Brandon Hilton Kuehn's Story

Dear Friends,

Thank you for allowing me — along with my husband Norman, and my son Brandon — to share our story with you. We hope to convey many thoughts from our heart but most of all to remind everyone that we are all Gifts from God.  We hope our story encourages those families that have had a child diagnosed with a chronic illness or developmental challenge.  You get a very special way of looking at your child.  You get to relish over the little things that most parents take for granted like walking, eating, sitting up, and communicating.  Your child is a gift from God!  Appreciate their strengths, do not dwell on their weaknesses, and don’t ever forget to take time to just enjoy them!  By the same token, keep striving to help them become the best they can be.  Do not give up!

 

Additionally, we hope to humble families that have a typical developing child. Appreciate their strengths and do not dwell on their weaknesses. Take a moment to recognize all the little stuff just as much as the big stuff and do not take for granted the typical milestones. Enjoy your children! Take time to just enjoy them!

 

Many Blessings, Melisa, Norman and Brandon Kuehn

The Kuehns
Great Expectations

Brandon as a BabyI had a great pregnancy. I did everything I was supposed to do while pregnant.  I ate correctly, took supplements, exercised and rested accordingly.  We even had additional testing done prior to conceiving due to health concerns from extended family members.  All the research and testing indicated no health deficiencies. As a matter of fact, we were told we had a prime environment for having a healthy child; more specifically, a healthy boy.

 

On November 20, Brandon began considering visiting us, so we headed to the hospital where we waited an intense 30 hours.  Finally, after preparing for a caesarean birth, Brandon graced us with his presence at about 11:56pm on November 21, 1996. He weighed a healthy 8 lbs, 6 oz, was 21 inches long, and began nursing shortly after his birth.

The First Signs

Caution TapeA week later, Brandon and I both experienced a yeast infection anti-fungal-med.  For him it manifested itself as thrush, which was a white coating on his tongue and in his mouth. For myself, it was mastitis in my breast which caused it to ache and gave me a very high fever.  The physician recommended Nystatin for Brandon and some ointment for me.  Nothing else said about it.  A few months later, we started introducing solids (i.e… yogurt, milk products, etc) instantly he had an onset of ear infections which were treated with several rounds of antibiotics.  Although he suffered from minor colds and many ear infections, Brandon was still pretty healthy and thriving in growth and maturation as measured by the standard developmental milestones published in physician’s offices and many books.  As a matter of fact, Brandon met many milestones ahead of schedule.

Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate.
Psalm 127:3-5

Devastating News

heartBecause Brandon had about five or six ear infections by the time he was 15 months old, and his speech had declined, he had to have PE Tubes placed in his ears.  The ENT told us after the surgery that Brandon’s inner ear looked like mush and had the consistency of pudding, which he explained was why Brandon’s hearing had diminished, affecting his speech.  It seemed like a plausible explanation.

 

After Brandon got back on his feet, his pediatrician sent us to a Developmental Specialist to help restore Brandon’s speech.  On July 27th 1998 our life officially changed … FOREVER.   After visiting with her for about 15 minutes, the specialist said in a typical conversational tone, “Your son is not deaf but autistic.”

 

All of a sudden I felt like I was in a movie, I could hear the specialist talking but there were pictures flashing across my mind.  Although Brandon was only 18 months old, I saw him graduating from Kindergarten, then a white foggy smoke appeared and the dream of Brandon graduating from Kindergarten faded away.  Then, an image of boy scouts appeared then faded, then a high school graduation, and watching Brandon get married, and have children.  Poof!  It all went away in the blink of an eye.  When I snapped back into reality, the specialist was still explaining the different organizations that were available for us to plug into.

