Thursday, November 29, 2012


Nutrition Program
Kevin biggest problems in life right now continue to be physiological including his digestion and gulping.  There have been small and temporary improvements in this area but still much more improvement is needed.  We find it encouraging that Kevin’s allergen reactions have been less severe.  I am not talking about ingesting an allergen but he did touch a dog treat with peanut butter and did not break out and this past spring we actually had the windows open in our house and he did not have any allergy symptoms.

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.
o   This program is on hold for one month to determine if it is contributing in any way to Kevin’s gulping behavior.
·         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.
o   This program is on hold for one month to determine if it is contributing in any way to Kevin’s gulping behavior.
·         The Mild Hyperbaric Therapy Program – To increase partial pressure which increases oxygen uptake in the brain and body, improving overall brain and body function.
·          The Coordinated Breathing Program – To create good rhythmic breathing that as a result delivers more oxygen to the brain. 
o   Jon or I will be recording our breathe set to a metronome to help condition Kevin to breathe in a good rhythm.  He will listen to this breathe recording at night while he sleeps.
o   We hope this will help reduce some of his intestinal pressure which is also connected to distorting his left hip thereby affecting his left foot. 

Sensory Program
·         Self-Massage for Proprioception – To create the ability to feel the difference between pleasurable and unpleasurable sensations in the appropriate length of time consistently all over the body. 
·         Olfactory & Gustatory Integration Program – To present smells to assist his emotional and social development.
·         Oral Motor – To create the ability to have full sensation and awareness inside the mouth.  To improve chewing, swallowing, and language.
·         Auditory Training with Solisten Sound Training (Tomatis Method) – This is an 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 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 emotion, language, memory, and attention.  This is an expensive equipment package to borrow but they are seeing very good results from it. 

Language and Learning
The team was especially excited to see some key improvements in Kevin, specifically something called joint attention, which is significant for social communication, demonstrated by the shared focus of two individuals on an object, using eye-gazing, pointing or other verbal or non-verbal indications. We also feel that his understanding and social development is improving, and we are seeing him begin to imitate behavior. 
Kevin is using a couple signs “apple” and “dad” spontaneously and regularly in context and out of context.  We will continue to teach and use sign language through various teaching methods and observation.  They find that by using sign language to communicate with others kids develop interaction skills that include eye contact and being engaged with others.  Also, the fact that learning sign language stimulates the brain in the same way as speaking language which will help his brain to develop verbal communication. We will encourage vocal play to imitate speech sounds.  And we will be concentrating on Developing Standards and Responsibilities for play to help control repetitive actions (like gulping) and obsessions, with a more varied and functional play.

Physical Program – Basic Brain Organization
There have been big improvements in Kevin’s left foot since our last revisit in April.  I describe it as: I don’t cringe and remember with each step that his foot was turning in when he walks.  I think the ½ inch wedge insert in the left shoe and the new orthotics have helped reduce turning inward of the left foot while walking.  But we still need to improve the function of his left foot including its relationship to his hip.  So we will try the hip abductor wedge again for him to wear at night while sleeping.  We have to make some adjustments to the wedge to keep his skinny legs from turning in the straps and preventing his hips from getting in a worse position.  He will also continue to receive the Electric Muscle Stimulation (EMS) and possibly add in a Transcutaneous Electrical Nerve Stimulation (TENS).
·         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.
·         Crawling – Continue our goal of 300 meters a day
·         Creeping – Continue our goal of 400 meters a day
o   Add an “AFO” arm/hand support brace (if I can find someone to understand and make this).
·         Walking – We will be building a walking track for Kevin to walk in to keep his foot from turning in.  Beginning with 50 meters and increasing to a total goal of 2,000 meters daily.  The tricky part is being able to make the track long enough to cover a sufficient amount of distance without needing to turn around too many times but it will also need to be easily movable as our floor space is already used for crawling and creeping.  Here we go again with the crazy devices in the house! Watch your step when you come to visit J

Our AMAZING Volunteers

Kevin’s FHC Revisit (November 26 & 27)

We left the Sunday after Thanksgiving for Kevin’s sixth visit with the Family Hope Center in Philadelphia.  Kevin made 3 chart changes in sensory development and 11 qualitative changes on the Integrative and Developmental Progression Chart, with 4 qualitative changes in his emotional and social development. Here are some examples of the changes we have seen in his development this period.

