Loving him is easy, Autism is hard

Loving him is easy, autism is hard. There are no easy solutions and in our instantaneous culture that is a bitter pill to swallow. I want him talking. I want him sleeping. I want him playing with his siblings. I want him reading. I want him laughing and telling jokes. I want him sitting at the dinner table telling us about his day. I want us to run errands without a meltdown. I want to go to a movie or to church and I not have to strategize an emergency exit, due to disruptive behaviors.

Often parenting a special needs kid is double or triple the work and it is never ending. It’s continual. It’s unyielding. It’s constant. It’s endless. It’s perpetual. It’s relentless. Severe autism is a complex, perplexing condition and you got to be on your “A” game at all times, because the distorted behaviors are never ending and if you don’t stay on top of things…you soon are left with a big mess.

Ben used to waste so much paper. If he made a mistake he couldn’t use the back side or cut the paper in half. It had to be a completely new sheet of paper.

Now, there have been far worse messes than this pile of papers. I could have taken a picture of the time he smashed a watermelon on the floor and sat on the couch eating the watermelon like a wild raccoon. I could have taken a picture of him eloping from his bedroom window at 10:30pm, so he could go to the neighbor’s to play on their iPad. I could have taken a picture of him darting out into traffic. I could have taken the picture of the time he dumped the entire bag of cereal on my bed and rolled his body over it.  I could have taken a picture of him using high pitched noises while pacing back ‘n forth for hours and hours. I could have taken a picture of him, getting out of a public pool, pulling down his pants and peeing directly in the pool full of people swimming. To make matters even more concerning, all those events was when Ben couldn’t verbally communicate. He was so impulsive and very unpredictable. So when someone says to me, “You are such a great mom. There are so many moms who just don’t care.” I think that statement is very unfair. I think a better statement is…There are so many moms that are very overwhelmed and don’t know what to do. The amount of work involved and the lack of education regarding brain development is staggering.

Parents aren’t educated about brain development. Parents heavily rely on outsourced help and over time, especially if goals aren’t getting achieved, parents feel powerless and defeated.

The medical system is set up for parents to sit on the sidelines and watch. Parents do the paperwork. Parents manage the scheduling of appointments and administering of supplements and medicines. Parents are also responsible for the sleep schedules, nutrition, the home environment…typical parent responsibilities, but there is this huge caveat. Your kid isn’t “typical”. Your job as a parent isn’t typical. His nutritional needs aren’t typical. His sleeping habits aren’t typical. His messes aren’t typical.

He elopes without a sound or reason. He is indifferent to any kind of discipline used, because his brain can’t remember or process much of what you say or expect from him. Special needs parents are often frozen in time and simply survive or fail completely on their own efforts.

I don’t blame the parents who are just going through the motions. I was once that parent. In 2014, I can remember sitting through an IEP meeting and just thinking, “If these therapists and teachers can’t get my kid to behave or learn, how can I? I mean we have been doing therapies for 9 years and I’m busting my butt, but his behaviors aren’t improving and he is only getting older. He is 11 years old. He is addicted to that iPad. He has zero internal motivation. We have been conditioned to bribe him with a reward to get him to do the simplest of things. It’s quite exhausting and nothing is improving.

I often think of the bible story of some of the disciples spending all night fishing. The disciples were exhausted, hungry, and defeated come morning. They had been fishing all night and had nothing to show for all their efforts. Jesus stands on the shore, but the disciples do not realize that it was Jesus. He calls out to them, “Friends, haven’t you any fish?” “No”, they answered. He said, “Throw your net on the right side of the boat and you will find some.” John 21:6

Can you imagine what the disciples were thinking. They have been fishing all night and somehow if they throw the net on the right side of the boat there will be fish? Can you imagine how annoyed, combative, and argumentative the disciples must have been, but when they do as they were told, they were unable to haul the net in, because of the large amount of fish! There were so many fish that the other disciples came towards the boat to help. Even with all those fish, the net didn’t break.

