Hard Times

I generally only blog about the good times or exciting new things that Hayden and Ruby are doing.  I never want to discourage anyone or have people feel "sorry" for me.  The truth is I am feeling a bit discouraged myself right now.  Throughout Hayden's journey out of autism and healing there have been many ups and downs.  For the past 18 months we have pretty much only experience ups.  We might have an off day here or there but for the most part Hayden is doing well and gaining new skills.

Hayden started all day school 5 days a week almost 5 weeks ago.  This has hit him hard.  He is not doing well at school.  He is having outbursts, sensory seeking behaviors, not doing work, and being disrespectful to his teachers and peers.  I can't even put into words how hard it is for me to watch this behavior.  Hayden is autistic again and it is like a knife has been stabbed straight through my heart.  This is the third time in his life that I have watched my son regress and lose skills.  Each time is harder and more heartbreaking.

I am really not sure what to do.  I am working with his teachers on a new work plan for Hayden.  Starting next week Hayden is not going to go to school on Wednesdays and will stay home with me.  I also scheduled another round of hyperbaric oxygen therapy treatments the end of this month.  The only things that have changed for Hayden is school and we have updated paint and carpet in our home.

I am not seeing these behaviors at home like they are at school.  Hayden totally rocked his first martial arts class and was completely into it.

If you have an extra prayer, positive vibes, words of encouragement, or positive energy to send my little man and all the other children faced with autism I will take it.

Brandi

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

Happy 5th Birthday Ruby Kay!!!

Dear Ruby Kay,

I can't hardly believe that you are turning 5 years old in a few short hours.  You have brought everything pinky, sparkly, and girly into my life.  I am happy, grateful, and a little sad today that my sweet princess is 5 years old already.  It's hard to believe you were once my chunky little baby that's favorite activity was eating.

You continue to grow and learn on a daily basis.  Your current favorite color is rainbow, you favorite food is snacks that Grammie gives you, and your favorite person is Mommy.

You love mermaids and have spent a lot of time this past summer being a mermaid.  My favorite is when you told me that mermaid did not wear bottoms and you determined to only swim in your swim top.  I let you.  After all we were are Grammie and Papa's and there was no one else around.  Later on you got to meet a mermaid at the aquarium and she told you the mermaids wear bottoms.

You are one determined little girl that knows exactly what she wants, when she wants it, and how she wants it.  I love this about you.  It does making things and times a bit more challenging but I know and see daily that you are getting that there is a time and place for this type of behavior.  You are for sure a leader and star of the show.

You love to go to the library dressed in your princess gowns and tell people that your name is Snow White if you are wearing a Snow White gown.

You love to help Mommy in the kitchen and to be the official taste tester.  You also love going with Daddy and being his assistant landlord.  Assistant landlords often get perks of donuts and cookies.

Your best friend right now is Hayden.  You two have such an incredible bond.  You also can fight like cats and dogs.  You have gotten him to play dress up a few times.

You played basketball this year.  When you found out that the other kids would not stop what they were doing to watch you dribble and shoot you decided basketball was not for you.  You spent most of the games and practices on the bench with Mommy or Daddy.  You did not like it and asked not to play again.  You also played tee ball.  You like tee ball a bit more and said you would like to play again next year.  You really want to do gymnastics.  Mommy really wants you to do ballet.  You will be doing gymnastics and Mommy is hoping that you will want to do ballet one day soon :)  Until then I will continue to love seeing you dress up in my old ballet costumes.

You started school at Oak Farm your 4th year of life half day and recently have started full day.  You love school and all that you do there. You bring maps home daily that you make.  You love to garden with Sandy at school and often tell me stories of how the little boys in your class call you "poop butt".  This morning I observed you putting the dishes away from the dish washer and folding laundry at school.  It made me smile.  I am so proud of you!!!  I love seeing you out in the world doing your own thing.

I often get reports back from those that watch you or spend time with you that you are such a sweet, caring, and helpful little girl.  I love hearing this as you usually show Mommy your "mean girl attitude" at home.

You love to play princesses with Grammie and chase PaPa with the fly swatter.

I am excited to see what the world has in store for you!!!  Whatever it is Mommy has got your back and will be cheering you on all the way!!!  Happy 5th Birthday my sweet and sassy princess, Ruby Kay :) :)  I am so proud to be your Mommy!

Love,

Mommy

You ate most of your first birthday cake with a spoon :)

You sucked your fingers and held your burpie shorty after you were born.  You still suck your fingers and hold your burpie at bedtime.

If there is a veggie tray you are never far away

I always loved the mohawk you had as a baby :)

Coming home from the hospital