Transitioning to Adulthood...NOT for the Faint-Hearted

Life in Riley World can be a hard thing to explain to others. Last week I was out for dinner and a movie with some girlfriends. I was bemoaning how stressed out I’d been feeling lately.

Today a friend forwarded me this article from our local newspaper. “It’s way too hard for families.”: Parents of disabled children fight for support.

The timing of this article was well...timely. 

When Riley was still in school, I kept hearing the stories. “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”

Surely “they” were wrong. There had to be something!  Nobody wants to believe "there is nothing out there".  I sure didn't. 

Parents of younger special needs children can often be heard saying “I can never die.” The worry of who will care for their children; who will advocate for their children; and where their children will end up can be daunting for parents.  

As special needs parents age, thoughts can turn to “I hope I can live just one day longer than my child.”

Unthinkable, right?? 

Sadly, if you have an adult-child who will more than likely require support for the rest of their lives…whether admitted or not, the thought crosses your mind.    

Riley will be turning 23 this June. Since he turned 19 we have been one of the families in this story. Applying for services/funding. Turned down. Advocating. Creating a new program with other families. Re-applying for services/funding. Turned down again. Tired. SO tired. A vicious and exhausting circle.

For the first time since Riley transitioned to “adulthood”, I am feeling beyond discouraged and frustrated. I am disheartened. It’s not a good place. It’s not productive. It’s not healthy.  

Not to worry. I have an appointment with my GP about upping my “happy” pills. When in doubt…up the meds.  
I kid.  Maybe.  ;) 

Million Dollar Smile....and it only cost me $10

One would think after almost 18 years I would know what makes Riley World tick. All the subtleties. Every little nuance. One would think.

And then…BAM!  Right in the face….a reality check.

One of the things on Riley’s Christmas list was “The Grinch CD.”

Every time I saw him, he would specify “The Grinch. Just the disc.” Of course I knew what he meant. Duh!!  He wanted “How the Grinch Stole Christmas” DVD! Just like all the others on his list. Why he specifically kept saying “Just the disc” for that one and only item…surely slip of the tongue.

And then…

Last week he came downstairs with this in hand…

*25W lightbulb turns on*

Me:  OHHHHHH...You wanted the CD!
R:  …....
*I’m sure he was thinking…ummmm…yea!*
Me:  I’m sorry.
R:  That’s okay!  
Me:  You wanted the AUDIO CD. You wanted the one that tells the story.
R:  *relieved voice*  Ohhhhhh-kay.
Me:  I made a mistake. Sorry about that.
R:  Did you make a mistake??  You made a mistake. That’s ok.

So last Friday we went to try and ummmmm…rectify MY mistake.

We looked in all the shelves. No luck. I told Riley we could buy it online but first we would ask at the front desk. After looking it up, the young man said he would go check in the back.  

I didn’t have a lot of hope but we waited patiently.

And then….

R ...“HE FOUND IT!!”

I hadn’t even noticed he had come out. I was doing everything I could, short of jumping over the aisle, to see if he had anything in hand.

Sure enough…

As we waited to pay, R kept repeating “HE FOUND IT! Now it’s perfect!” 

R's not one for pics...but I asked him to show me his "Happy Face"