If you are a special needs parent and your “net” is empty, it’s time to throw your net out on the right side of the boat. God wants to fill your net, but perhaps he wants you to take a more active role, to reach outside your comfort zone, to trust, and as the net fills up, your teachers, aides, therapists, family, and friends all come to help and pull the net in, and no matter the amount of responsibilities the net won’t break. God will equip you.

I can think of nothing more, that would please God, than for a family and the community to rally behind a person who has a hurt brain and follow God’s design of brain development. So, what is God’s design and why haven’t we heard about this clinic or programs?

Perhaps you haven’t heard about The Family Hope Center because it has such a very unique approach and doesn’t align completely with conventional medicine. Conventional medicine’s current stance is to manage and cope. Conventional medicine wants to be efficient and get you in and out of the office in a timely manner. A parent can’t be educated within those time restraints. Parents need more empowerment. We need more guidance in how to set up a home environment to stimulate and nourish the brain. The Family Hope Center provides that service, you can research more about it. https://www.familyhopecenter.com

A very important difference from Family Hope and conventional medicine is the focus on physiological growth to wellness. We have to get our kid’s physiology at its best, which requires getting oxygen to the brain throughout the day, utilizing nutrient dense foods, and calming the sensory pathways. It also requires organizing the lower brain via crawling on the belly and creeping on the hands and knees. These movements develop the auditory and language pathways. It develops the ability to understand abstract concepts such a time, space, and sequence.

My son would have many meltdowns, because he couldn’t understand the concept of time. For example, He might see a swimming pool on TV and make a noise inferring he wanted to go swimming. I would say, tomorrow we could go, but Ben couldn’t understand what tomorrow meant. He couldn’t understand the concept of time, so usually a meltdown would follow. The concept of time was too abstract and that is why calendars and timers are so helpful for ASD kids. The calendar or timer provides a visual rather than relying on his pons and midbrain within his brain stem to function properly.

When the brain is organized, it can create, empathize, love, build, plan, anticipate, etc. Developing the brain is surprisingly a concise, systematic, and rewarding experience, because frankly, God is an absolute genius. God has engineered the brain to be rebuilt and you begin by building the brain from the bottom-up. Ben has achieved so many things by following a comprehensive, systematic approach to developing his brain.

Talking, problem-solving, listening, following directions are extremely challenging when a brain is hurt. One of my main concerns was Ben’s lack of internal motivation. Which is the motivation to look nice, have a clean shirt, take a shower, tie your shoes, etc. I wanted Ben to want that for himself, not for a token or a reward. Slowly but surely, bit by bit all of those goals were achieved because we improved Ben’s physiology and had a comprehensive plan to develop the brain.

(The next few blog posts I will go into more detail on how Ben’s programs improve his physiology. Each blog post will explain a bit on his respiratory, nutrition, sensory, and brain organizing programs, and their role in developing the brain.)

Building Ben’s Brain

For 18 years, I’ve been a parent.  For 16 years, I’ve been a special needs parent to a son with severe autism.  I’ve seen a lot and have done many different therapies and approaches.  Some were effective and others were not.  Autism is a strange beast, in that there are multiple variables compromising the brain’s ability to develop.  Even with early intervention therapies and 9 years of continuous therapies, we still had a son whose brain was stuck at a 2-3 year old level.

Because of my experience in multiple therapies, I have decided to write a blog documenting my family’s journey, titled “Building Ben’s Brain” to create awareness about a international clinic in Philadelphia, PA that has completely restored my faith in family, hope, and the body’s innate ability to heal.  Below is a picture of Ben age 10 and his 3 siblings.  The second picture is of Ben after 3 years of a comprehensive neurological based program, age 15 with his siblings.

