We had a wonderful weekend around here gearing up for the addition of a new therapy for Jacob.  This therapy is called the Gravity Assisted Environment and was developed through a partnership between The Institutes for the Achievement of Human Potential and NASA.

The device is a track from which Jacob is suspended in the crawling position that allows his movements to easily result in forward motion without the burden of holding his own body weight!  Sounds pretty simple…until you try to build it!

Enter Bryan!!

When we were in Philadelphia, we had a great opportunity to try out this device.  Jacob loved it and we were thrilled with its possibilities to link his enthusiastic efforts with successful motion.  We had a chance to take pictures of their examples and see some pictures of devices other parents had built.  However, it was up to Bryan to make it a reality in our home.

He researched, planned and built a truly incredible tool for Jacob.  I am so incredibly proud of his talent and dedication!  We sure are lucky!!

We have seen incredible improvement in Jacob’s mobility in the last 2 months and I am so eager to share how this new tool helps him progress further.  Stay tuned!!

I was thrilled to stumble across another mom’s blog article about the work of IAHP this weekend.  I know there are so many other families out there, but since the goal of IAHP is to help as many children around the world, not just in the US, it is a treat to find a family who has done the work and reaped the rewards right around the corner.

We see amazing progress in Jacob every day, but we still have a long way to go.  However, we know we will get there.  Jacob does things on his schedule…he always has.  In the meantime, we will enjoy the smiles, laughter and ever increasing chatter!!  He is so amazing!!

We are not the only ones that know about IAHP.  Adrian knows about them and you do too.  Do you know someone who needs to know about them?  Please enjoy my first guest post from Adrian!

I know some people who can do some pretty amazing things. Seriously, amazing things. Like making blind children see. Making children walk who had never walked before. You know, boring, everyday stuff like that.

Take this man. Looks a little like Santa Claus, doesn’t he? But he gives kids a gift that is much better than mere toys. His name is Glenn Doman and he has devoted his entire adult life to the treatment of brain injured children. Not just his own life, but his wife and at least two of his children have followed him into this field – (maybe all three, I can’t remember). That’s a rare level of dedication. He’s in his 90’s now and I haven’t seen him in a decade or so, but if I know him, he’s still going – as much as he can do. You can’t retire when you’ve got so many injured kids and their parents who need you.

I’m sure you’re wondering why you’ve never heard of this program. I am too. Isn’t it funny that we live in a world where everyone knows everything there is to know about Lindsay Lohan, Charlie Sheen, and Brittney Spears, but you don’t hear about a tiny little place in Philadelphia called the Institute of the Achievement of Human Potential (IAHP.org) that is doing these wonderful things. Although they aren’t just in Philadelphia any more. They are in Japan and Spain, and about 5 other countries.

Here are some actual numbers from their most recent report – out of 278 blind kids that were seen in a 2 year period, 236 of them are now able to see and 194 of them can see well enough to read. That’s an 85% success rate. Sounds too good to be true, but it’s not a hoax, or a gimmick, or a scam. What is it? It’s a lot of hard work, mostly by the parents of the kids.

To get a child to see, the parents do something very simple – they take the child into a dark room and they take a $2 flashlight and they turn it on and off. And on and off. For about five minutes out of every hour. For 10-12 hours a day. 7 days a week. 365 days of the year. Plus a bunch of other exercises – all day, every day. Yes, it is a drastic amount of work. But if your child is facing a lifetime of blindness, how much is too much?

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Seems completely bizarre doesn’t it? No one ever thought to shine a flashlight at a blind child. Why bother if they can’t see? But that’s just the point. There’s a natural law about the body – form follows function.

If you run long enough and hard enough, you’ll have the body of a runner. Seen Biggest Loser lately? If you do ballet for enough hours of the days for enough years, you’ll develop the body of a ballerina. If your brain senses a light shining in your eyes hundreds of thousands of times, it will slowly, gradually build a new pathway to the optic nerves. Weird, huh? But it’s worked for all these hundreds of kids. And not just blind kids – autistic kids, ADHD kids, children with Downs system, and disabled adults as well. They have done some groundbreaking work with stroke and epilepsy victims. It is a rare child they are not able to help in some way.

Check them out – I guarantee they are MUCH more interesting than Lindsay Lohan!   Their books are in every bookstore, just search for Glenn or Janet Doman, and their website is IAHP.org. If you are the parent of any child – healthy or not healthy, I guarantee you will learn some things that will amaze you and might change the course of your life.

