Kevin is 10 years old and we had our TENTH visit with The Family Hope Center in Norristown, Pennsylvania. FHC recognized this milestone visit by presenting Kevin with a personal gift. He received a backpack and a Superman T-shirt. Matthew reminded us that in “Man of Steel” (the 2013 Superman movie) we are told that the “S” on Superman’s chest is the Kryptonian symbol for “hope”. Henry Cavill, who plays Superman in the movie says that “It’s that hope against the odds, to beat all odds, no matter how steep or how grand and it’s just standing up and facing the troubles and going I will not surrender.” Here are some odds that Kevin beat in the last six months! Kevin made 5 chart changes and 5 quality changes giving him 3 months of neurological growth. His gains on the Integrative and Developmental Progression Chart were in Reading, Understanding, Tactility, and Emotional/Social categories.
It gives me hope and motivation that Kevin has finally made some progress on the neurological chart. For the five years that we have been with FHC he has not had much development on the chart as he did in when we first began the program. Although he is not the same boy that was hitting and biting five years ago, his progress has been in other areas and not measurable on the chart. But ultimately our goal is to further Kevin’s development by the progress he makes on the chart. At times it can be very frustrating to work so hard for so long and not have much to show for it. I was very downhearted while working on the revisit report as I looked back over the last five years and not seeing the change I would have liked to have gained with all our hard work. It is not typical that FHC would not be able to see more chart progress in kids that follow the program…which is frustrating for me, the dedicated Mom doing the program.
Matthew, “The Boss” of FHC did Kevin’s evaluation during this visit. During the testing, Kevin started doing the same thing he always does, looks at the correct answer but points to the wrong one. And basically Matthew wouldn’t have it, he would give Kevin a reset and firmly tell him to focus. I began to question if this was legitimate because I didn’t want Kevin to obtain progress on the chart only to have it taken away later like the victory he received at IAHP for reading. But the truth is we KNOW Kevin KNOWS and the goal now is to expect it from him even if he needs a reset to get there. As an added bonus, Kevin’s progress was further confirmed after spending the Thanksgiving holiday weekend with family. I do see a shift and change in Kevin from just six months ago.
We spent a lot of time with Matthew at FHC to help us come up with some answers and a plan to help Kevin’s progress in all areas. Matthew did Kevin’s evaluation, his physical program, and both days he did an unwinding (bodywork) which included four people and an allergy clearing.
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After Kevin's bodywork session, he sat in this position on his own, which is usually not comfortable for him
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Best Thing
Other areas of change (not measurable on the chart) was that Kevin’s digestion improved and he is making vocal sounds, after his session with the Solisten headphones in June. This is the most sounds we have heard from Kevin and the longest period of time that he has kept the sounds. It is very encouraging when other people actually get to hear the sounds he is making. Another new thing is that Kevin sometimes has an opinion about which shirt he wears and what he watches on TV. He has even chosen a couple new shows to watch, that I had not introduced to him.
Worst Thing
The big areas of frustration are: digestion (although there has been improvement we still need more); walking (desperately need to get that left foot straightened out); and communication (he is not consistent and he easily loses abilities that he has shown in the past).
Mollii Suit
We were very disappointed that we did not see the results we were hoping for after having the Hyprocure surgery and purchasing the Mollii Suit. Unfortunately, we have had many delays with the Mollii Suit from Sweden. We received the suit in May. After trying two different jackets they had to add extra material to a jacket for him because it was too tight around his distended/bloated belly and I had to have an extra person around to help me zip up the jacket and then the zipper would open up at the bottom. In July and August as Kevin began walking more after his surgery, his walking became worse. We then came to the conclusion that the Mollii control unit was not working. We sent the control unit back to Sweden in August. Once the control unit was finally returned to us two months later, we realized it was shutting off after 15 minutes. Sweden very quickly sent us a new control unit. During our revisit at FHC, Matthew was able to verify that the new control unit was working properly, he even wore his suit with Kevin’s control unit and said he was very pleased with how it is programmed for Kevin. But we were disappointed to find out that the Molli suit does not fit him properly. Kevin’s body shape is not typical. His belly is often distended and bloated but his arms and legs are like sticks. The pads inside the suit that carry the stimulation need to press tightly against his skin, which it was not doing on his arms and legs. While we were at FHC with Matthew, we were able to Skype with Sweden to solve these issues. They are now custom making jacket and pants for Kevin to ensure that it fits properly. The people from Sweden have been very cooperative with us and want the suit to work as much as we do.