First picture: ages 12, 10, 8, & 5.
Second picture: ages 10, 13, 15, 16

I’m a mother of four kids and in 2006, my son starting receiving early intervention services for severe autism at age 2.5 years old.  I’m quite familiar with micromanaging medications and supplements, scheduling doctors and therapy appointments, the hiring and firing of school administrative staff, teachers, therapists, case managers, respite help, etc.  There is quite an entourage that you collect with a special needs kiddo.

Sure, we had coping strategies and were managing, but it was a constant uphill battle.  I knew there was more.  Because when I looked into his eyes, there were many times a vacant stare, but then there were other times, there was this spark.  The spark would rapidly fade and I would question if it was my imagination, but no matter…I wanted that spark to ignite! 

At 11 years old, was still biting holes in his shirts, pulling elastic from his socks, using echolalia to communicate, and exhibiting self-injurious behaviors daily.

I knew in my heart that my son was intelligent, creative, and loving, but his brain was so hurt that the messages got mixed up and often frustrated feelings and indifference was exhibited day in and day out, and well into the night.  (Ben typically slept only 4-5 hours/night.)  I needed an experienced team of professionals, who understood brain development and had achieved success after success at getting brains to develop no matter the seriousness of the condition.

Just look at the difference from 2016 to 2017!  You see it!  I know you see the spark.  We all see the spark.  What changed?  Why such a profound change in brain development as a teenager with a comprehensive neurological program and not when he was a toddler and a child using early intervention and weekly OT, PT, speech, and behavioral therapies?  The difference is in the scientific evidence-based approach and the advantage of having an educated, empowered parent.  It’s time to rethink medicine.  It’s time for universities to change how they teach about brain development to educators and medical professionals.  It is time for insurance companies and professionals to recognize how valuable it is to educate parents about brain development and support a comprehensive neurological program at home and at school.

I share our story in hopes professionals or parents will be curious and want to learn more and push for change.  As a family, we were living with severe autism and each year from the time of early intervention and on, more and more bizarre, autistic behaviors emerged. 

Self-biting was off the charts by age 10.  Ben bit his hand if happy, sad, mad, or bored.  His teeth were shifting and his skin was so bruised!  Therapists and teachers relied on chewy tubes, social stories, positive reinforcement, medication, but nothing worked.

My son was struggling in every way emotionally, physiologically, academically, socially, etc.  Because of my past experiences with therapists and teachers with the best of intentions, and medication promises that produced little independence.  I was ready to team up with a staff of professionals to teach ME how to set up an evidence-based comprehensive neurological program at home.  I was tired of bizarre obsessions like bringing DVD cases to every event, not enjoying public places, extreme meltdowns, echolalia, and zero internal motivation.

We were at Disney World and Ben had to bring his DVD cases, he had to be in a wheelchair because it was easier to keep him out of people's space and wait. He was overstimulated and indifferent to all the excitement and fun. We were constantly bribing or begging for him to be calm, to enjoy it.

I was tired of coping and never getting any measurable results!  I would ask God, “Am I crazy?  I know there is more!  I’m so sick of managing behaviors and never gaining any independence.”

God knows there is more and God has always had a plan from the start.  Brains can get hurt before, during or after birth and brains can get better, because God engineered a systematic approach for the brain to heal.

God created the brain to be resilient, and God doesn’t stipulate restrictions on what age or labels or diagnoses that healing can occur for.  Healing can occur at any age and for whatever the diagnosis.  Now, I don’t know if my son’s brain will ever catch up to his peers, but without a doubt I have evidence below that the brain can heal and God will equip you.

It takes time, faith, respect for God’s design/creations, and a paradigm shifting team of professionals to empower parents and revolutionize brain development!  As I’ve said at the beginning of this post.  I’ve tried many therapies.  I needed a comprehensive approach.  I needed to get all the puzzle pieces and be empowered and educated.  God wants families, schools, and communities involved in the healing process.  To rally behind the injured, and believe that God designed our bodies and brains to be restored.   I needed a team of professionals with the skill set and the experience to empower and educate my family in how to provide the environment necessary for brain growth/development.

