Joanne Stankos, Mother of Twelve Year Old Taekwondo Black Belt Jaden, Tells “Jaden’s Story”

{Editor’s note: This piece speaks for itself, but I just wanted to mention how proud I am of Jaden and his family for the work they are doing during their journey. Jaden, you’re an impressive young man and a true warrior. I hope that I get a chance to meet you and your Mom at some point! –Jay}

By Joanne Stankos

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This is Jaden’s story.  His story of living with Post Concussion Syndrome.  He would write this on his own if he could, but he can’t.  His story is like so many other suffering with PCS.  But his takes a slightly different turn.  But I am getting ahead of myself here.  I am his mom.  I hope I do him justice by telling his story.  He will definitely let me know.

July 2, 2013.  That is when Jaden’s life changed.  I can still hear the deafening sound of the arena going silent when it happened.  It was the only time I have cried immediately upon seeing Jaden get kicked.  I knew that this time was different.  Little did I know how different.   We had just entered into the world of PCS.

Jaden fell in love with Taekwondo the first time he saw a demonstration.  He came home from school one day when he was 8 years old and begged me to let him try it.  And that was all it took.  He was a natural.  By the end of his first year, he was invited into the Master’s Club and Leadership Team.  Shortly after that, he was asked to join the Demo Team.  Five nights a week, Jaden spent his time at Taekwondo, taking a total of 12 classes a week.  He loved it.  It wasn’t just the sport.  He loved the meaning of Taekwondo.  The story that each move told.  Then, he was asked about joining the Competition Team.  I hesitated.  I wasn’t sure if he was ready.  If I was ready.  It was one thing to have Jaden take a sparring class where a light touch to the head was reinforced and anything more than that was not allowed.  But in a ring, that “light touch” fell within a very grey area.  One month later, at the age of 9, Jaden did his first competition.  He won 1st in sparring and 1st in poomsae.  His journey as a competitor had begun.

Team members would come and go but Jaden never waivered.  He had a goal by end of his second year of competition.  He wanted to go to the Olympics in 2016.  As grand as that statement is, it was as simple as that for him to make.  Three years later, Jaden earned his 1st degree black belt at the age of 12 and attended his first international competition, the US Open.  Attending the US Open was not about winning for Jaden.  It was about learning more; soaking up every little bit of technique he could, being around those that he had looked up to for the past three years.   He was right.  He didn’t win a medal but what he gained was worth so much more.

July 2, 2013.  It was Nationals.  Jaden’s first time as a Black Belt.  He had been at Nationals before but this was different.  He was a 1st degree Black Belt now.  And this was his first time in the 12-14 yr olds Black Belt division.  For any of them at this age.  They had changed the age division this year, now including 14 yr olds.  I, once again, hesitated.  That would be too much of an age difference.  Children’s bodies at 12 years old don’t have the same maturity as 14 year olds.  But how could I take away or postpone his dream?  Looking back, I wish I listened to my gut.  Looking back, I wish I had never said yes.  Looking back makes it all seem so clear.

Jaden was matched up with a 14 year old.  Jaden was 12.  I felt that panic I so often felt when I see Jaden walk onto the mat before the match begins.  But this was different.  This is how Jaden describes it.

“I was the 1st person to fight.  My opponent was 14 and much taller than me.  The match started and he got the 1st kick in and then he made a fast roundhouse kick to my head.  I felt my head thrown to the left at a fast pace.  All I remember was him saying ‘I’m sorry’ and the crowd just gasped and then silence.  I remember someone coming over.  But everything went dark.  I’m sorry but that is all I remember.”

Jaden doesn’t remember that the referee came over and asked him if he was okay.  Jaden doesn’t remember saying that he was fine.  Jaden doesn’t remember that he kept fighting for 30 more seconds.  Jaden doesn’t remember being taken off the mat to the medic center.  He doesn’t remember flying home the next day.  He doesn’t remember much of anything from that first month.  Just bits and pieces.

Jaden was diagnosed with a concussion at Nationals.  His first set of scans showed nothing.  No brain damage, no damage to the neck.  This would be the first time I was told that if he didn’t lose consciousness from the kick, he would be fine.  And this would not be the last.  Within 2 weeks, Jaden was diagnosed with PCS.  This was Jaden’s first documented concussion.  But there had been more.  I just didn’t know.  I wish I had known.  I can easily say that he has had at least 3 concussions.  I just didn’t know.

