A letter to our insurance company……………...

To Whom this may concern:

I am the mother of an amazing seven year old little boy, named Hayden James Hicks.  This little boy has overcome more in 5.5 years than most do in a lifetime.  My son was born a healthy little boy weighing 8 lbs 6 oz and 21 inches long.  He met all milestones early /  or right on time.   He said his first word at 3 months of age, Mom.  Most people were is disbelief that he could say the word Mom and were in shock to hear such a little baby “speaking”.

Hayden was always adventurous and “nosey” wanting to know and see what was going on.  He loved to cuddle with me, he loved to look at books with me often pointing to pictures on the pages.  Hayden was a good sleeper.  He started sleeping through the night at 8 weeks of age and took 2-3 naps a day.

I felt good about being a parent and making the “right” choices for my child.  I waited to have children until I was in a solid relationship and had a secure job and home for my future children.  I listened to my pediatrician for guidance about medication, nutrition, and vaccinations.  I followed the pediatricians recommendations about all of those things.

I was a proud parent.  Every well child visit Hayden was 90% for height, weight, and was meeting all milestones.  

All of that changed drastically.  At 18 months of age Hayden received the MMR and flu shot vaccine at his well visit appointment.  He was hospitalized the next day in the pediatric intensive care unit.  He was extremely sick.  He laid there lifeless, he had a blank expression, and was fighting for every single breath.  Hayden was very close to being placed on a mechanical ventilator.  He remained hospitalized for the next 6 days.  He was diagnosed with asthma / pneumonia.  

Three days after the MMR and flu shot Hayden spoke his last word (which was Mom).  I remember clearly him laying there in his hospital bed and how pitiful he sounded when he said it.

When we got home from the hospital Hayden seemed very different.  I thought it was from all the steroids, breathing treatments, and antibiotics.  I thought he just needed time to “heal”.  He no longer wanted to be touched and he did a lot of screaming.

Hayden pretty much stopped sleeping at this point.  I was lucky if he would sleep two hours solid day or night.  He was screaming 90% of the day or night.  His pediatrician didn’t believe me but told me to give him melatonin.

Hayden also started lining up cars in a straight perfectly organized row.  He stopped responding to his name.  In fact he stopped responding to everything.  He never acknowledged when we walked into a room.  He didn’t listen when we said “no” anymore.

I went back to the pediatrician and expressed my concerns.  I asked about having First Steps evaluate him.  She didn’t agree with my but signed the form for the evaluation anyway.

Development with Hayden downward spiraled quickly.  He stopped coloring, he stopped talking, he stopped babbling, and the most heartbreaking of all didn’t tolerate me touching him.

I noticed that he became sensitive to light, sound, and texture.  He often would gag on food and vomit.  He became a very picky eater and stopped using utensils.

First Steps came and evaluated Hayden and he qualified for occupational therapy, speech therapy, and developmental therapy.  They suggested I read the book “The Out of Sync Child”.  I read the book and it summed up my child. I thought Hayden just had some sensory issues at this point.

Hayden continued to “leave us”.  He started to only have on expression.  That expression was blank, flat, and lifeless.   Hayden was in constant movement all the time now.  Unable to sit and attend to a task unless it was lining up his cars.

He started hand flapping and watching in his peripheral vision, spinning, running and jumping into everything.  He lost his sense of danger. Hayden would climb on our kitchen counters and jump straight off.  He got the kitchen knifes and I found him throwing them.

I was on that child 24/7 doing my best to keep him safe.  I was pregnant and also working part time.  I didn’t sleep because Hayden didn’t sleep.  I often didn’t eat because I couldn’t leave Hayden un-attended.

When Hayden turned two I knew there was something much more wrong then just sensory issues.  I had come to terms that he was autistic.  I thought he had a mild case.  I perused getting him evaluated.

When I received the results of his evaluation I was told that Hayden had severe autism.  I was told that he would probably never talk, never have friends, need medicated, and would probably need to live in a group home.  I asked what I could do to help him.  I was told that therapy might help him and medications would help control his behavior.  I asked about changing his diet (I had already started researching at this point).  I was told that he would starve.

On that day I decided that Hayden was not born with autism and that he was not going to die with autism.  When I found out that I pregnant with Hayden I prayed to God to please let this baby live (I had a miscarriage previously) and no matter what illness or challenges this child could have I would love him/her unconditionally and do my absolute best to give that child a good life.

That is what I have done.  I have loved my son every single day for the person that he is.  I have NEVER and will NEVER give up hope on him.  I went home from the doctors appointment and continued my research and networking to help my son.  It’s hard to believe that was almost 5 years ago!  At that point in time Hayden lost all skills, communication, fine motor, coping, etc.

Where are we now??  Hayden now speaks in full sentences, has friends, goes to a typical Montessori School by himself, plays basketball, plays non stop with his sister, eats a well rounded diet, is learning to read and write, and has such a love for life.  He smiles non stop, he is compassionate, and loves for me to hold him.

Our journey was not easy.  I choose a path for my child and family that is not traditional and not covered by insurance.  I have spent $100,000.00 + in out of pocket medical expenses the last 5 years.   Our retirement is gone, savings gone, ability  to live comfortably and not worry about bills......GONE.

I have worked my buns off helping heal my child.  He eats no processed foods, he consumes no chemicals.  I ran a home based therapy program where he received 60 hours a week of one to one therapy. We did hyperbaric oxygen therapy treatment, and countless holistic remedies.

It was worth every single penny and once of sweat that went into it.  I wish that I never had to go through what I did with my son.  In fact I wish no one has to go through what we did.  However, I am 100% grateful for what I have learned.

Hayden is left with low tone in his upper extremities and struggles with fine motor activities.  Handwriting is hard for him.  Buttoning, zipping, snapping are hard for him.  This is where occupational therapy is helping him.  Hayden is making progress.  It’s documented progress.  He is gaining strength.  The bummer about this is that we switched insurance companies in July and now Lutheran Preferred will not cover his therapy because they do not see his need for therapy as something that is treatable or from the result of a critical injury.

That is where you are dead wrong.  My son was injured.  My son was “normal” and typically developing.  He was then injured by the MMR and flu shot vaccination.

I don’s use and abuse our health insurance like many other do.  When my kids are sick I keep them home, keep them hydrated, make them bone broth, and make them rest.  I don’t run to the doctor or ER for every little illness.  I don’t give my kids pharmaceuticals.  

What I am asking you to do is cover my son’s Occupational Therapy.  

Brandi Hicks