No One Tells You

A first child turning 18 is an exciting time in a parent’s life, right?

A time when the child you grew within you reaches the age of legal adulthood.

It seems like those 18 years went by in a blink of an eye.

A child you raised, guided, and encouraged throughout their childhood actually turned out pretty darn awesome. Your role in their life is different now.

The little birdie is getting ready to leave the nest. They are preparing to go out on their own and conquer the world.

Your job is less hands on.

You can take a deep breath and congratulate your spouse for having survived the teenage years.

But what if your situation isn’t like that?

What if your beautiful child has an intellectual deficit that prevents her from taking the world by storm?

What if your reality looks totally different than that of your friend and her son?  What are you supposed to do then?

No one seems to talk about what to do when turning 18 looks very different.

When you have a child that has been on this earth for 18 years, but has a brain that is 5 or 6. When your baby turning 18 is confusing and scary.

A few months before her birthday you start hearing the word guardianship.

You’ve heard the word, but only mentioned as and afterthought.

No one stops to give details about it.  The tone used is almost one of shame, like you need to do it, but you shouldn’t really talk about the how and why.

There are piles and piles of paperwork to fill out, countless phone calls to make.

No one explains to you how to find a lawyer, file the paperwork, and appear before the judge to get guardianship for your child.

You have to stand there and explain why she looks like everyone else, but can’t successfully make her own legal decisions.

You need to work with local, state and federal programs, and the high school, to try to make sure your child has something to do with her time after she graduates high school.

You need to navigate through programs and agencies you have never heard of before and spend hour after hour in meetings sharing copies of her school records and evaluations so often you just carry copies along with you.

You can’t forget to apply for SSI, so she can have some income to take care of her when and if you can’t.

This is a whole new set of paperwork, more copies of the same paperwork everyone else wants and a several month wait to see if they want even more documentation.

Another thing no one talks about.  How having an eternal kindergartner is both fun, and scary as all get out.

You GET to have a kindergartner forever. The wonder of discovering something new every day.

The sheer joy over the little things like a dollar store toy or the Easter Bunny coming. But you also HAVE to have a kindergartner forever.

Traveling alone together with your spouse, or running to the grocery store will always be a little more difficult.

You desperately wish there was one set of paperwork and that you could have one huge meeting with everyone in attendance.  You can recite the answers to questions before they even finish asking them.

You are asked the same question over and over, again and again, and AGAIN.

Turning 18 for your special child looks way different than the way you imagined.

Way different than it did for you, and way different than most people.

Still, when that magical day arrives – take the time to take a deep breath, pat yourself on the back, and congratulate you, and them, on a job well done.

A day you may have never thought was coming – or that came way too fast – is here, ready or not.

Celebrate this milestone with all the pomp and circumstance you can muster. Then jump back in, and keep on being the amazing parent you are.

Written by, Kathleen Rolloff

My name is Kathleen.  I have an 18 year old daughter with severe special needs due to meningitis as a 6 week old.  I also have a 13 year old with ADHD. Things are never dull around here and I wouldn’t have it any other way!

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.