Jaden was experiencing every single symptom of PCS.  Life around him was his enemy.  The headaches were unbearable.  They never went away.  Sensitivity to light was all encompassing.  We stashed sunglasses everywhere, just in case we forgot to bring a pair with us.  He said any light blinded him.  It took all his strength to keep his balance.  He could not focus.  Everything in his world looked blurry.  He would go to reach for something and it would be inches away from his grasp.  His mind could not understand why it wasn’t there.  “Its right there Mom, I see it.”  He felt confused, in a fog . . . just not right.  Post Concussion Syndrome.  Its name does not do it justice.  It takes over your life in every possible way but you look fine.  Not to those who know and love you.  But to those who don’t.  To all those doctors who see you for the first time and the second and say, “well, you look good.”  You want to scream.  You have no date on the calendar to aim for healing or even change.   It is a process that never ends.  It is a syndrome that stops you from living your life . . . for how long, I don’t know.  We are not there yet.  But we will get there.

Like all sufferers from PCS, he was told to go into a dark room, no sensory input, no electronics, no light.  For 1 month, this was what he did.  He did this not only because his specialist told him to but also it was all he could do.  I remember 2 weeks in, praying that if he could even stay awake for longer than 3 hours that we had reached a milestone.  Three weeks.  “How would you rate your pain?”  An 8.  “An 8?  The guy next door with a fractured leg.  That is pain.  What you have is not that kind of pain.”  That was the beginning of one doctor after another, not understanding PCS and not validating what my child was going through.  Studies have shown that if your child has a learning disability, ADHD/ADD or anxiety, PCS will be worse.  As I was informed, it was like ripping off a scab.  All the struggles your child went through before are going to be even more evident now.  Make sure you have a doctor that really understands PCS.  Because if they don’t, these struggles that your child went through 5 years earlier will turn into the focus of what is going on now.  Jaden’s PCS took a drastic turn once this was documented.  His inability to focus was due to ADD, not PCS.  His inability to cope with his symptoms was due to his anxiety, not PCS.  His brain “shutting down” was due to a psychosomatic issue, not PCS.  Whatever you do, stand up for your child.  PCS is a crippling, debilitating syndrome.  Just continue to fight.  Continue to move forward.  Because there are many, many dark days but there is light.  And it is a good light.

Jaden was starting to show improvement about 6 weeks in from his initial impact.  Small but improvement.  It was time for school to start.  A temporary 504 Plan was put into place.  We had all the doctors that were working with him have their input placed into the 504.  Don’t be shy about having a team work with your child.  Jaden had multiple doctors from a Sports Medicine Physician, Neurologist, Neuropsychologist, Vision Specialist, Pediatric Rehabilitation Specialist to a Psychiatrist.  I wish we had just one doctor that specialized in PCS.  But even where we lived, in Houston, TX, finding just one did not fit all that Jaden needed.

We went to the school to pick up his schedule the week before the first day of school.  We were there no longer than an hour.  I could see he was trying to be brave and hide the pain.  Seeing friends that he had not seen since the accident and trying to act like all was okay.  As we were walking to the car, he said “How am I going to go to school, if I can’t even do this?”.

He did start school with the 504 Plan that had all the recommended accommodations and modifications for PCS.  Shortened day, modified schedule, no homework, no tests or quizzes.  His teachers were wonderful.  They followed all the parts of the 504 but even went beyond.  Dimming the lights in the back of the classroom for him, working with him one on one, reading most of the lessons to him.  We started at half days.  It was too much.  Tried quarter days.  Too much.  Tried 1st two periods.  Eventually I was called to pick him up after 1st period.  It was too much for Jaden.  He would go for part of a day and couldn’t go for the next two.  The pain, the migraine and nausea would overtake all of him.  He could not remember what was taught.  He said walking in the hallway was torture.  He felt as if kids were standing next to him, touching him, yelling in his ears.  The lights in the hallway . . . I would pick him up and his eyes were glazed.  He had developed an eye tic from the intense sensory overload.  We had gone from 4 hours of school to nothing within 4 weeks.  Going to school had turned into just surviving.  And he had lost all the progress he had made.

We had the ImPACT testing done in late September.  After the test, the doctor spoke to me separately.  I was told that my beautiful, amazing 12-year-old son had one of the worse results he had ever seen.  That his road to recovery would be a long one.  “You need to take him out of school.  Your main focus needs to be on him not getting depressed.  Don’t tell him he will never do Taekwondo again or any contact sport.”  And then he sat down with both of us.  He was so good with Jaden.  He told him he was brave and that this will get better.  It will take time but be patient.  As I was driving home that day, Jaden asked me if he was ever going to spar again.  I wrestled with what my answer should be.  But I have never lied to Jaden.  I told him that he wouldn’t.  He would never do a contact sport again.  And as huge as that was to him, I thought, it was just that simple.  “That’s okay.  There is more I can do.”  That day when we got home, I wrote the following:

PCS does not define you.  You will recover from this.  And you will be stronger because of PCS.

