I have a bad habit of listening to people and taking what they say to be truth. Long ago I found out about a book called "What to do about Your Brain-Injured Child" by Glenn Doman. I do not even remember how it came across my path. I asked a few people about it and was told how bad it was. I asked a doctor at St. Christopher’s about it and was told not only is it horrible but that she knew a mother who killed her child and then herself over it. Naturally, I didn’t even bother to read the book even though I had bought it from half.com. As you saw from the post about Mondays appointments, doctors have given up on Dillon. They don’t give me anything hope in helping him to get better. Out of desperation and curiosity I took the book off my shelf and began reading. I was amazed at what I read; I walked around the house reading as I went. Even when I woke up in the middle of the night to feed Jay I would force my eyes to focus so that I could continue reading. I am going to try to sum up some of the things I read, however, for anyone with a brain-injured family member – READ THE BOOK! Or even for those of you who want to understand Dillon better, please read the book.
Glenn Doman started as a physical therapist who desired to learn as much as he could. He came across a child who was no more than two feet long, but had the head of a normal adult, and spoke fluently. He was eleven years old. Mr. Doman found the child’s doctor Fay Temple, and they ended up working together for many years. You really need to read to understand it all, but basically a group of doctors, nurses, therapists, etc. joined together to try to help the brain-injured child. Theywere willing to let the team as a whole “attack” their methods. Their goal was to figure out why they were ineffective. Their answers were always, “because this is how we have always done it”, or “because this is how we were taught to do it.” To make a long story short, this group of people has had an institute in Philadelphia for 51 years now. Their therapy ideas have done amazing things with children. One place in the book it says that they work with kids in comas ranging from 60 days to several years. About 50% of the time they can bring children of out comas! They have helped children to walk, talk, see and hear. The idea is to do the therapy with the child every waking hour. You need to find the break in their brain and work to fix it. Therapy shouldn’t be working with arms and legs that work perfectly fine, it should be working to fix the injured brain. They said for children who have light reaction only, which is what Dillon has, to shine a flash light in their eyes from 18 inches away for two second. Do this ten times with 3 seconds in between each time. This allows their eye to dilate 120 times whereas in a normal day it would be so many less. This works their brain in the area they do have to make it stronger with the hope of the child being able to see outline after a while. Then the therapy would change until they could see more, etc. Another idea they had is for the child who on the tummy can move their arms and legs but aren’t getting anywhere. They said to buld an 8 foot long ramp with 8 inch sides and 30 inches wide. It is to be elevated high enough that the smallest movement of the part of the child will push them down. This encourages the child and takes away the “I failed again!” attitude. It was so good for me to be reminded that even though Dillon can express it he knows when I am saying “you failed again” instead of “good boy, you did it!”
There was so much information in the book I can’t even begin to put it all in here, but I did call the institute. They offer classes for both parents that are 5 days long, all day, with only very short breaks. This class is just over $1,600. There are then more intense levels of therapy you could continue with if you decide. The appointment to have your child examined is about $3,000 and then the most intense level requires a visit every 6 months that is about $4,500 (however these visits are a full week long at the institute.)
So where are we at with this? I have decided to do as much as I can and to do it for no less than 3 months in order to give it a fair chance. These people are the only ones who think it is possible to help a brain-injured child get WELL, not just better but well! I am so tired of taking my son to people who take away hope; I am willing to try what these people say. If God still doesn’t want Dillon to get well, he won’t, but at least I will never look back and say “did God just want to see if I would be selfless enough to commit myself to helping Dillon? Did I just give up on God? Did I not have faith that God could heal?” I won’t have those doubts; I will look back knowing that I did everything I could to help Dillon be the most he can be. And no, doing what I can is not taking God out of the equation. When you get strep throat – do you take medicine or do you sit back and say “God can heal it.” When you have a head ache, do you take pain killers or do you say “I am not going to take anything because God must want me to have it since He allowed me to get it.”? I know that if this therapy, or any therapy works for Dillon, it will be ONLY because God allowed it to work for him. Dillon is in God’s hands, but as his mother I believe God wants me to do everything I can to try to help Dillon. I hope this makes sense because I really have given this much thought. I do not think it is a lack of faith to try different things, just a it is not lack of faith to take medicine for other things. Okay, so my schedule is this:
Starting at 10 am and going every hour until 10 pm (Sundays are off, hours of therapy are off as well). We start with the vibrator for about 1.5 minutes, then we do two times of lemon or lime juice on his tongue, then we do the flashlight in his eyes, then we do the ice cold thermometer on the back of his mouth. Plus three times a day Josiah and I are “patterning” Dillon. This is where we put him on his tummy and move his arms, legs, and head in the pattern of how he would “grunt crawl”. We started this on Thursday and already we are seeing him lift his head and try to move his arms and legs to try to move. Tonight, Josiah and I built him the ramp in hopes of encouraging him by letting him feel himself actually moving. We are so happy with how he has been doing the last couple of days, I am more determined than ever to give this a try.
I have to – for Dillon.