 

I do not remember actually leaving her office but I do remember walking briskly in the garage parking lot.  I was hugging Brandon as if his life counted on it.  I remember thinking; my life was so different just 30 minutes ago.  I started going through scenarios of how I was going to tell my husband, Norman.  He did not come to the appointment because it was just supposed to be a referral for speech therapy.  I called Norman and told him to leave work and come home for lunch. We met at the house.  I was not sure how to tell him.  I still was not sure how to explain it to my own heart, much less to the man I love. How do you tell the father of a beautiful healthy boy that he had just been diagnosed with autism?  How do I explain autism?  I studied psychology in undergraduate school, but autism was only over viewed.  I do not remember the words I used to explain to Norman, I just remember the look on his face.  I literally could see his heart sink.  We wept and hugged then he went back to work.  Later, when he got home, we kneeled in front of the bed, cried, and prayed.

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths.
Proverbs 3:5-6

Walking on a Dark Path

A few days later I had to break the news to Brandon’s pediatrician.  She was shocked.  She had no indication since Brandon had met his milestones and was verbal before the last few ear infections.  He was very social, loved his Gymboree classes, and interacted with everyone in the family.  Truly, he was a little ham.

 

The timing of Brandon’s diagnosis was interesting, never coincidental. The next night happened to be the PDD (Pervasive Developmental Disorder, a nice way to put autism) Parent Support Group meeting.  At this meeting, newbie’s like ourselves had the opportunity to go into another room and receive information regarding autism and the next steps we could take. At the same time, the “veterans” had a discussion group on another topic of interest. It was the first comforting step we had taken since Brandon’s diagnosis.  There were people to help and guide us through this… new journey. The next day I got on the phone and called everyone.  I needed to understand what autism was specifically and how it affects my son and our family. Secondly, I needed to know how to help Brandon.  I was determined not to let any dust fall on my shoes.  The one thing I established from my research and conversations was that early intervention is the key, so I had Brandon involved in therapy within a couple of weeks.

 

Timing again… A few nights later as Norman and I lay in bed staring at the television in despair, a St. Jude’s special came on. The two-hour program was to help raise awareness and money for an organization that assists families with children who had cancer. When Norman and I had started watching the show, we were in despair. During the show, we realized that at least Brandon is not in pain and he is still with us physically. It was our first breath of fresh air since his diagnosis. Yet again…timing. A week later we had an appointment at Texas Children’s Hospital, where Brandon would start occupational therapy. We had to use all our strength just to walk in the front door. We walked in with a dark cloud hanging over our head, dripping dark drops of “your child is autistic.” When we looked around, we saw a seven year old little boy with burns over a major portion of his body. We saw a typical little boy climbing up stairs. We saw a little girl with cerebral palsy who could barely hold her head up sitting in a wheel chair. We saw many more children who humbled us. When we walked into Texas Children’s, we walked in with feelings of dismay, thinking, “Poor us our child has autism.” We realized while watching these other children, that there are some who have far greater challenges than Brandon and some who have less. Nonetheless, this should not be our focus. “How can we help Brandon?” should be our focus. It was our first moment of acceptance and healing.

 

Our next step was to share Brandon’s diagnosis with my immediate family, so I called a family meeting. Everyone was staring at me with this little smirk. They were remembering the last couple of family meetings, each time someone announcing a pregnancy. However, this time it was different. As I started talking, my brother and his wife had huge smiles on their faces, waiting with anticipation. “Brandon has been diagnosed with autism and they say it does not look good,” I said and then watched like a camera going across the room, taking still pictures of the look on each person’s face. The huge smiles and glittering eyes slowly faded into disbelief and shock. I briefly explained what autism was. The once glittering eyes flooded with tears, sorrow, and anguish; then the comforting hugs started. I remember my brother saying enthusiastically, “We will beat it!” I thought to myself, I would be happy to, I am just not sure what autism is. Additionally, the reality was, the more I read the less others really seemed to know about it too. The best reference the “EXPERTS” could give us, was to watch “Rainman.”