I was feeling restless in the fall and my instinct told me that Kevin was ready to have more opportunity to be with other typical kids as small breaks from his program a couple times a week.  A sign language class was being offered for kids and their parents once a week.  This is not really a situation for Kevin to learn new signs, but it is a good opportunity for him to be with other people and kids and observe them using signs in a fun way using songs and books.  I also began taking him to story time at the local library.  He loves it! I have no problem with his behavior when I take him to these new places and getting him to join the class.  He practically runs into the library and he knows to wait for the bell to ring and then go into the room and sit down on the floor.  He listens to the stories and he loves watching the kids sing songs between the stories.  He stands up with them during the songs and I try to help him with some of the movements to the songs if he is able. I think it is really good for him to watch and observe the other well kids doing things that one day I hope Kevin will do too.  We have also tried a couple other local library story times, and I was surprised how adaptable Kevin has been to all of this. One of the other benefits is that Kevin has more opportunity to not only be around other kids but also babies, and Kevin loves babies!  He can’t wait for his new cousin, Baby Hudak to be born in the new year, and we are working diligently on learning the sign for baby.

This part about Kevin observing and wanting to be like the other kids is probably my most favorite improvement in Kevin this period.  In fact while attending church, it was Kevin’s idea recently to join us kneeling instead of sitting in the pew.  This made me very proud. 

There has also been a big improvement in being around animals.  He is not fearful of being near them.  He will give dogs (even strange dogs) treats out of his hand.  And for the first time last week he touched a dog.  He had even been fearful of cats, and recently we were buying bison meat at a local farm and there were two cats in the barn and Kevin was actually laughing and chasing the cats around. 

I cannot stress enough, how enjoyable it has been to take Kevin out.  It has improved so much since our very first visit to FHC (at that time there was lots of hitting and biting).  Now we are not limited to the places that we can go with Kevin.  And it used to be when we took him to a store, I had to get what I needed quick and he could not see the exit door before it was time to leave or else he would insist on leaving.  He is also very polite with people that are friendly towards him, often times initiating a handshake. 

Don’t forget to check out the blog, if you would like to read more about our visit that includes Kevin’s New Program for Fall/Winter 2012/13 where I describe some of our new programs including some innovative and creative ideas for his physical program and some developmental highlights from his language and learning program.  My two favorite blog stories from the last six months was the apple story in “Dear Mustard Seed Market” and the “Amazing Birthday Swimming Surprise” and of course lots of photos of our happy boy.  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.

Hope & Intention

In Kevin’s November Revisit Report, I shared some discouraging feelings I have been having regarding his progression.  Here is what I wrote and what we discussed with FHC to put my mind at ease to encourage me along and get my motivation back.

Kevin was one and a half years old when we discovered Glenn Doman’s “What To Do” book.  This book answered our questions and gave us so much hope.  We immediately began patterning and went to IAHP a couple months later and spent three years with them.  During those first few years, I was intensely focused on getting Kevin well.  We set our goals and worked hard and Kevin learned to crawl, creep, and walk.  We set a goal and we achieved it. For some reason I had in my head when we began this journey that Kevin would be walking by the time he was 5 years old. And he did, but in my na├»ve mind, walking equaled well or at least close to his peers.  I am so grateful for the walking that he does and can do (for a boy who was never supposed to walk), but I thought that getting him to walk was going to be the hard part.  We were with IAHP a year or so after Kevin began walking and then switched to FHC, where we continue to work hard but also enjoy life and family time.  But every year that Kevin gets older my hope that he will catch up to his peers loses faith because he is getting further and further away from his peers.  I want to stay strong and positive for Kevin so that I can continue helping him progress. I was so grateful for the swimming experience that Kevin had on his birthday because it does stir a bit more hope in me, and give me verification that the work we do is doing something.  But I am still feeling like maybe I need a shift in my thinking.  Do I continue believing and hoping and intending for Kevin to catch up to his peers?  When I allow myself to think of the possibility that he may not catch up, it makes me feel like I need to accept his disability all over again in a new way, which is probably reality to most.  I try to not allow the doubtful feelings to consume me, by focusing on all the happy moments we have every day, here and now, but the doubt does sneak up on me sometimes and I feel like it may be something I need to deal with.

