By Cathy Jameson

It’s ridiculous how long it takes and how many hoops we have to jump through for our children to receive the care they need.  Nine months.  That’s how long it took to get a procedure done in the specialty clinic.  What you or I, without complications, could have scheduled, had performed and recovered from within a few weeks, took nearly forever.  Originally scheduled for December, it didn’t help that last summer someone in the specialty clinic put Ronan on the wrong doctor’s schedule.  Their ineptitude caused further delays that already exist for patients with special needs.  Unable to get him on the top of the correct doctor’s schedule, we waited through another rescheduling. 

Booked way back in August, the original December appointment got moved to January, then got moved again, then landed on a date in May.  Asked to please have Ronan put on their cancellation list, we were offered a spot in April.  “Mrs. Jameson, we have an appointment that just opened.  Would you like it?” 

Oh, yes!  Let’s do it! 

Then the scheduler told me the date.  “It’s on the 9^th.”  I went from elated to absolutely crushed all over again.  “We can’t.”  That was the day after Ronan’s sister’s second surgery for an injury that had her back home from college.  While Ronan’s needs were great, his sister’s immediate need was greater. 

Having to pick which child needed care over the other was agonizing. 

So was pushing away others who wanted to help us.  Another specialist said he could piggyback on Ronan’s procedure, which we welcomed, but his office couldn’t manage the changes and delays.  Even though no fault of their own, that doctor’s staff apologized, “It shouldn’t be this hard for you.” 

But it is. 

Two weeks before the long-awaited appointment, the scheduler called once again, “Mrs. Jameson, I have another opening – it’s next week.  Do you want to move Ronan’s appointment up?”  It was late Friday afternoon, and a confirmation was needed immediately.  She knew I needed to work some things out, so she said, “Call me back, I can hold this spot for you while you figure things out.”  She gave me ten minutes.  Ten minutes to decide how to arrange, rearrange, and hope to God that everything that needed to be done could get worked out.  That didn’t just mean work things out for Ronan but for our other children, and for me and my husband who now needed to request a different day off from work.  The timing wouldn’t be the greatest as we would have to rush to get a pre-op health physical done, too, and faxed to the clinic by Monday, but I confidently said yes.  Calling the office back, I said, “Let’s book it.  We’ll see you next week.”  Hanging up, I raced to get things ready. 

If it’s meant to be, I said to myself, every door would open.

Thankfully, every door opened.  Preparing to be gone all day, and possibly overnight if any complications popped up, my nerves were a bit high as I packed for the hospital.  It wouldn’t be much I’d need to bring, but I still made sure to give myself time to have everything ready – a change of clothes, a few extra diapers and pull ups, Ronan’s meds, some snacks for me and my husband, and our guardianship paperwork.  We usually carry those in Ronan’s bag, but I made sure to put that envelope in my backpack.  Sure enough, that paperwork was needed.  The hospital hadn’t had those on file, but one of Ronan’s amazing nurses made sure to document that we could – and always will – speak on Ronan’s behalf.

From start to finish, the staff who walked into and out of the exam room, the operating room, and the recovery room were phenomenal.  I won’t say it was worth the wait.  That would make it sound like I accept the unnecessary and long delays.  I don’t.  Ronan should’ve had that December appointment.  Someone within the system should’ve fought for him to be moved up to the top of the correct doctor’s list, not add him to the bottom of the correct list and hope he moved up.  

While the procedure itself was not too complicated, Ronan’s health was compromised having to wait so long to correct a few issues.  Forced to make decisions we were not expecting to make while Ronan was under, I appreciated it when the doctor updated us during the procedure, especially when we had to make decisions about those issues before proceeding.  Giving us good information to help us know all options the team could do, the doctor added, “You know Ronan better than anyone else.  We’ll do what you think is best for him.” 

What’s best for Ronan – to keep him safe, happy and well cared for.  Always.

If Ronan was seen sooner, I know that some of the work that had to be done during the procedure could’ve been avoided – because it would not have gotten to the point of needing as much medical attention.  Ronan’s doctor recognized that and later told us he did not want that to continue for Ronan or for other patients like Ronan. 

I welcomed his frustration.

Had we had that original appointment when we booked the procedure last year, that conversation may never have happened.  Waiting almost ten months for Ronan to get the care he needed helped the doctor understand our frustration.  Already fueled with a desire to make some necessary changes, he had made it known to hospital admin that things have to change.  Not just for the patients and their families, but for the facilities who are not serving patients well.  The wait time, the additional difficulties that begin while waiting for appropriate medical care, the faith lost – in everything, must weigh on him because he has a plan to fix that. 

And I fully support it and him. 

“If you ever need parent input, call us.  We’ve been dealing with this sort of stuff for years now.  And the one who suffers the most is Ronan,” I shared. 

Before we leave, we usually joke with staff who we’ve loved getting to know while they’ve been assigned to work with Ronan, “We hope we never have to see you again.”  This time, I do hope we do get to see this doctor again.  I hope he does reach out to us because yes, we do know Ronan better than anyone else.  And he respects that and wants to do better for him.  I’ll never be thankful for the massive delays these last few months, but I am thankful for the time this doctor could finally give to my son.  We need more advocates like him.  

Cathy Jameson is a Contributing Editor for Age of Autism.