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Validated

Team Ronan
The Jamesons are always a team.

By Cathy Jameson

In trying to fix a major benefits issue last week, I learned that I was not listed as Ronan’s mother in the company’s system.  Instead of helping me, I was told that I was unauthorized to speak on my son’s behalf.  I wondered how that could be as I was the one who filled out, signed, and submitted the forms for him to be enrolled in their system.  After making some calls this week, I am pleased to share that that that major issue has been resolved.  I am now recognized as Ronan’s mom! 

In all the years I’ve had to speak up for my non-verbal son, it was the first time that someone had dared deny my role.  That denial caused further delays for a time-sensitive issue.  The other problem, which could cause serious consequences, has unfortunately not yet been resolved.  I’m still working on it and will continue to until Ronan gets what he needs.  I had to put those efforts on hold for one day this week though.  That day, we’d head back to the same hospital that Ronan was transported to by ambulance to last month.  This time, I’d be driving him myself. 

Ronan’s done well since he was discharged.  While healing, he’s gained back some weight and energy.  Happy to share that news, I looked forward to hearing what next steps the doctor thought he’d want to take at this follow-up appointment. 

This doctor wasn’t the same doctor who treated Ronan back in December.  The one who treated Ronan was very thorough and incredibly kind.  Before the new doc would get a chance to share his thoughts with me, he asked that I recap some of Ronan’s medical history and what had brought us to the hospital last month.  I shared as much as I thought relevant, and then I listened to him share what he knew.  He knew a lot!  It was clear that he took time to read through much of Ronan’s medical file.  He was aware of the other specialists we see and why.  He was knowledgeable of the type of care Ronan receives already and wanted to continue what was working without interruption. 

I got a good feeling this new doctor, so I eagerly listened to the treatment he wanted to propose.

Since my husband couldn’t join us that day, I took notes while the doctor spoke.  I stopped writing when the doctor shared that he wanted to bring in more specialist.  Reminding myself that adding specialists isn’t always a bad thing, I locked eyes with the doctor and asked him to tell me more.  He filled me in on who would also join the team and then gave me time to ask as many questions as I could think of.  A young resident, who had joined us in the exam room, stayed quiet for most of the conversation.  Soon, she’d be given time to interject her thoughts.  I appreciated that she, too, knew enough of Ronan’s history to understand how unique he was.  She brought up past diagnoses and past treatments and wondered if those may have contributed to the current problems Ronan’s dealing with.  I thanked her for bringing up what other doctors we’d seen elsewhere quickly dismissed.  I also thanked her for asking questions that others didn’t think to.

I’m always hopeful that we can ditch a specialty, but because Ronan’s complications are so complicated, we will be adding more to the team.  Added new people can be exhausting.  It’s new set of eyes looking my kid over.  It’s getting used to new personalities that I may not be ready to deal with.  It’s preparing for new attitudes also.  Having an attitude can be good but only if it’s a positive one.  We’ve had our fair share of negative ones, so I’m always apprehensive when I’m introduced to new medical staff.  Ronan will sometimes be anxious also.  I’m grateful that the people we met on Thursday were respectful and receptive about everything Ronan’s gone through.  He was comfortable enough that he signed directly to one of the people.  Instead of asking me for help, which he would normally do, he communicated to them.  That spoke volumes to me.   

We’re not out of the woods yet, but, together with these specialists, we’re putting together a better plan for Ronan.  Testing that has been ordered will need to be completed before we do anything new or different.  Even then, I was told not to be surprised if other specialists are consulted and later asked to join the team.  At this point, because I believe that Ronan would benefit from their expertise, I welcomed that.  So far, the collaborative effort is working.  We’re getting to see the right people, and they’re giving us time to weigh and consider multiple options.  From the sound of it, it’s not a one-size-treats all approach either.  We’ll have choices, including natural ones (vs. strictly prescribed medications) that could help us help Ronan. 

All in all that day, Ronan had 3 appointments to get to.  I’d prepared him for the long day, including that we’d see people we hadn’t met yet.  Before I left the hospital, one of those people looked at me and said, “I know it’s a lot to take in and think about.  But of course, Mom, you’ll have the final say on what’s done for Ronan…”  The final say.  It comes with a lot of responsibility.  It also comes with something else.  It tells me that that doctor valued my opinion and my role as Ronan’s mom.  I’ve shared before that I never need to feel any sort validation for anything I’ve done.  In that moment, though, I felt that everything I’ve done for Ronan was in fact validated.  

That day, we gained 3 new people to our team.  They want to help Ronan.  They want to help me help Ronan, too.  There’s no better feeling than that.

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

MamaBear

Unstoppable, unsinkable, incredible Mom and Dad ... no wonder Ronan resembles his parents. Prayers as you continue to love your way through life.

Carolyn Praying

@max sounds like a mini documentary could be helpful to let legislators understand the idiocy of the lack of coordination .

Cathy I see the hand of God and all our prayers finally sending you doctors who are highly motivated and capable of helping.

This is what someone told me long ago. The best and the brightest in medicine always want to learn more, So the only good thing about having an unusual problem is that if you find one of them they will move mountains to solve the puzzle, motivated by both compassion and curiosity. I look forward to one day seeing Ronan on YouTube talking about the day it all cane together for him, the day the doctors solved the puzzles, and his love for his amazing family and unstoppable Mom.

Mark Wax

It is an ongoing insult and battle. Despite submitting all appropriate documents to Social Security, one is required to duplicate your efforts with Medicare and Medicaid. The agencies do not even communicate the guardianship to third party providers THEY select and/or change, ie; Part D managers. Even then, the mail comes addressed to our incompetent son and phone calls still happen where the caller asks to speak with him. I cannot count the hours wasted while simply doing the right thing. More tragic is the numbers of people who don't have the resources ( time, intellect, etc) to battle this Byzantine system. I have written both Senators and House Rep. They have no idea how things work and simply can't help even when they want to.

Bob Moffit

God bless Ronan and your entire family … it is very encouraging to read you are being treated with the respect you deserve .. having EARNED that respect throughout Ronan's challenged life.

Praying 2020 is the year when all of our concerns are VALIDATED.

Vicki Hill

Glad this turned out well. Just a warning, though, as he is about to turn 18. Get guardianship immediately and carry a copy of it everywhere. Be prepared for phone calls from hospitals and insurance companies; in spite of that guardianship, they may ask to put your son on the phone so he can personally tell them that he agrees with your taking charge. (Especially if you run into mental health issues, as laws in some states are more protective of a patient's mental health rights, even if you hold guardianship.)

We tend to think of guardianship as it applies to children with significant disabilities. But guardianship is also used at times for seniors with dementia. And it has been abused at times by relatives wanting to control their family member's money or just get the family member out of the way.

Arguing about this treatment is likely to make the care provider more suspicious. Keeping documentation by a doctor handy, which shows the level of disability, may be the fastest way to get the gatekeeper on your side. It feels like the gatekeeper is just being obstinate, but there is a reason they have to double-check when they are communicating with a guardian as opposed to the patient.

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