 

The “EXPERTS” also told us the best thing we could do for Brandon and ourselves was to place Brandon in an institution, walk away, forget him and go have a healthy child. This was the kind of recommendations the “EXPERTS” gave. Of course, autism was not cool then. It was only 1 and 10,000 children that were diagnosed with autism with a higher ratio in boys. As opposed today, 1 and 60 children being diagnosed with autism.

The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death (or through the darkest valley), I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil, my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.
Psalm 23

Acceptance of Reality

At the time when Brandon was diagnosed, the limited information they did espouse about autism, was autism was a mental illness caused by the mother. Of course, this line of thought has changed through the years. The “EXPERTS” in the medical field were not the only ones with limited information on autism so were therapist and educators. I turned over every stone I could to locate individuals that were at least willing to look or think outside the box or even consider it was not even a box but a circle or even a star.

 

At this point, basically all the normalcy of life stopped and a roller coaster ride began. I read and researched the massive volumes of information out there. I enrolled in workshops and support groups. I traveled from one side of town to the other for therapy, doctor’s appointments, and curriculum programs. I learned about special diets, food allergies, food sensitivities, supplement therapy, chelation therapy, and other approaches to gain optimal health and ways to help my baby.

 

During the vigorous education of holistic medicine, it became clear that there had been so many red flags along the way, but none of them were recognized by allopathic physicians. From the moment Brandon was born, there were many tell-tale signs indicating a weakened immune system, Candida overgrowth, and deficiencies in minerals and vitamins. Nobody said anything. We had no clue. If we had known, we would have implemented a plan of action. It took several years to gather this information and precious time was lost. There were so many things we could have done, but the most important thing was that we started, right or wrong at least we did something!

 

For the next several years Brandon’s schedule resembled something like this: Speech therapy 3 times a week, Oral Motor therapy 3 times a week, Physical Therapy 2 times a week, Occupational Therapy 3 times a week, Sensory Integration therapy 3 times a week; private school in the morning, public school in the afternoon, and anything else I could squeeze in there. That was our new normal. We continued down this path for several years. There were long days and sometimes even longer nights.

God didn’t promise; days without pain, laughter without sorrow, nor sun without rain, but he did promise; strength for the day, comfort for tears & light for the way.

Starting the Recovery Process

When Brandon was first diagnosed we were told he should be put in an institution and that he would probably not be independent and aware of his surroundings.  We used typical modalities such as occupational, physical, speech, sensory integration therapy, and atypical modalities such as oral motor therapy, listening programs, chelation therapy, hyperbaric oxygen therapy, viral therapy, and much more.  We found that early intervention, as well an aggressive holistic approach to building his immune system, and implementing a dietary change was a vital key.  We do not believe the progress is a result of one isolated modality or treatment, but rather a culmination of therapies and treatments that was specifically designed for Brandon.  In addition, we NEVER accepted that Brandon would be anything less than what God designed him to be. As a parent, never accept what other people say.  Allow your child to be everything he was designed to be.

 

family picIn 2004, Brandon turned eight.  This is when I officially opened Hilton’s Heartland.  He was potty trained at four years old and his motor skills have increased ten-fold.  He uses the computer independently, surfs the web, and loves to read.  We were extremely excited to report at 6 years old Brandon started talking.  We were once told, “He will never read, write, communicate, or be productive in society and should be placed in an institution”.  Not only can he read and write but he is also a little chatter box.  We are still working on functional conversation but he is communicating. Oh my … did I mention that I use to pray and dream of hearing him say “mom”?  Well that is all I hear now …mum … mum … mum get up … mum come hear please … mum… mum… mum. I never thought I would entertain the thought, “Brandon, quiet mouth please”.  It is definitely the simple things that bring us to our knees.  When he was first diagnosed, my main goals for him before I died were: (1) be fully toilet trained independently and request restroom when needed; (2) to be able to communicate when he was hungry or thirsty, hurt, or when he was cold or hot, (3) say and spell his name and telephone number (just in case he gets lost), and lastly (4) give some hint that someone may be hurting him. He not only met these goals a long time ago, but continues to amaze me by rising to the occasion and reaching new goals.