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Wow!!  What a month it has been!  I didn’t mean to fall so behind on the blog but we just got so busy with our revisit to IAHP. Before I begin, I must extend a HUGE thank you for all the support we have received through donations and our fundraiser.  These revisits are absolutely critical to Jacob’s development and we couldn’t do it without you!!

So, without further ado…

Jacob’s Evaluation and New Program

The first day of our revisit is when Jacob’s progress is evaluated.  The specialists at IAHP essentially walk through Jacob’s existing program to see how he does.  They also measure him to see how his has grown.  Then his progress is compared both to that of a well child during the same period and to Jacob before the program.  So how did he do?

Intellectual growth – Jacob earned both his Seeing and Reading victories.  The Seeing victory means that he now has appreciation of detail within a configuration.  We saw the Ophthalmologist who examined Jacob at the last visit and he was very pleased with Jacob’s visual progress.  We even saw Jacob track an object!  It is one thing to have the ability to focus on an object, it is quite another to follow it as it moves through space!  His Reading victory is equally exciting!  This victory means that he has demonstrated the ability to read at least 100 words.  Whaaaat!?!  This formerly blind 2 year old can READ??  YES!!!  It is no surprise to us as it is something we work on every day.  But, how do we know?  Well, we brought samples of Jacob’s reading cards which have single, LARGE print words.  We held up 2 words and asked Jacob “which one says Corvette?”  or “which one says banana?”  Jacob would then look at the words and focus on the correct word.  He did it correctly all 5 times!!  So, we have shown Jacob over 200 words and he got them 100% right, therefore we can surely conclude that he can read at least 100!  Yipee!!

Physical Growth – Jacob is getting SO close with his crawling.  I realize that I have not yet completely explained Jacob’s physical program but I promise to outline it one of these days.  The bottom line is we are all very proud of Jacob.  He is clearly demonstrating that he has the ability to move his body in the necessary way to move, he just needs to put all of the pieces together.

His new project will do just that.  We will continue to give him plenty of opportunity to move and we will continue the patterning to show him the proper way to move.  We will add a “gravity free environment” and a “gravity assisted environment.”  The Gravity Free is like a bouncer on steroids.  It’s purpose is to develop the vestibular areas of the brain which are responsible for balance and integration.  The Gravity Assisted will suspend him in the crawling position and will support some of his weight while allowing him to still touch the ground .  When he moves his arms and legs, he will make progress easily.  He got to try it out in the mobility room and he LOVED it.  He just took off!

When a child has physical obstacles, gravity becomes their worst enemy.  In 1976, IAHP began working with NASA to develop programs for our children.  In fact, Dr. Ralph Pelligra,   Chief Medical Officer of the NASA Ames Research Center, is still on the board at IAHP.

Lecture – Tuesday and Wednesday were jam packed for Bryan and I attending lectures.  IAHP takes their education VERY seriously.  Every single detail is meticulously planned.  The auditorium was built to be the ideal learning environment.  It is even kept at a brisk 63 degrees because, as discovered by IAHP founder Dr. Temple Fey, the lower the ambient temperature, the less oxygen the brain requires and the easier it is to obtain and retain new information.  The speaker presents for exactly 50 minutes and, when the bell rings, they will stop, mid-sentence, and we take a 10 minute break.  At the end of 10 minutes the bell rings again and they pick up right where they left off.  At this visit we reviewed  intellectual growth, physical growth, social growth and physiological growth.

In addition to learning about the Gravity Free and Gravity Assisted environments, we also reviewed the effect of food, chemicals and the environment on health, behaviour and the brain.  Further, we learned how Applied Kinesiology can be used to help our kids.  The Chiropractor and Applied Kinesiologust on staff at IAHP evaluated Jacob and made recommendations that we will follow to further his progress.

IAHP takes social growth and development very seriously and we were thrilled to have our first lecture on this topic at this visit.  The IAHP plan is called “The Law” and, like most of their programs, it takes behavioral issues right down to the basics.  It is a simple plan of making very clear rules with appropriate consequenses.  This will surely come in very handy as Jacob gets older, but for now maybe we can use it to keep Bryan in line (haha!)

