Happy Father's Day!

By Cathy Jameson

I got a call from a group that helps with some of Ronan's services that I knew would take awhile, but I couldn't stay on the phone when the lady called.  Setting up an appointment for the next day, the call was not quick like the lady said it would be.  Like how long it took for Ronan's vaccine injury to set it, slow and painful, so was our conversation.  I've had plenty of these kinds before.  But the longer Ronan cannot, will not, and would not do many of the tasks that I had to go over, the more depressing things get.  The lady quickly picked up on that, like other reps have, and that's when the apologies began. 

At minute 20

I'm sorry, it's taking so long...

After 47 minutes

Here's one more I'm sorry I have to ask...

At a little over an hour

We're almost done, thanks for your patience...

If only the chronic conditions could end like this phone call finally did.  But because of those conditions, long phone calls and securing existing services are still part of life.  What's next brings a new set of emotions, including apprehension.  

Before we hung up, the lady shared a promise of reviewing his file.  “His file goes to those consulting on the case.  After that will be a determination of what will be done next, which includes considering the services he currently uses.”  For his health and safety, we depend on specialists, services, and interventions that we receive.  We are grateful for the coverage, the assistance, and the peace of mind that comes with being part of organizations whose mission it is to reach out and deliver services to people like Ronan.  

Always mindful of how detailed intake and renewal paperwork must be for continuity of care, I'm respectful and thorough with my answers, even if they conjure up everything my son can't, won't, and may never be able to do.  In order to give a solid answer for some of the questions, I know to share more.  Some responses could be a quick yes or no reply, but others required more information. 

Is he able to tell you what he needs? 

Well, yes. But no.  He signs.  But it's not American Sign Language (ASL); it's Ronan Sign Language (RSL). 

Does he make his own meals?

He tries.  But he needs total assistance.  

Can he toilet on his own?

We've set up a bathroom schedule.  But he doesn't always make it. 

Is Ronan able to make his own bed?

He tries, and it's the cutest thing to watch.  But no, he can't… 

Other questions were ones that had me answering if what he can do today is the same, better, or worse than last year.  I knew how I answered could either secure a current service we have, or an answer could have that change—possibly eliminating what he receives.  Talking about some topics was tough, especially having to describe the medical issues Ronan faced last year that landed him in the hospital.  During that time, his abilities worsened and caused an inordinate amount of worry.  He faced unknown issues that caused new problems, problems that welater learned could've been avoided.  

Like how he got sick in the first place all those years ago, a lot of this could've been avoided. 

It can be overwhelming when one agency or another asks for an update.  But I know that the sooner I answer their questions, the sooner those updates can be processed.  Rone's vaccine injury has been never ending, so the services we rely on to keep him safe and healthy also needs to be.  Ronan needs constant care, so I get back to work getting done what need to be done.  The sooner I go through the emotions, the sooner I refocus.  It’s work, and it’s hard, but it’s the most worthwhile work I can and will continue to do for my child. 

Cathy Jameson is a Contributing Editor for Age of Autism.