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Spring Cleaning Special Needs Files

Retro wife cleans dad in backgroundBy Cathy Jameson

The kids had a snow day last week.  While they usually do better with a routine, I will always welcome an alarm-clock free day in the middle of the week.  With no need for any of us to leave the house, I wondered what I could do with the oodles of hours I had in front of me.  I could catch up on bills and emails.  I could make a double batch of gluten-free pancakes for Ronan.  Or I could clean out my closet.  Since it had been a while since I went through my closet, I decided to start some spring cleaning there.  Tossing aside clothing I didn't care for or fit it into anymore, by lunchtime I had a nice stash of giveaways to bring to the thrift shop.  I had half the day still ahead of me, so I decided to deep clean my closet.  That meant pulling out some storage bins I'd stashed in a dark corner under some dresses.  On the floor, hidden behind some full-length gowns I have, the bins were filled with old IEP notes, copies of old medical records, and countless years’ worth of old EOBs.  Only I knew about those papers, and for years, I let them bother me.  

I know I should've chucked much of what was in those storage bins a long time ago, but for several reasons I’d saved every single piece of paper in them.  I knew I had a big job ahead of me, so I lugged everything to the dining room to start to go through it.  Some documents were originals while others were copies.  The earliest reports went back to 2001 and to my first pregnancy.  All my life, I couldn’t wait to be a mom.  When I saw my old medical record, I was whisked back to happy memories.  With that ‘textbook’ pregnancy and a healthy baby resulting, I was as equally excited when we learned that child number 2 was on the way.  As I continued to go through each file folder, I was fast-forwarded in time.  Files related to Ronan were now at my fingertips.  My emotions changed. 

In that next stack, I came across handwritten notes mixed in with therapy reports from Ronan’s preschool days.  I found food diaries I'd kept when Ronan was being seen at a feeding clinic.  I found emails I’d printed out from other moms.  Some were encouraging, Cat, you can do this!  Others were littered with terms I’d yet to fully comprehend – Look up the Omnibus, vaccine injury tables, and mitochondrial disease.  Reading through some of those pages was hard.  I knew so little back then.  What I did know at the time, that my once healthy child now needed intensive care, didn’t make any sense. CJ vax docs

Some days, it still doesn’t make sense.

The more Ronan-related papers I found, the slower I started to sort.  Therapy suggestions, educational goals, medical emergencies, and outdated treatments plans brought me back.  They brought me back to a very dark place, but I continued.  One page at a time.  One painful memory at a time.  I read everything.  It was not easy, but if I was going to get this spring cleaning job done right, I needed to go through each page I’d saved.  After reading each page, I then needed to decide something:  keep it, recycle it, or toss it. 

Even though some of the paperwork brought back memories that are now part of an unfortunate reality, I decided to save several forms and statements.  My save pile was small, but later, something in it would become quite significant.  If I decided not to save the paper, I recycled what didn’t have any identifying information on it and created a pile of things to be shredded. 

Another hour.  Another file.  Another stack to read.  As the day wore on, I was happy to see my shred pile growing.  Toward the end of the day, I pulled out a file that was filled strictly with medical papers.  That file contained pharmacy print outs and medical encounter reports.  I’d stapled the reports to the accompanying Explanation of Benefits (EOB) from our old insurance company.  Save, recycle, toss.  Save, recycle, toss.  I’d gotten into a groove, but I then cringed.  I saw the term "Preventative" on one of Ronan’s EOBs.  Next to it was a dollar amount.  $102.42.  If I could get a refund on those vaccines, I would. 

$102.41.  What a price to pay.  Our co-pay and insurance plan covered, and even discounted, those preventative expenses.  I wish I could say that the care Ronan has needed post-vaccination is also covered.  Getting him the right providers and keeping him healthy has been quite expensive.  $102.41 barely covers the cost of the safe foods Ronan needs each week let alone the medication and therapy he’s been prescribed.  We’ve done a decent job of covering some of those out-of-pocket costs, but we have had to sometimes ‘rob Peter to pay Paul’ to make that happen.  Juggling money, as difficult as it is, has become a way of life.  I sat and wondered, It’s so hard.  It’s so expensive!  How on earth have we been able to do as much as we have for Ronan?  When I wonder that out loud to my Mom, she reminds me that we’ve gotten through it by the grace of God. 

