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Autism and PANDAS

“You” Turn

U-turnBy Cathy Jameson

I saw four cars make a u-turn at a major intersection one morning.  It’s not such a big deal.  Everyone retraces their steps every now and then.  One by one, car after car, those drivers turned back toward the direction they’d just been driving.  I have no idea why they drove away.  It’s none of my business really.  I was sitting in my own car across the intersection concentrating on where I needed to go--to get Ronan to his special education classroom.  I had factored in just enough time to make it before school starts.

Ronan is greeted by one of his teachers at the curbside each morning.  I’m so grateful that we have this system in place.  The school understands the great need Ronan has with making smooth transitions.  He’s offered assistance the minute his big toe lands on school property.  Ronan has struggled in the past just getting into the building which could delay our mostly on-time arrival.  That struggle prompted the option of being greeted in the parking lot.  The ease of this transition helps make the first five minutes of Ronan’s school day much easier.  I am available to jump in if needed, but the teachers have control to guide Ronan to start his day in the direction he needs to go. 

I breathe a sigh of relief most days once Ronan has made his way to school safely and into the hands of people who can continue to help him be successful.  When drop off isn’t quick and easy, because not every day is perfect, I slowly pull away from the car rider line peeking through the parking lot.  I carefully glance over my shoulder wondering if I need to go back through the line to see if Ronan made it to and through the front door.  Since I’ve never been called back to assist that morning routine, I safely assume Ronan is on where he needs to be.  

Not in a million years did I think I’d be toting a kid to a special classroom with specific accommodations for his individual educational needs created wholly for them.  Not in a million!  I planned on perfectly created babies that turned into typically developing children.  Those children were supposed to grow up and waltz gracefully into society.  Then, my productive and happy adult children would shower me with grandchildren for me to spoil as I aged into a peaceful retirement on a coastal beach setting.  Ahhhh, isn’t that image fabulous!

I’ve had to make several mental u-turns in my own life over time.  Ronan’s education being one of them.  His lack of self-awareness and safety skills another.  His communication delays the most troubling.  Future hopes of mine for him the hardest to stop thinking about.  These types of u-turns weren’t planned in what had been a “perfect” outlook I had for my son when he was born.  But over time, as Ronan started to show signs of delays, turning slowly around to look back at how far he’s come from those early struggles were helpful.

Mental u-turns aren’t easy to maneuver.  Ones that involve a child I had big hopes and dreams about are crushing.  I had hopes for Ronan.  I still do, but they aren’t as big as my original thoughts.  It took awhile for Ronan to slide into the special needs world.  Revolving thoughts of will he or won’t he make it swirled in my head early on.  I contemplated a new outlook always thinking Ronan could bounce back onto a typically developmental scale, couldn’t he?  After treading into that special needs world I never thought I’d ever enter, I felt like I was looking at Ronan and all of his challenges from a distance.  A ‘Welcome Aboard!’ package wasn’t provided when he bombed several developmental rating scales.  No one greeted me with delightful stories of how grand an experience it would be to have to battle government support systems that don’t really support Ronan’s needs.  I couldn’t help but look over my shoulder the further Ronan veered away from typical wondering, did this just really happen?  Do I really have to do this?   Am I really looking down a different path to raise Ronan?  Wait.  How did this happen??

When I was able to see everything somewhat logically again—Ronan was born.  He was fine.  And, now he’s not.  Let’s get him some help--I thought I was taking steps forward by asking questions about his cognitive delays.  I thought I’d round the bend of the mysterious links of sicknesses and new struggles, but something still wasn’t adding up.  I thought surely I’d find someone with medical training to solve the other mysteries that were emerging in Ronan’s development.  I’ll never forget the day I decided the only other place I could look was backward when I thought I wasn’t making any forward progress.  Once I made that choice to go back and retrace Ronan’s development, his milestones and my own memories, I had to commit to seeing it through.

I was thinking like a detective for quite a bit of time completely forgetting that I was first and foremost a Mom.  I hadn’t prepared myself for the flood of emotions that came with making a mental u-turn.  Those emotions can break someone.  The image of a child lying on an exam table becomes a haunting memory.  Being the parent that partook in the planning and executing of that quick yet painful decision is part of the undeniable history.  The moment that discovery happens will be forever burned into one’s mind.  

Is it healthy to always go back to such a painful point in time?  Knowing that I can’t change what happened adds an extra burden to an already bulging bag full of emotion I probably shouldn’t still be carrying.  No matter how hard I or other parents wants to will the vaccine injury away, it happened.  It’s there.  Proof is in the child we care for.  While it might not be clearly accepted across the mainstream world, vaccine injury does exist.  It has been clearly proven time and again by those of us who did stop and retrace our steps to the instant the needle was inserted.

Fortunately some children are blessed with speedy recovery that brings them back to typical health and a more abled development.  Other children, like Ronan are sometimes stuck in recovery limbo making their progress at a much slower pace.  His pace and my quest to find helpful therapies are part of the planning I have had to embrace.  It shapes the new dreams I have for Ronan and who I think he might be one day.  I still long for complete healing for Ronan and for a full recovery, but dreams of success at his level with his current abilities hover in my mind.   I can never stop looking for answers or for the chance to get a tiny bit farther.  Seeking to right the wrong is what I’ve committed to now and to when forever happens.  Who knows?  Maybe it will still be possible for Ronan to one day give me grandbabies to spoil. 

I look forward to a different kind of peace when I finally feel like I can stop looking for answers and when I can finally sit still.  As much as I’d like to always feel like Ronan and I are moving forward I won’t stop retracing my steps.  I won’t stop looking over my shoulder either.  I will look to the past to guide my future because Ronan’s medical history then will always be related to the decisions I have to make for him now. 

Cathy Jameson is a Contributing Editor for Age of Autism.


Anne McElroy Dachel

Cathy, thank you for this story. None of us expected the lives we now have. Nothing could have prepared us for what lay ahead.

What makes things possible is the tremendous support we receive from each other. I'm just a mom in WI but I've got contacts around the world now...people I never expected to know. Having so many wonderful advocates out there inspires me every single day.
Anne Dachel, Media


Cathy, I agree with you that we will not ever give up on our children! The answer to our childrens' illness will be found and we must continue to hope for it to emerge in the very near future! The future of our society depends on it!

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