A little piece of heaven

We had a little Halloween party with Nathan’s buddies! Check out the pics.

Sometimes you have to wonder what is the meaning of having children like Nathan in this world. Stories like this one that a good friend sent me by email make it all make sense:

At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its
dedicated staff, he offered a question:
‘When not interfered with by outside influences, everything nature does, is done with perfection.
Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do.
Where is the natural order of things in my son?’
The audience was stilled by the query.
The father continued. ‘I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.’
Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, ‘Do you think they’ll let me play?’ I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, ‘We’re losing by six runs and the game is in the eighth inning. I guess he can be on our team and we’ll try to put him in to bat in the ninth inning.’
20
Shay struggled over to the team’s bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted.
In the bottom of the eighth inning, Shay’s team scored a few runs but was still behind by three.
In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.
In the bottom of the ninth inning, Shay’s team scored=2 0 again.
Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn’t even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay’s life, moved in a few steps to lob the ball in softly so Shay could at least make contact.
The first pitch came and Shay swung clumsily and missed.
The pitcher again took a few steps forward to toss the ball softly towards Shay.
As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over.
The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman.< /div>
Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman’s head, out of reach of all team mates.
Everyone from the stands and both teams started yelling, ‘Shay, run to first!
Run to first!’
Never in his life had Shay ever run that far, but he made it to first base.
He scampered down the baseline, wide-eyed and startled.
Everyone yelled, ‘Run to second, run to second!’
Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base.
By the time Shay rounded towards second base, the right fielder had the ball. The smallest guy on their team who now had his first chance to be the hero for his team.
He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher’s intentions so he, too, intentionally threw the =2 0ball high and far over the third-baseman’s head.
Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, ‘Shay, Shay, Shay, all the Way Shay’
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, ‘Run to third!
Shay, run to third!’
As Shay rounded third, the boys from both teams, and the spectators, were 20 on their feet screaming, ‘Shay, run home! Run home!’
Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team
‘That day’, said the father softly with tears now rolling down his face, ‘the boys from both teams helped bring a piece of true love and humanity into this world’.
Shay didn’t make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

We’re in the car driving back to Vermont to catch our flight home. Nathan is in the back squealing with delight as he watches Lilo & Stitch. I’m afraid we’ve created a monster – to get him through the week of confinement and training he had a DVD screen stuck to his face at all times. Now he demands it and if we don’t deliver it instantly, we’re in trouble. Whatever works, right 🙂

Even though it was a very hard week, Owen and I are very happy. We feel that we made the right choice by going to the ABR training and we are excited about what we think this can do for Nathan.

I think after a full five days I finally understand and can explain it a little bit better.

Basically, the whole premise of ABR is to apply kinetic energy to the body to stimulate strengthening of smooth muscles. Loosely defined, smooth muscles are the connective tissue and other structures around muscles. Mr. Bylum calls them the cheapest structures of the body, the ones that require the least energy to run, strengthen and maintain. By strengthening these smooth muscles, we free up regular muscles to perform dynamic movements and other tasks, which require more energy and motor planning and are a lot more “expensive” to run.

Brain injured children have such weak structures and smooth muscles that they tax muscles too much and the muscles cannot perform their tasks properly.

By using “constructions” such as towels and other props and aids, specific exercises are used to apply energy to the smooth muscles. Props are used to bypass the protective structures of the body and get deep into the internal and connective tissues and organs.

To really understand it you have to experience it. If I had read all this and not had the exercises applied on me, I would’ve thought it was all baloney. But as part of the training, the instructor practiced on the parents and the parents had to practice on each other. When it was done on me, I could feel the energy going through my body and I definitely felt it was doing something.

The ABR team talks with a lot of certainty about their program. They say things like, if you put in 200 hours, you WILL see the chest becoming stronger and improving its structure. Of course my question to them was, once his chest is stronger, does that mean he’ll be able to sit up by himself? Unfortunately, their answer is that they don’t know. Their focus is to improve structure. Whatever function is gained as a byproduct of the improved structure is a bonus. Now this was a bit of a tough pill to swallow, as I wanted to hear that spending 3 hours a day on these exercises would show some marked improvements in Nathan’s function. But viewing the situation from a different point of view, we realized that if all this does is improve Nathan’s structure and help to prevent things like surgeries and other painful interventions in the future, we are happy.

Something else that really transformed the experience for me was that I got to meet some families that have been involved in the program for a long time. We didn’t get much time to talk as we were going in and out of training sessions and evaluations. But I did notice that most of the returning children seemed to be doing really well. They seemed to have great structure to their bodies and were doing wonderful things like holding up their heads and sitting up. That, more than anything else, convinced me that we are on the right path.

Now I am convinced that this is an important component to Nathan’s therapy program, but I still do not think this should be the only component. This really just addresses one part of Nathan’s needs and challenges. We still have many more to address.

So our plan once we get settled back home is to put into effect our full-fledged plan with all the different components we have discovered. So a day in Nathan’s life will look something like this:

7am – wakes up. 30 min’s of ABR exercise (jaw)
7:30 – breakfast.
8:30 – traditional physical/occupational therapy
9:30 – 1 hour of hyperbaric oxygen therapy
10:30 – nap with ABR machine when available (back)
12:30 – lunch
1:30 – 1 hour of ABR (chest)
2:30 – PT/ST/DT – traditional therapy
3:30 – 1 hour of ABR (neck/jaw)
4:30 – Reach program session
5:00 – Go out to the park/walk/hang out (bring gait trainer so he can practice walking)
8:00 – wind down and 30 min’s of ABR exercise (solar plexus for reflux)
8:30 – Sleep with ABR machine when available (back)

In the meantime, we will give him G therapy as his homeopathic supplement. ALso, having just finished testing him for food allergies, candida, yeast, heavy metals, etc we will know what supplements we need to give him, foods to avoid, etc. We’re still waiting for the results of all these tests and will set up a diet and supplement protocol as soon as all the results are in.

We think ABR will be a key component in keeping Nathan healthy and in helping him develop some motor skills. But everything else will also support his cognitive and social development.

In general, it was a long week of a lot of hard work. The ABR training demands a lot of energy and concentration. And the trainers expect nothing but 100% from the families, which I think is wonderful. They give the families all of the tools to empower them in the therapy program. We were really impressed with the ABR team and how committed they are to helping kids.

I have to admit that my favorite part of the trip was meeting and hanging out with other families. We got to spend a little bit of time wtih a few very special kids and their families. I fell in love with some of Nathan’s little buddies and hope we can spend time with them in the future.

And now we are arriving at the airport and I ahve to shut down and get on a plane! Thanks for keeping an eye on Nathan and for checking in on us!

And here are some yummy pictures: