"The Way Is Hard, But Clear"

This morning I read the reflection for April 26 in “The Book of Awakening” by Mark Nepo.  He says…”that salmon make their way upstream by bumping repeatedly into blocked pathways until they find where the current is strongest.  Somehow they know that the unimpeded rush of water means that there is no obstacle there, and so they enter this opening fervently, for though it is the hardest going, the way is clear. “

“The way is hard, but clear.”  I immediately saw how this reflects our healing journey with Kevin.  After reading Glenn Doman’s book, in 2006, “What To Do About Your Brain-Injured Child”, it was so unbelievably clear that this was the path for Kevin’s healing journey.  We are so grateful to have had the expert guidance from IAHP and FHC.  But, OH BOY, that road has not been easy.  Which is not to say that there aren’t plenty of happy moments daily.  I recently came across some pictures of Kevin and even some video footage of him in the early stages of doing the program (over five years ago) and OH BOY, what a difference in Kevin.  Just like Glenn Doman said…”we have to look both ways, not just how far we have to go…but also how far we have come.”

Today is our 15^th Wedding Anniversary.  So I was reflecting on this passage further and how it relates to my marriage with Jon.  It was always clear to me that he was the one I wanted to spend my life with…there was never any doubt.  But there have definitely been challenges, just as in all marriages. 

Mark Nepo says in this same reflection that “it is often easier to butt up continually against these blocked pathways than to enter fervently the one passage that is so powerfully clear.  In this regard, salmon innately model a healthy persistence by showing us how to keep nosing for the unimpeded way, and once finding it, how to work even harder to make it through.”  This part of the reflection reminds me of our marriage.  Jon and I were bumping up against some blocked pathways in our marriage in the early days of Kevin’s program.   But through persistence we found the way and continue to put time and effort into our marriage.  This has, and will continue, to make our marriage stronger.

Jon, HAPPY ANNIVERSARY

I LOVE YOU

Reflex Integration with Lasers

Bonnie Brandes traveled to FHC on Wednesday to teach Matthew and his team a new laser reflex therapy.  Quantum Reflex Integration (QRI) uses a low level laser (also known as soft or cold laser) combined with reflex integration techniques.  We had the good fortune of being in the right place at the right time and Kevin and several other kids from our visit were able to receive a treatment.  Bonnie worked with Masgutova’s Neuro-Sensory –Motor Reflex Integration which is part of our treatment program that we currently do with Kevin on a daily basis.  But she has taken it a step further by combining it with lasers to achieve better and faster results.  We are very interested in this new treatment but the laser is an expensive device to purchase, so we want to follow it closely for a few months before making a decision.  But it sounds like a very beneficial way to help Kevin’s development progress.  To read more about this treatment go to www.reflexintegration.net

Kevin's New Program (Spring/Summer 2012)

Nutrition Program
The Nutritionist gave us some encouraging remarks regarding Kevin’s digestion.  She pointed out that Kevin’s constipation does not cause him a lot of pain regularly throughout his day and that he is not a sickly child because of it.  She is encouraged by the fact that we made specific note on his happiness and cooperation.  The only time we see Kevin affected by his constipation is when we need him to crawl on his belly and this could be more so from the distention in his belly which is probably more directly related to the gulping habit that he has.  There have been times when Kevin feels bad, acting crabby and lethargic, and this we determined is probably due to “die-off” symptoms from whatever treatment we are attempting at that time, which ultimately means that it is working.  This last treatment, the GAPS diet, was recommended by the doctor on the team.  I became discouraged while trying to implement this diet because I was unable to complete stage one of the diet and Kevin had a lot of die-off symptoms when starting this diet.  I didn’t progress with diet because I thought he needed to complete all the stage one requirements first.  There were some complications and miscommunication between the team and me regarding this and so we have decided to kind of develop our own way of doing the diet combining the GAPS and Body Ecology Diet and for me to, most importantly, follow my instincts, as every mother knows.

Physiological Program

·          Passive Deep Breathing Program/Reflex Bags – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
·         The Oxygen Enhancement Program/Carbogen Therapy (95% Oxygen and 5% Carbon Dioxide) – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
·         The Mild Hyperbaric Therapy Program – To increase partial pressure which increases oxygen uptake in the brain and body, improving overall brain and body function.
o   Kevin continues to look forward to his time in the “spaceship” every day after lunch for a couple hours.  He passes the time with his books and a good nap.  Once a week Grandma goes in with him and brings new books for him.

