Our Non-Speaking Child’s Future: A Letter to His Caregiver

“We should start planning for his future?”

This is what my husband often says, but neither of us are sure where exactly to start.

Should we set up a special needs account?

Who will be in charge of his care?

Where will he live?

Who will explain to him what’s going on and how?

I keep telling myself that we don’t need to think about this for a long time, but the reality is, we do.

The fact of the matter is, something can happen to any of us tomorrow. This is hard to think about with either of our children, but our non-speaking child with special needs will be left especially vulnerable.

I don’t have all of the answers yet, but for now, I will leave this poem as a reminder for myself of how important it is to continue to advocate and plan for his future.

Dear future caregiver,

As I sit and write this letter, I realize I may not be here forever.

There is always a chance I may be gone tomorrow. The thought of that brings me so much sorrow.

I have two children; one will likely grow up to marry, have children, and a career. The other, I am not so sure, and because of this, I fear.

Thank you for your love and for helping him grow. There are so many things that he can’t say I would like you to know.

If there is a case when I am not there, please be patient, as he may not be able to tell you when or where.

He can show you by pointing or gesturing… And when he wants something, he will keep on pestering.

When he gets upset, he may scream and cry. It may not always be clear why.

You can direct him to his speech device and ask him what he thinks. He may tell you if he wants to eat or drink.

Sensory is very important to him; he has a section for that.

He may ask you for tickles, squeezes, or to clap your hands… He is really good at that.

Please be aware he may not always show you what he knows. But when you least expect it, his true colors will show.

He actually knows his colors and superheroes too. He also likes to climb and run, so watch out or he will outsmart you!

Thank you for taking the time to read and understand.

Please love him unconditionally, and don’t forget to hold his hand.

Love, Mom & Dad

Written by Trista Metz of  The Legend of Lincoln: Our Autism Journey