Building Ben’s Brain – November 22, 2019
© Article, images, videos and all other material courtesy of buildingbensbrain.com
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 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…
© Article, images, videos and all other material courtesy of buildingbensbrain.com