The first step was to attend a 3 day Parent Training Conference offered by The Family Hope Center to learn their approach and if it would align with our goals.

The conference was absolutely amazing!  Parents from all over the world were there.  Translators were in the back translating via headsets, while everyone witnessed all around that even though our languages or cultures were different, the love and intuition of a parent is universal and so very powerful.  Below are some pictures of Ben’s accomplishments following the training conference and the last 5 years partnering with the Family Hope Center.

Prior to Family Hope Center, Ben couldn’t smile, but as we implemented the programs and developed his cranial nerves around his mouth and developed his brain, his ability to smile emerged!  The bottom picture is Ben smiling at age 16. 

At age 16, Ben started to write, create, draw, and understand emotions with ease!

Our family is forever grateful to the educational/medical team from Family Hope Center. My son and family is witnessing how God has engineered the brain to be restored and the family and the community is essential in the process.  We have been with the team for 5 years.  Our first evaluation was Nov 2014, my son was 11, and was evaluated as having 35% brain function and was severely on the autism spectrum.  We decided to travel 1-2 times per year to meet with the team and are in regular contact with the team via email, Skype, zoom, or phone.  Below, is the highlight reel of the achievements we have made.  (I promise in future posts, I will share struggles.)

After 9 months of the program, my son was riding a bike and reading at age 12.5 years old.

At age 14, Ben started drawing and creating art.

At age 15, Ben started understanding emotions and expressing his feelings. In the past, Ben had used only echolalia to communicate. Echolalia is the use of unsolicited sounds. So, Ben would repeat phrases or make sounds, but couldn’t respond back with an appropriate answer.

Ben and I had been working hard for the last 4 years and we had started to discuss and learn about feelings. Ben could have written very generic feelings when I asked him to answer my question. I had no idea how he was going to respond. To be honest, I thought he wouldn’t be able to come up with 4 descriptive words for himself and me, but to my amazement, he did!

Can you imagine how surprised and shocked I was as he wrote down without any hesitation his thoughts. For so many years, I have wondered or questioned, “does he pay attention, does he care?” When I read how he described me, I slowly started to realize that he does pay attention and he does care! He described his mom as tired and he is absolutely correct. I’m tired. He described me as curious. He sees me asking doctors, therapists, and teachers questions. He sees me reading all kinds of books or researching on the computer. He described me as proud and amazed and those two words mean the world to me. In a world that consistently points out what isn’t developing, Ben knows his mother is amazed by his laugh, his smile, his art, his writing, and he knows that I’m so very, very proud. I absolutely treasure this piece of paper. This piece of paper proves that special needs kids and adults definitely pay attention and care, but their brain isn’t organized enough to communicate it, but fortunately there are ways to restore or organize the brain, so communication becomes easier.

At age 16, Ben is writing stories, playing Special Olympics basketball, reading graphic novels, training for a 5K, balancing a checkbook, doing chores, and participating a church.

We can go on vacation and Ben enjoys getting his picture taken. Ben absolutely hated having his picture taken. His brain couldn’t allow him to be still, to smile, or to look at the camera. I absolutely love this picture!

Ben still has many challenges. At our last evaluation, Ben was measured at 50% brain function. We started 5 years ago. In 5 years we have gone from 35% brain function to 50% brain function. We started this comprehensive neurological program at having absolutely zero ability to do self care, write, comprehend, follow a one step request. Now, Ben has mastered getting himself ready for the day. He wakes himself up, showers, gets dressed, ties his shoes, eats his breakfast, brushes his teeth and has his coat, backpack, and headphones on and out the door at 7:50am. We don’t need a schedule, he doesn’t need me to prompt him. His brain understands what is expected and he has the internal motivation to do the work. We as a family have dreamed of Ben having this type of independence for years and at one time, had almost given up. Know it is never too late. The brain is truly resilient and so are families. Be empowered!

To find out more about the team of professionals we partner with…http://www.familyhopecenter.com