Sensory Program
·         Sensation – create the ability to feel the difference between contrasting objects in his left hand and to teach abstract objects with more specific descriptions
·         Olfactory & Gustatory Integration Program – presenting smells to assist development of his emotional and social
·         Auditory Training with Solisten Sound Training (Tomatis Method) – this is a new auditory program that will be done for 15 days.  It is a listening training device to educate the human ear with regard to the listening function.  It uses a sound message that is transmitted by a vibrator (on the top of the headphone) that connects with the skull.  The sound goes directly to the inner ear without passing through the tympanum.  This may help improve Kevin’s emotion, language, memory, and attention.  This is an expensive equipment package to borrow but they are seeing very good results from it.  He will no longer continue with the EASE CD’s to listen to at this time…this was one of our favorite programs…mostly because we got to snuggle on the couch and relax together for 30 minutes while Kevin listened to his headphones.

Intellectual/Emotional & Social Program
One way to help keep me focused (and not become absorbed in Kevin’s digestion and foot) is to skype with one of the team members every two weeks.  We are setting short term goals for me to focus on during these intervals between calls.  Some of our goals will be to stop Kevin’s gulping habit, developing awareness and use of his left hand, and to spontaneously use sign language to communicate.

Physical Program
After completing the serial casting for Kevin’s left foot we saw an improvement in his left foot not turning inward while he was walking.  But about two weeks ago I began to notice that it was nearly always turning inward again.  The good news is that Kevin’s left foot is still more flexible than before we did the casting but because of muscle memory he is turning his foot in again.  The other good news is that while belly crawling Kevin has developed a good toe dig which is a progression in this area as well.  Our new plan is to have an x-ray done of Kevin’s hip (and pelvic area) to officially rule out any structural concerns (this will also give us information regarding his colon area).  We are going to try a new shoe adaption called an in-rigger that will attach on the outside of the shoe on the inside of the left shoe to prevent him from turning his foot in while walking.  We will continue to use the muscle stimulation device on Kevin and of course do lots of crawling and creeping to help as well.
·         Crawling – Our new goal is a little less than the old goal at 300 meters a day
·         Creeping – Our new goal is half of the old goal at 400 meters a day
·         Reflex Integration Program – to support the organization of the Medulla Oblongata and to pattern and integrate pathological and dysfunctional reflexes into higher level brain stages

Myofascial Release Therapy
I will be returning by myself to FHC next month to learn how to do this type of therapy.  This is so Kevin can receive this very beneficial therapy daily to help release strain in certain areas of his body.  Dr. Barry Gillespie (the doctor that does craniosacral sessions as well as the myofascial release during our visits) describes Myofascial Release Therapy in his book “Healing Your Child: Natural Care for Children with Chronic Illnesses” as…“The fascia (not facial or of the face) is a thick layer of tissue somewhat like plastic wrap that fuses with the muscle tissue.  Fascia forms a web that attaches to every structure in the body.  It can become distorted and rigid from trauma and inflammation, causing tension and pain.”  www.gillespieapproach.com

FANTASTIC Volunteers
Kevin continues to look forward to the volunteers and kids that play with him while we do our crawling and creeping laps around the house.  They are always a big motivator for him.  And I am so thankful that they continue to help us out.  They continue to impress me with their creativity and new ideas they have for motivating Kevin.  THANK YOU WE ARE SO BLESSED TO HAVE YOU IN OUR LIVES.

Kevin's FHC Revisit (April 16 & 17)

We have returned from our fifth visit with the Family Hope Center in Philadelphia.  We have now been with FHC for two years. 