Please do not misunderstand, I am not giving up on Kevin, but doing the program for the last 6 years we have kept ourselves in a protected bubble here totally relying on our friends in Philadelphia to guide us along this journey.  I feel grateful and blessed for the progress that Kevin has made since we began the program.  We are so grateful and happy with FHC and I am still not ready to give up hope and the Hope Center but if this is going to be the world we live in I feel like I should stop avoiding and denying where Kevin truly is and not where I hope him to be one day soon.  I feel like I should be aware of what is available to Kevin in our area. I thought Kevin would be catching up to his peers by now and I have avoided the developmentally delayed county services because I thought we would not need them.  Now I am feeling like I should get him in the system because I am not aware of the services available to us and what happens later in life.  I feel in a way that I am giving up on him by doing this but also I feel like it could be foolish not to be aware of the services offered and to be prepared for later in life.  Also, due to the set back in walking that we have had, I am beginning to wonder if we need to consider buying some kind of wheelchair stroller.  We have been getting by with a toddler umbrella stroller or wagon for when we go someplace that has a lot of walking. But the stroller is getting too small for him and the wagon is not always convenient to take to some places.  This is something I have been avoiding because it helps me deny where Kevin truly is and not where I hope him to be one day soon.

Based on Kevin’s evaluation chart, it feels like he is continually falling backwards because he has not had neurological growth as fast as or faster than his chronological growth, since achieving his walking goal at IAHP.  So if he has grown chronologically 6 months, he may only have grown 2 months neurologically since his last 6 month evaluation.  This minimal progression on the evaluation chart is causing confusion and frustration for me and not only that but also the big steps back we have had to take in regards to walking and reading.  Kevin read all those books and 10,000 bits with IAHP and I feel like I have no idea where his intellectual ability is. I understand that this is so we can lay a better foundation, but it is frustrating to not see much progression on the chart and then have these 2 big things taken away.  I know Kevin has made progress since he began to walk and since we switched to FHC and they are important skills that have made life better for all of us.  But since the crawling, creeping, walking goals I feel like our new goals are not as specific and make me feel unfocused and I am losing confidence in myself. I feel like I need an intention to set my goal on for Kevin.  If my intention were clear and specific would we progress more or is this next stage after crawling, creeping, walking just different?  I understand the evaluation chart and understand that the next task would be our intention but it just seems different from when we focused on the crawling, creeping, and walking.  Why do these goals seem so different? I know we have to take it one step at a time, but what is our next landing? What should we expect to get out of this? 

So after meeting with our favorite brain experts at FHC, here is how they eased my mind and helped encourage and motivate me. This is a marathon journey we are on, it is not a quick fix.  He is making slow but steady progress.  Based on the Integrative and Developmental Progression Chart, Kevin’s neurological age is still about a 2 year old.  He has not achieved all brain function in the 6 levels of brain function that includes birth to 3 years of age and the next level encompasses a 3 year age span for 3-6 year olds, so of course it is going to take even longer for Kevin to make that 3 year jump into the next brain level.  We also discussed focusing on reading; they feel our time is better spent on other developmental tasks to help organize his brain.  They feel like it is unconstructive to have the ability to read at a high level but not be able to function in society and not be able to use the information that you are reading about.  We also talked about the facilitated communication.  They discourage using it, unless the parent is confident there is no influence, which I was not.  They find that by using sign language to communicate with others they have to develop those interaction skills that include eye contact and being engaged with others.  Also, the fact that learning sign language stimulates the brain in the same way as speaking language which will help his brain to develop verbal communication. Those crawling, creeping, walking goals that we accomplished are different because they are quantitative and can be easily measured unlike communication, understanding, sensation, emotional, and social.  And we continue to crawl and creep because it continues to organize the brain.  Before our revisit I had already begun the process to get Kevin into the county developmentally delayed system, which FHC agreed was the right thing to do.  I feel encouraged and understand the process a little more clearly.  One of the things that made me feel really hopeful was that they envision being able to introduce Kevin into a classroom type setting for a short period of time, possibly in 2 years. I got my MOJO back!


Clever Boy with Pap's Cane

A Happy Thanksgiving

It is hard to believe that my favorite holiday was just one week ago.  Some of my family came to spend the holiday weekend with us, my Mom & Dad, and my sister & her family.  One of the reasons this is my favorite holiday is that there are no expectations in my head or memories associated with this holiday that Kevin cannot participate in or get excited about, because Thanksgiving is just that, being thankful for what we have and spending time with those we love…oh yeah, and the part that Kevin does especially well…eating turkey! 


"Lets take a bath, a bubbly bubbly bath!"



Wacky Wednesdays with Grandma

pa rum pum pum pum!!!