Thursday, April 02, 2009



Autism. Rojo.

There. I said it. The two together. But notice that little period in between? Still like to keep the two separate.

But today is World Autism Awareness Day and mine probably needs a little heightening.

Rojo has many, MANY of the characteristics of those with autism. But because his Behavioral/Developmental pediatrician has repeatedly answered "no" when I've asked him, point blank, if Rojo has autism, I've chosen to believe him.

Funny how it's not a lie if you believe it.

STM and I met with the attorney that did our Wills five years ago. Five years ago we had a pretty standard Will, dividing everything down the middle for the two kids, providing chunks of money (we're worth MUCH more dead, than alive. Much. More.) at certain pre-determined intervals, like college graduation, and all those other things we so naively assumed just FIVE years ago, that our kids would each achieve. We set up guardians until they reached the age of 18. We crossed all the t's and dotted all the i's, we were such good, well-prepared parents.

And so flippin' unaware.

Got a little chocked up when I asked the attorney Tuesday, "What do you know about establishing Special Needs Trusts?" and he said, "I wasn't aware you had a need for one."

Five years ago we weren't aware either.

Almost unforgivable.

But so understandable.

The crying jags and pity parties will have to wait - right now we need to establish a CHAIN of guardians and trustees, to ensure our son is loved, cared and provided for, comfortably, for the rest of what I hope and pray is a long, long life.

And one full of awareness.

11 comments:

She said...

Is there an application process for that Chain of Guardians? Because there should be! I think Rojo should do the interviewing! You will have a waiting list of people to participate in his life long provision!

Wanda said...

What a great idea She has!

You are so very brave, Carrie. I continue to be in awe.

Michelle O'Neil said...

Love.

Tanya @ Teenautism said...

*sigh* I should do a Special Needs Trust too. *hugs*

Alicia (aka Dr. Mom) said...

we just finished our will and trust as well. its so, um, emotionally charged anyway and w/ a special needs child on top of it its... gee, i dont even know how to explain. i probably dont need to. its wierd bc a parent never wants to outlive any of their children, but sometimes i worry about my daughter if i die first. thats the hardest thing... to think it might be better for your child if THEY go first - against all mothering instincts. thats how autism/special needs affects a heart. it makes it love in ways you never dreamed and feel conflicted about things you never thought you'd face.

ok, enough of that deep-ness for now. time for some chamomile tea and mindless tv....

Anonymous said...

I'm humbled.

Jerri said...

It's a tough realization. And you do have to just move forward and get it done, maybe a short, small pity party early one morning before anyone else wakes up. Put on some jammin' music and dance. And don't forget--it's your party, you can cry if you want to.

Me said...

(we're worth MUCH more dead, than alive. Much. More.) - only monetarily because a mom and dad are priceless

kario said...

Love that the attorney didn't know you needed a special needs trust. But in the end, what you're doing is just extending the care and conscientious parenting you've been committed to all along with these terrific children you and STM have. You and STM are truly the gifts that keep on giving ;-)

Amber said...

He will be happy, and he will be loved.

:)

Deb Shucka said...

It's okay that you didn't know until now. You've been too busy being a loving mom. Love you.