomplete job.

When your kids were little, you probably left some instructions for babysitters.  Maybe a few phone numbers, maybe you explained what activities would be good to do with them, or how to get them to stay in bed.  If you have special needs kids, you might have also left more specific medical instructions.  But you wouldn’t have left the house without giving your babysitter at least some information about how to take care of your child while you were gone.

And yet, parents of grown special needs children frequently “leave the house,” as it were, without providing information on how to care for their grown child.  It’s hard to get around to it, we feel like it needs to be perfect, we put it off until there’s time to gather all the information . . . and it sits uncompleted on the desk for years.

What finally got me to actually start writing things down was the Conga line.  At one point my son was often very aggressive, and the only thing that would get him safely in his room to calm down was to start a Conga line.  His autism and OCD made it impossible for him not to join the line, and he would dutifully Conga himself right into his bedroom, where we could keep him and everyone else safe until the aggression had passed.

And one day it occurred to me that if my husband and myself dropped dead, no one would know that was the way to handle his aggression.  And I would bet money that no behavior specialist would have come up with that suggestion.  But knowing this information was vitally important to his and others’ safety.

So I started writing.  Over the course of a few months, I compiled a pretty complete instruction manual for my son.

The Conga Line is important in my family.  What’s important in your family?



If you need help getting your instruction manual written down, why not use our Workbook?  Just answer the questions and fill in the charts, it gets you started and keeps you moving.