Be whatever you want to be
Go wherever you need to go
And when it all seems like a mistake
Take whatever you need to take
Leave the rest for my own sake

I will always

Go beside you,

You will always
Understand it

And now, it's all the same to me
So be whatever you want to be
Go wherever you need to go
And when there's nothing left behind
Taken whatever you needed to
And leave it all into my mind

I will always
Go beside you,
You will always
Understand it

As he’d done in the past,  Ronan choose a band I liked.  Then he played something seemingly out of the blue.  I’d never played the songs around him, but the particular lyrics of the ones he’d chosen?  Painful yet poignant.  And based on what was going on in the moment?  They couldn’t be more perfect.

I had been working feverishly to get services for Ronan at the time.  He’d had access to some, but I’d discovered we were eligible for a different kind: respite.  Oh, how our family could use some respite!  There was one minor problem.  Even though Ronan more than qualified, I couldn’t find anyone to help us gain access to the program so that we could start it.  

After making half a dozen phone calls, I was still getting nowhere.  One call lead to another.  One clueless representative passed me onto another clueless representative.  No one knew what I was talking about even though their website boasted that the services I was looking for were readily available!  I kept at it.  Making more calls in the early afternoons, sometimes with Ronan in earshot, I called local offices.  I called state offices.  I called support group offices.  All I needed was just one live human being to give me the information to get us going.  Apparently, that was too much to ask. 

General information was easy to find online, but the specific information that pertained to our unique needs seemed to be locked in a box in an unattended room at the far end of a basement that never saw the light of day.  After all the calls and unanswered emails, understandably, my frustration level rose.  I should’ve kept my thoughts to myself, but I’m sure I muttered some unkind words under my breath after each failed attempt to get this extra help that we supposedly had at our fingertips. 

Keeping to himself, as he usually does, Ronan quietly played either alongside me or was in the next room over while I hunted down information.  I have no doubt that Ronan picked up on the fact that the endless phone calls that brought more questions than answers was a tad bit frustrating for me.  Add that with each call I made, even if it wasn’t to the right office or person, I started with telling his story – Hi, I’m calling on behalf of my son, Ronan.  He has autism.  He can’t speak.  He has seizures.  He can’t use the toilet on his own.  He’s severely developmentally delayed…  While Ronan made no indication that he was listening, I know he was.  Hearing that no, he couldn’t do A, B, or C and that no, he may never do X, Y, or Z, probably didn’t boost his spirits.  Repeating it as many times as I had to sure didn’t boost mine.  

Not too long after Ronan found and played that song, I sent this message to the one live human being who could finally help me get that respite:

It's been awhile, but here's a happy update for you--we got services!  After all the phone calls, refilled forms, waiting, waiting and waiting, and also making sure I spoke to the right people, Ronan got his letter of approval this week.  

Our case worker was less than helpful in telling me where I can go to find out what agencies we can begin using though.  I will probably have to wait until next week to get some answers from her.  In the meantime, I just wanted to say thank you again for your help.  The process hast been difficult, but you’ve made dealing with it a lot easier.

That woman worked for an agency, but she was more than just any paid employee.  She also happened to be a parent of an adult with severe disabilities.  Knowing personally just how difficult navigating the system can be, she was thrilled to hear our good news.  I haven’t needed her help in the last three years, but I saved that woman’s contact information just in case I ever needed it again.  I just might.  Next week, we are revisiting a process I’ve grown to hate. 

As much as I had hoped we would never have to consider this, I’m meeting with someone who helps families secure long-term services for their child after their child ages out.  Because Ronan is still very much developmentally delayed, we cannot avoid planning for his future adult care.  To wait any longer may jeopardize potential placements and potential benefits that he may qualify. 

While I’m very grateful that I will get information that should steer us in the right direction at our upcoming meeting, I’m not looking forward to going through what typically has been a long, painful process.  I try to keep them in check throughout that process, but emotions can and still do run high when it comes to getting Ronan the help he needs.  Maybe I’ll put that song on repeat the morning that Ronan and I head out.  It’s a good song.  It’s one that Ronan made sure I heard once before.

I will always
Go beside you…

Yes.  Go beside me, Ronan.  I am your guide, and you forever will be mine.

Cathy Jameson is a Contributing Editor for Age of Autism.