Indeed, we have. 

I’d gotten distracted.  Push through, Cat.  Push through.  I did.  Until I started to recognize other numbers.  Dates on the EOBs were started to stick out.  I know those dates.  Why do I know them?  Oh, that’s right.  Those were the times I’d called the doctor after hours for help or when Ronan ended up in the emergency room.  With a quick look back at the EOBs, I could see that those ER dates coincided soon after Ronan's shots. 

September of one year...October of the next year... and then again in December... Like clockwork, those ER visits happened post vaccination.  They were not just a coincidence, and it’s foolish for anyone to believe that they could be.   

I’d been reading all day and had grown hungry and tired.  Determined to continue to sort through the other 2 boxes I'd dug out from the closet, though, I grabbed a snack and sat back down to continue to read.  At 4:55, one of the kids walked by the kitchen clock and said, "Wow, it's almost 5:00!"  While the kids had gotten to play all day, I had faced hours of mind-numbing reading, remembering, and sometimes, sadly reflecting on the past.  

Did going through each piece of paper help?  Did rereading any of it prove useful?  Did reliving some painful memories serve a purpose? 

Yes.  

Ronan had an appointment last week that required us to go way back in time.  I had to think and report on when his health deteriorated.  The doctor we were seeing wanted more information about his development and asked if I had any of the original labs we’d done when we first started to ask questions.  I had brought some records with me, but she needed something more specific.  It could take weeks to request and receive the particular document she’d wanted from the other practice.  On that snow day, while looking through those boxes and files I’d successfully ignored for the last few years, I found that lab test that could help our new doctor.  I made a copy of it for our new doctor. 

Results of that old test are obviously very old, but it was mentioned that having that data could help us.  I emailed the doctor’s assistant telling her about my find.  This was her reply: 

Hi Ms. Jameson!

 Awesome, this is very helpful, thank you so much for sending this over…

Since I'm a hopefully ever kinda gal, I'm praying that my efforts will help her.  I know that spring cleaning those files out of my closet helped me.  It was freeing to get rid of them.  I’d held onto some of those documents for far too long.  Ronan’s grown beyond many of the therapy suggestions anyway.  He’s leaps and bounds ahead of some of the special needs educational supports he required, too.  Ronan’s still got a ways to go before he’s anywhere near independent, but I don’t need to hold onto reminders of when he wasn’t.  I’d rather focus on where Ronan is and where we’re both going.  Forward.  I’d like for us to both be going forward.  Without those storage bins weighing me down, and with a doctor on board who wants to help, I feel like I can do that.   

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

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Hans Litten

Posted by: Loraine Fishel | March 26, 2018 at 04:45 PM

What a brilliant comment.
They are planning to light up various place blue in solidarity.
Makes me sick. Angry. Rage.

Loraine Fishel

This is why I read A of A. It helps me feel less alone in some of these difficult issues that no one else could possibly even try to understand. Spending literally millions to try to give your child part of their life back. Looking back at the long painful trail of medical treatment. The before and after that frankly I try not to think about. All of you can understand the knot in your stomach when someone asks you, "Are you sure it was the vaccine? Don't you think that it was maybe just a coincidence that your child turned blue on the day he was vaccinated?" At those times I think that no one wants to understand. They don't want to consider that vaccines can and do sometimes cause a lifetime of real suffering.

LizP

In two months, K will graduate high school, at age 18, with a regular diploma! She has required >$2M in therapy, supplements, special diet, and treatment to get here. 16 years ago, the developmental pediatrician advised she would never speak with intent, toilet train, or even be capable of bagging groceries- he suggested I place her on a waitlist for a local institution, because she would need this in three years. Looking back, I don’t regret burning his paperwork and setting out to find a better hope for my daughter. She has worked incredibly hard to come this far, and I plan to keep pulling her forward in hope that, one day, she can have independence, a career, and a life of her own choosing; if we don’t make it all the way, at least we will have given it our all. Either way - she can now speak, and take care of most toileting needs, and she shelves books at the library in the summer, and loves to sing in the chorus. She now has her own apartment (fully supported at this time), and is working to learn to live independently, which shows that medicine really is practicing and not an art.

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