Jaden signed it.  It is still on our chalkboard in our kitchen.  And next to that, Jaden picked the following verse.

I can do all things through Christ that strengthens me. 

            Philippians 4:13

I withdrew Jaden from school that next week.  There was no point.  He was not remembering what he was learning and his symptoms were getting worse.  So it was time to take a different approach.  I decided to home school him when he felt good.  The room was lit with only natural filtered light.  Learning was done for a maximum of 30 minutes at a time.   No more than 2 times a day.  And things seemed to get better.  Slowly.  By December, he had made it half way through most of his subjects.  And then, there was a shift.  As soon as we made progress, we started to lose it.  We went from homeschooling 5 days a week to 4, to 3, then none at all.

I felt lost, frustrated.  If this was PCS, he should be making some progress.  But he wasn’t.  I felt that there had to be something more going on.  Not that PCS isn’t enough to change someone’s life.  But he was getting worse.  His short-term memory was getting worse.  He started to not remember where he was, where he had been or even who I was.  And I was his constant.  I was almost used to him not remembering going to a doctor’s office earlier in the day.  Or the grocery store to pick up a few items.  I just glossed over his confusion.  My only goal at this point was not have him realize that he was losing his ability to remember.  I needed him to still be that happy, amazing kid.  And he was.  He never got depressed.  I don’t know how.  I was.  But he didn’t.  “There is a reason for this mom.  I know I am meant to teach others about this.”  But life was slipping away.  So many of those who suffer with PCS talk about the isolation that comes along with it.  The only way you can heal is to retreat into a black hole.  When you are 12, your friends are going to school, playing sports, hanging out, texting . . . being just a kid.  My heart broke for him.  His life was so full before.  And now, it wasn’t.  It was empty.  So the continual search for something more steered me towards a different path.  A new set of doctors.  If I have one word of advice, never give up.  Go outside your region of where you live, speak with those who know, really know PCS, and keep pushing.  I went to every major hospital in Houston.  And every single doctor told me that he had one of the worse cases of PCS.  It is just going to take time.  But I just knew there was more.  There had to be.  Don’t give up.  And then, someone living with PCS connected me with a specialist across the country.  Without meeting him, I am not sure where we would be today.  Because he led me to two key people, a Pediatric Rehabilitation Specialist and an Orthopedic Surgeon specializing in the neck and spine that changed our path dramatically.

It all started with a tremor.  Jaden started having a slight tremor.  I say slight.  Sometimes it was strong and violent.  Sometimes it was quiet and gentle.  It would only last moments.  He could go days without one and then, it would be there.  His pediatric rehab specialist could trigger it.  As she would work on his neck, ever so lightly, his brain would shut down.  Those are the words she used.  He wasn’t asleep.  His brain literally would shut down from the pain. In this state, she could manipulate his arm, his foot to move.  She said there is more here.  Cord Compression?  No.  Atlas bone injury?  No.  Anything with C1 or C2?  No.  I had been told over and over again that Jaden had no medical issues with any of these.  “There has to be something more.  I wish I could help but I do not feel comfortable working with Jaden anymore.”  So this brings me to our current story.  If it weren’t for her, we would not be where we are today.

All the pieces were starting to fit together.  Certain things that doctors had said along the way in isolation didn’t fit or make sense.  But over 9 months of time, they did fit.  We were about to start Atlas Orthogonal Chiropractic Therapy for Jaden.  But the doctor was concerned.  She said looking at his scans, I am not totally sure that his transverse ligament is stable.  Bring him to an Orthopedic Specialist just to make sure.  We went.  My heart wasn’t invested in this but we went.  Maybe that was a good thing that I wasn’t holding out for all the answers.  Because I wasn’t prepared for what I heard.  Jaden had an Atlas Transverse Ligament Tear.  To put it in basic terms, his C1 and C2 were so unstable due to this ligament being unable to support his neck.  Whenever Jaden moved, he was experiencing cord compression.  Did he break his neck?  No, that is not the medical term for this injury.  But an injury such as this leads to two things, paralysis or death.  The only way this was found was by doing a new set of MRI’s, Cat Scans and X-Rays standing up.  Not lying down.  Lying down, he looked normal.  Stable.  A combination of 10 previous scans lying down, he was a perfectly normal 12-year-old kid.  One set of these, standing up, he was unstable.  He was broken.