Dr. Joe (the foot doctor)
We also met with Dr. Joe while with Matthew. The Hyprocure surgery did what it was supposed to do, it strengthened his ankles, because he has not sprained his ankle like he used to. Kevin’s right foot looks great. But Dr. Joe explained that Kevin’s left toe walking looks worse now than before the surgery because he can’t collapse his arch, the bones can’t dislocate, and so he compensates by walking on his toes. After several consultations with chiropractors, a physical therapist, and a doctor of osteopathic medicine, we all concluded and agree that Kevin’s left tibia is about a half inch shorter than his right leg. This is causing some additional stress on his left hip and left foot. Dr. Joe is making him a new pair of orthotics that will help make up the height difference and help him keep his left foot from turning in while walking. There is also a contracted big toe on his left foot we are keeping a close eye on that may need a small procedure.
Physical Program
We will continue Reflex Integration with some additional reflexes to work on. We will belly crawl 100 meters a day and creep on hands and knees 1,000 meters a day. While creeping we will use the left arm brace and we are going help Kevin creep in a better position with a bolster between his knees and a strap around his ankles (Lord, help me!). We hope that this will prevent him from knocking his knees together and sprawling his feet out. We will also continue walking the wooden track to help him keep his left foot straight. When we get our new and improved Mollii Suit he will wear it for the hour that he is walking the track (4 days a week).
Nutrition Program
Another big hopeful part of our revisit was meeting with the new medical doctor and nutritionist. Kevin has had a long time challenge with his bowels. He has been less constipated with the lycopodium remedy but as I said still much more improvement is needed in this area. Both Dr. Kristin and Dr. Coralee (who we met with at our very first visit to IAHP in 2006) have recommended that we research and consider the Chlorine Dioxide (CD) Protocol by Kerri Rivera. In her book “Healing the symptoms known as Autism” she states that “autism is avoidable, treatable, and curable.” Kevin does not have an official autism diagnosis but he does have Autism Spectrum Disorder symptoms and biomedical issues…”viruses, bacteria, candida, parasites, and heavy metals cause the behaviors that lead to an autism diagnosis. Once you remove what is causing the symptoms, you can remove the diagnosis.” They are having great results removing these symptoms with the CD protocol. I still have to do my research but I am very hopeful about it and anticipate beginning it in a couple months. I will post updates along the way regarding the protocol.
Physiological Program
We will continue Mild Hyperbaric Therapy and Deep Breathing Reflex Bags. We are adding a new (but old and improved) program, the Coordinated Breathing Machine. This will help teach Kevin to breathe with good rhythm and deliver more oxygen to the brain. This is the vest and machine that we had over 5 years ago while at IAHP with some important adjustments from FHC. This will be a passive program he does in the evening before bed.
Sensory Program
We will continue Olfactory and Sensation Programs. And because Kevin has had so much success with the Solisten Headphones (a 2 hour program for 13 days) for vocal sounds we will likely have a fifth session in 2-3 months.
Learning/Developing Self
Quality Control - Our goal is for Kevin to be more consistent and clear with output in areas when we know he knows. Kevin can make clear choices by looking AND pointing, using a reset or time out when needed. I have been so pleased that, when needed (not very often), time outs are finally working with Kevin. And the best thing is it not a big deal and he comes back cooperative. In our daily life we will continue to incorporate: Sign Language; Time Concepts; Color; and Spatial Concepts. At Table Time we will continue to work on: Sequencing; StoryTelling; and Numicon for math.
The 2014 year has definitely been a challenging year for us as a family. We began the year with Karen’s Dad’s recent heart transplant. In February, Karen had surgery. In April, Kevin had Hyprocure surgery. In June, Jon’s Dad was in the hospital for several weeks and passed away. And in September, Karen’s paternal Grandma (Bubbie) died at the age of 90. We know there will be more challenges in our future but I have high hopes for the year 2015. I’ll share a secret with you. After this revisit, I had a dream. I dreamt that Kevin said his first sentence. He said “I want ____”. I don’t remember what it was that he wanted but I do remember that he said it twice in the dream. This is the first time I can remember dreaming (while sleeping) of Kevin talking. Please continue to keep Kevin in your prayers for healing. And we will continue dreaming and working hard.
Wishing you all a healthy and happy new year!