 

From 2004 to 2011 (age eight to fifteen) we homeschooled Brandon. The public and private schools simply could not provide what Brandon needed. Every child with autism has different strengths and weakness which demands a unique and integrative program. By homeschooling we could provide these tools and resources. One our most effective tool was NACD, National Association for Child Development. They provided an incredible individualized and integrative homeschool curriculum.

The Next Chapter

This program was amazing and comforting, however, with growth prompts change.  Homeschool allowed me to have pretty much control over well EVERYTHING! But Brandon was doing so well that he really desired more social interaction then his homeschool program at this time could provide so we enrolled him in a life skills high school program in 2011.  The public school worked with us to continue to provide Brandon an individualized and integrative curriculum coupled with social interaction that was age appropriate.  I still remember the look on his face when he saw those high school girls. Eeeek! Putting Brandon in a public high school was terrifying, I guess autism or typical letting go of your child is hard.  When we entered Brandon in high school they were already talking about graduation and what he is going to do after he graduates! Oh my!! One step at a time.

 

I know most of you understand the next sentence.  Now I can die in peace.  Not that I want to die tomorrow but I can, knowing he will be ok.  My main four goals that I felt he needed to move on in life without me, have been achieved.  I know only autism parents and families understand that statement.  I continue to share Brandon’s story with everyone, not to brag, but hopefully to be that one thing that gets a mom, dad, grandparent, teacher, para professional, or therapist through one more day, one more hour, one more minute of helping a special needs child. I know it can be frustrating.  There was much blood shed and tears to reach those goals.  I simply did not give up on him! I know sometimes it may look like we are not getting through to them, but we are.  They are constantly taking everything in.  They may not communicate or look like they are absorbing what we are teaching or communicating, but they are. What you must do first and foremost is NOT give up on them! They can do much more than we can ever fathom.  Only God knows their potential even though we cannot see it right now.  Secondly, I truly believe God created our body to self-heal. Meaning we must give our body the proper tools and resources to aid in the body healing, but it can heal.  Our bodies were designed to survive. We must continue doing what we need to do to help these children’s bodies.  We must strengthen their body’s foundation.  Once the body’s foundation heals, they can start communicating, showing what they learn, and start to really function.  Start to really live.  They cannot do this while their body is so depleted and imbalanced. Instead, they stem, they stare into space, they self-abuse, and throw tantrums.  They are communicating with us … they are saying, “Help, I am in pain.  I am imbalanced and cannot function”.  We must figure out what is imbalanced and correct it.  The difficult part is every single one of them needs a specialized plan of action because each individual is imbalanced differently. Each has their own set of pieces to the puzzle.

 

BHKuehn Graduation 2015Brandon officially graduated with his class at 18 years old. Yes, he walked the stage.  Did he meet the curriculum as his typical peers?  Absolutely not.  This was more of an “I did it!” event.  I was told, “put your child in an institution, he will never talk, read, write, nor be a productive human being”. Well this day, June 4th 2015 Brandon graduated from high school.  The graduation was not just about graduating from high school from a life skills class for Brandon.  It was also a ceremony to celebrate all the accomplishments Brandon has made since his autism diagnosis and getting through his own trial and tribulations.  This graduation was also about the people that helped Brandon succeed thus far. This graduation was about all the people that did NOT give up on him!

 

A year after graduation, we continue to saturate him in therapy, school, and social interaction just as if he was just diagnosed.  I know most individual’s stop therapy as they age; however, I feel (by experience with Brandon and watching others) that when they begin therapy and an integrative program they are only able to absorb a minimal percentage a different times.  The neurosensory system may work at optimal then the systemic not fully able to embrace everything.  As they maturate and recover, at different times their mind, muscles, emotions, and neurosensory system to name a few are just beginning to really But as they recover they are able to absorb the integrative approach more and more.