Jaden turned 13 on March 3, 2014.  On March 4, 2014, he underwent spinal fusion surgery of his C1 and C2.  I thought I was prepared to see him with his halo on.  I wasn’t.  My heart broke.  But that wasn’t the only thing that tugged at my heart that day. His surgeon came to check on him while in recovery.  Jaden’s amazing strength showed itself so clearly in that moment.  He lifted his hand into his surgeon’s hand.  And said “Thank you.”  No one could speak.  I think back at that moment in time and I am still rendered speechless.  Maybe Jaden knew more at that point than I did.  Because I wasn’t sure if this surgery would help any of the PCS symptoms.  His surgeon said it wouldn’t.  All I knew is that we had no choice but to do the surgery.  He spent 3 days in ICU, a total of 5 days in the hospital.  In 1 week, the halo will be removed and a hard neck brace will be put into place.  Another 6 weeks and the brace will be removed.  Then, and only then, can he start physical therapy.  Does spinal fusion surgery fix PCS?  No, it doesn’t.  So please don’t think I am telling you his story because this will fix PCS.  I am telling you his story because I want people to know to never give up.  Never settle.  Jaden still has PCS.  But my hope is that he will have a fighting chance now.  He will be able to make the small steps towards feeling better.  Towards having a life.  A different life.  But I actually think a better life.  He will have a story to tell, to share.  I made a promise to Jaden in January of this year.  All he wants to do when this is over is go back to school.  A simple request.  I promised him that he will go back to school.  He will go back to his life.  His life before looks very different from what it will be.  But he can have a full and amazing life.  And that includes Taekwondo if he chooses.  But he will never spar again.

I wish I can say that I never yelled for Jaden to do a head kick.  But I can’t.  I have.  I will never again.  I didn’t know about concussions or PCS.  I guess I didn’t think of it.  Friends of mine ask me if they should let their child compete.  I cannot answer that.  Jaden gained so much from competition and I would not trade the person he has become from what he learned and experienced.  But I do have an answer for the parents out there wondering.  You can’t live your life by wondering what may happen.  But you can live your life by knowing the dangers and what to look for.  Just be aware.  More and more people are becoming aware of the dangers of concussions and the life changing condition known as Post Concussion Syndrome.  I have witnessed the change in the 9 months it has been a part of my son’s life.  The more stories that are told, the more awareness that will be made and with that, hopefully, help.  All I want for my child . . . my strong, brave, amazing child is to have his life back; a truly amazing one at that.

So I end this with Jaden’s words.

“I have been going through this for 9 months.  For all of those who have seen me and thought I looked fine, you were wrong.  The outside shows only what you look like but the inside is what you are truly feeling, whether you are hurt or sad.  Post Concussion Syndrome sucks.  The only safe place is in a dark room, completely black.  The outside feels unsafe.  The light is too bright and everything is overwhelming.  You get used to staying inside, in your dark space.  The more you stay inside, the more you get used to it.  And then you go outside, and it is too much.  It was tough for me because everyday, I thought today was the day that I would be able to do more and feel okay.  But it never came.  It still hasn’t come.  That is why PCS is frustrating.

For those kids out there, that have PCS, remember, it does not define you.  It is only part of you.  You will recover from this.  I will recover from this.  Because I want more.  My parents want more.  Every doctor adds something more.  If they don’t, walk away.  Find someone else.  Don’t give up.  I haven’t.  I have too much to do with my life.”

And then, I asked him, did I do you justice with your story?

“You did great Mom.”

4 thoughts on “Joanne Stankos, Mother of Twelve Year Old Taekwondo Black Belt Jaden, Tells “Jaden’s Story”

  1. Tiny Design Studio

    Jo and Jaden, this is an incredible story. I had no idea about PCS and am now educated and aware. Jaden, I know your mom and she is one of the most amazing people to ever walk on the Earth. I haven’t met you yet, but hope to someday meet the incredible person that you are, and I thank you for showing me how to be strong in the face of adversity. xoxo Melissa Bauer (Marietta, Georgia)

    Reply
  2. Jo

    This is such an amazing story Jaden! You and your mom are two of the most amazing people I’ve ever met and I’m very proud to call you my friends! Love you both. Stay strong Jaden!

    Reply
  3. joanne stankos

    I am truly humbled by the outpouring of support. Sharing his story in such a way is the only way I could do him justice and allow his voice to be heard. My hope is that Jaden’s Story will bring about more awareness, change and hope for those that continue to struggle and that will follow.

    Reply

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