Life with holoprosencephaly
We put Nathan in the crawler.
We lowered to make it more like he’s crawling than just kicking.
He looked up and saw the door, and started running towards it.
He moved with great precision and purpose and reached the door to the outside world.
Once outside he ran towards the car. Time to go daddy! He was so proud of himself.
Time to start locking our doors!
Having a child with severe special needs is a little bit like receiving something like this:
At first you don’t even know how/where to start figuring out how to help your child.
Our puzzle contains pieces in all areas of development – sensory, cognitive, communication, physical, equipment, accessibility, medical, etc etc
I confess that today, I finally feel that we are starting to figure out how to put all the pieces together to form a cohesive picture – a healthy, happy Nathan who is living to the max and receiving all of the opportunities that we can offer him. Here is what our puzzle is looking like:
Anat Baniel Method
Creates brain maps for movement and association of body parts.
Having neural maps for movement and being able to feel his body parts and how to make them work together enhances Nathan’s able to integrate and use CME.
CME
Teaches the brain to fight gravity and helps strengthen physical and neural connections for movement and being upright.
But in order to gain the ability to fight gravity he needs the body to be strong enough to support him. Muscles are very expensive and the brain sends them the wrong signals. This is where ABR comes in.
ABR
Releases and strengthens the myofascia and deep connective tissue, which preserves structure and enables function
For example, strengthening the myofascia and connective tissue in the chest enhances helps with trunk control and respiration, which in turn improves oxygenation of the brain.
HBOT
Oxygenation of the brain helps to feed the body’s cells and to wake up dormant cells as well as improve the function of existing cells.
If the cells are being “fed” rich oxygen and they can absorb it better, the brain will experience enhanced function. Now that the brain is receiving more oxygen, it also needs to receive the proper nutrients.
G-therapy
Stimulates neurotransmitters and acts as a nerve growth factor
Now the brain is receiving both oxygen and rich nutrients to enhance its development.
Reflex integration
If infant reflexes are retained, they can disturb some or all of the functions of highre brain centers, including behavior, learning and the integration of gross or fine motor movements.
Now that the brain is receiving all of the proper information (ABM and CME), as well as being “fed” the proper nutrients and oxygenation, it needs help removing the “obstacles” that keep it stuck in useless loops (infant reflexes). Integrating these reflexes is essential to free the child to learn and experience voluntary movements.
Cold Laser Therapy
The light and waves of the laser penetrate the body and feed the mitochondria, as well as helps the cells to duplicate without cell memory.
Since the cells are being fed all the proper messages through ABM, CME and reflex integration, the “clean slate” cells can then function properly as they have no memory of “damaged” functions.
GFCF Diet
The gluten free casein free diet keeps his immune system functioning optimally, which frees up energy so the body can focus on development, not on fighting allergies or infections.
Supplements
Having a healthy balanced immune system enables the body to absorb nutrients which in turn enhance central nervous system development. Key supplements are fish oils which enhance brain development, as well as B vitamins and others.
Putting the puzzle together
These are the key pieces of Nathan’s puzzle. Now the question is, how do they come together?
In the mornings he goes to school, and works on:
Floor time to get him to move on his own, communication with his yes/no buttons, soon they will also work with him on the dynavox, time in the pony gait trainer, cognitive goals, social goals.
In the afternoons, this is his home program:
 |
| From Random |
Every 3rd week, the 1pm activity is replaced by an hour of Anat Baniel Method therapy. He does 1 week on, 2 weeks off.
After 6pm he goes out with his dad to ride his trycicle which he loves, to go swimming, to go to the movies or mall or the store, etc. That’s his “relax” time. And on weekends … well … we do almost nothing therapeutic, other than love and chill therapy 🙂
And my goal is to STICK TO THIS PLAN. We have explored enough, we now know what works and what doesn’t, and I believe this is what we need to do. Now, time for consistent hard work 🙂
Since Nathan was little, we always played a game at the pool. I would pull him out to the edge of the pool, ask him to stand up, and when he stood, I would have him “jump” to the water. Today while we were at the pool I noticed something thoroughly depressing. He can no longer put both feet flat on the floor. His hippotherapist also told me on Friday that she is noticing mild scoliosis – he locks his left knee when he tries to stand, which makes his back tilt to the left. Recently I also noticed that he’s scissoring even when at rest, and that his foot is starting to look deformed. Basically, his body is starting to deteriorate and he’s starting to have a myriad of orthopedic problems. All the signs are there. I can ignore this no longer. It’s rapidly becoming an ISSUE.
My conclusion – it’s time to stop futzing around and time to get serious about ABR. I’ve talked about ABR in this blog. It’s one of my favorite therapies. But one that I have just never dedicated much time to.
Why? Because it’s so slow. Because it’s so subtle. Because I can’t SEE what’s going on. Because it’s very time consuming. Because it requires patience and that is my biggest deficit.
But lately I have come to understand many things. For example, the fact that ABR works by feeding energy to the cells. The fact that ABR bypasses the brain so, even with a damaged brain, it can help the child. I never thought I’d say that as I always wanted to do therapies that helped the brain. But now we are shifting gears and the fact that we CAN bypass the brain is a major benefit.
A couple of months ago I spoke with Leonid Bylum, the genius behind ABR, and he has been giving me more information on how and why ABR works. He even sent me a video specifically addressing the reasons for Nathan’s lack of head control from a structural point of view. So about 2 months ago we started the ABR challenge.
The ABR Challenge
I told Leonid that if he was so confident that his method could help Nathan gain control, why don’t we set up a “test”. He gave us a series of exercises to do, and a certain amount of time for each exercise. He said that after 50 hours of 4 specific exercises, Nathan should have better head control. So we started about 2 months ago, doing 1.5 hours on weekdays. We are now close to finishing our first exercise and 50 hours.
The verdict?
It works. ABR works. As subtle, as gentle at it is – it has a profound impact on the child’s body. We started with an exercise on the front of Nathan’s neck. I’ve noticed that he DOES have better anterior neck control – his head doesn’t flop forwards as much. We haven’t worked on the sides or back so he’s just as floppy in those directions. But the part that we’ve worked on – the front – is stronger, more defined, more controlled.
The Real Truth about ABR?
It works. I have long and hard resisted this truth. I didn’t want to have to spend 3 hours a day doing manual passive exercises on Nathan. I wanted ACTIVE exercise where I could SEE what is going on. But the reality is that Nathan’s structure is starting to suffer and unless we work on his structure, he will have to experience many painful surgical interventions.
All of the children that have been doing ABR that I have been following for the past 1.5 years have experienced structural, and functional, changes. All of them.
It’s time.
ABR is going to become a focus for us. An integral part of Nathan’s rehabilitation. Will it lead to functional changes? I hope so, but that is no longer my expectation for ABR. My goal is to help preserve Nathan’s structure to minimize painful surgical interventions. If Nathan also experiences functional changes, we will wholeheartedly welcome them.
So it’s official for me: ABR works, and is essential for Mr. Nathan. Time to buckle down and get to work.