I had some difficulty as I was preparing for our visit while filling out Kevin’s revisit report.  The report covers everything that has happened to Kevin and everything that he has done in the last six months.  My challenge was finding the good things that have happened to Kevin since our last visit.  I was stuck in “negativeville”…which can be very disturbing place to visit.  I was feeling disappointed because it felt like another six months of no progress regarding his digestion.  I was discouraged because I felt I was not receiving support for the new GAPS diet I was trying to implement.  After preparing myself as best I could for this diet, I still felt confused and unsure how to proceed with the diet when he began having negative symptoms and not able to complete all the steps.  And I was also feeling disheartened that his left foot began turning in again about two weeks ago.  I was so focused on these ongoing problems of digestion and his left foot and how it ultimately holds him back in so many other areas that I was stuck and needed help getting out.  Thankfully, my brother and sister came to the rescue by giving me several positive points to help get me started and out of “negativeville” because that is not going to help anyone.  After Kevin’s evaluation, the FHC team also had some encouragement regarding Kevin’s digestion and foot problems to give me as well.

Although it’s a bit more difficult to measure, but the greatest change in Kevin (as my brother and sister pointed out) is in his emotional and social development.  Kevin is definitely more cooperative, aware, and happy than ever before.  He is showing a preference, in regards to having favorite shows to watch (Thomas the Train, Little Einsteins, Sesame Street, and his old standard Wheel of Fortune), favorite songs to listen to (“I Wanna Be Like You” from Jungle Book and Adele’s “Rolling in the Deep”), favorite characters (Thomas, Elmo, Cookie Monster, Buzz), favorite people to be with, even favorite food.  Also he has been more accepting of change in routine recently.  He is less interested in flipping light switches and running sink water.  Kevin even has chores and responsibilities around the house that he enjoys doing and doesn’t need to be told to do them.  Jon has felt an even closer bond with Kevin in the last six months.  And we both agree that we have a good balance to our family life...because we all have our work to do but we also have time with each other and for ourselves. 

When we first started with IAHP (The Institutes for the Achievement of Human Potential) during the first four years of Kevin’s program he made such tremendous progress by going through the developmental stages of belly crawling, to creeping on hands and knees, to the miracle of walking, and of course reading.  So after being with FHC for the last two years, it’s hard not to feel some frustration when his numbers aren’t really changing on the Integrative and Developmental Progression Chart that is used for his evaluation.  Overall, we are very happy with FHC, especially when I think back to our first visit two years ago and the fits and hitting and biting that Kevin used to do…I am so thankful…we have come a long way since then.  So there is improvement, it’s just not showing up in the numbers yet.  The FHC Developmental and Progression Chart is much more detailed than the one we used at IAHP and so we have had to go back and tweak some areas in Kevin’s development.  Kevin did make 2 chart changes and 5 quality changes on the chart during this evaluation.  After Kevin’s evaluation, the team met and came up with a few ideas to help refocus some of our efforts and keep us on track.

If you would like to read more about our visit that includes Kevin’s New Program for Spring/Summer 2012 where I also include some of the highlights from our visit like the encouragement from the Nutritionist regarding Kevin’s constipation, an interesting new auditory program, some positive points regarding Kevin’s left foot, and a brand new laser reflex treatment that Kevin received during our visit, check out the blog.  And you can also find recent photos of Kevin there too.  Be sure to look through the Blog Archive listed on the side panel to find past posts or scroll down to the bottom of the blog and click on Older Posts to find all the recent additions to the blog. 

And last but not least I have finally joined Facebook World.  I realize now that it is a great way to connect with all of the wonderful people that have helped us in one way or another over the last six years on Kevin’s program, as volunteers, patterners, and those that keep Kevin in their prayers.  Facebook is one way that you can receive updates on Kevin and read as much or as little as you want and another way for me to keep in touch and up to date with our friends and family.  I am also hoping that through you, Facebook will be another way to connect with families that have kids with special needs.  Many parents with a special needs child feel frustration and begin to lose hope.  If you know someone like this please let them know that there are other options for helping their special special child.  Our goal at FHC is to simply let parents of special needs kids know that this is an option for them.  One of the most frustrating things after finding out about FHC or IAHP is wishing you had known sooner because parents of FHC or IAHP will find answers to help their child improve their quality of life.  As always, you are free to share my contact information with anyone that may be interested. 

www.familyhopecenter.org

Happy Easter 2012

So Handsome!

Lots and lots of treasures from KofC

Thank You Mr. & Mrs. Berry

 

Trains AND Bubbles

Happy Easter to all

Love & Happiness