The final day of Lecture was focused on Intellectual Growth, joyousness of reading, the auditory pathway, communication and language development.  We learned about the impressive tool of Facilitated Communication, invented by Rosemary Crossely in Australia. We are currently using a choice board with Jacob and will be advancing from a simple yes/no board to more sophisticated communication with more options and better questions.  Later, we will use a letter board to aid in our communication and if necessary, we can also progress to using acomputer.  This will certainly not replace speaking and developing language, but it will help Jacob communicate with us while we work to understand what he is saying.  The examples of written work produced by the children of IAHP using facilitated communication is just astounding!!  As they always say, brain injury does not limit a child’s intelligence, only the child’s ability to express that intelligence.  We know Jacob is a VERY  smart little boy and he proves it more and more each day.

Other Fun

Although we have very little free time during our trips to IAHP, we did have a wonderful opportunity to get together with Bryan’s sisters.

We went to center city Philadelphia and toured all the sites.  It was a lovely day, although Jacob slept through most of it.

We are so grateful that they were able to make the trip in to see us!  During the week, our days often run very late.  However, we were able to get together with our wonderful IAHP friends, Ryan and Catie Lewis.  Their daughter, Cate, is about Jacob’s age and is doing incredibly well on the program.  You can check out Cate’s story at www.injuredtoincredible.com

Phew!  That was a lot.  Again, I apologize for the delay.  I look forward to sharing so much more.  Thanks for following and remember, if you would like to receive and email when I post, click the Follow by email button at the top right side of the page!

I have written before that Jacob works very hard and that his day is very full.  But what does that really mean?

Jacob’s program, developed by the specialists at The Institutes for the Achievement of Human Potential, was specially designed for his specific needs and to fill the gaps in his development.  It was also designed to be achievable by a child of his age.  I will say, however, that it takes significant strategy, planning and a little luck to get it all done each day.

To help with prioritization, Jacob’s program can be divided into 3 parts…Physiological, Intellectual and Physical.  In effort to explain each of these important programs, I will separate them into 3 posts.

The highest priority is Jacob’s Physiological program.  This portion has to do with Jacob’s overall health, nutrition and respiration.  I have written previously about Jacob’s nutrition and the importance of giving him all the building blocks he needs to accomplish all of his goals.  Of equal importance is proper respiration.

Because Jacob was born 4 months prematurely, his lungs were not fully developed.  He was on a ventilator for 74 days.  While this technology was absolutely critical to his survival, it also caused damage to his lungs.

The brain must have adequate oxygen to function properly.  So, in order to achieve proper brain function, we must improve Jacob’s breathing.  To accomplish this we do 2 therapies daily; masking and respiratory patterning.

Masking is done every 5 minutes throughout the day with a goal of 40 masks each day.  During this therapy, Jacob rebreathes his own air for a short period.  This has 2 outcomes.  First, it utilizes the natural reflex triggered by sensors in the brain to breathe in more quickly and deeply when the carbon dioxide levels increase.  This helps Jacob strengthen his chest walls and it also helps to expand his lungs.  Second, by inhaling a slightly higher ratio of carbon dioxide, the blood vessels dilate and take more oxygen rich blood to the brain.

Recently, many athletes have taken to a similar therapy to improve their performance.  The underlying principle is the same.  Exercise the lungs to make them stronger.

In addition to masking, Jacob wears a respiratory patterning device for 2 hours during the day and all night long.  It is similar to the leg compression sleeves that are used in the hospital to prevent blood clots in patients.  The device consists of a vest that goes around his chest and an air compressors with a regulator.  The vest fills with air at the designated rate, rhythm and pressure to gently suggest how to breath.  This feels wonderful and sends the message to Jacob’s brain, “this is how it feels to breath.”  Prior to using the device, Jacob would breath quite quickly and with shallow breaths.  Now, he breathes more slowly and deeply.

At our last visit to IAHP, we participated in a very impactful presentation.  A parent was asked to play the part of the child.  The instructor, playing the part of the parent, asked the child to take 5 large bites of applesauce.  Once the 5th bite was taken, the “child” was asked to run 5 laps around the auditorium.  When that was completed, the “child” was asked to repeat task of eating 5 bites of applesauce.  This was repeated with participants being asked to sing “Happy Birthday” and write their name on the chalkboard.  The purpose of this demonstration was to show how difficult these typically simple tasks are to our children who are not getting sufficient oxygen.

Breathing impacts all function…ability to speak, swallow, see and hear.  These little bursts of oxygen help all of these functions improve.   Even muscle tone and control improve when the brain receives the oxygen it needs to send its messages properly.  This is why the Physiological portion of Jacob’s program is of utmost importance.

What is truly amazing is that while doing all this every single day, Jacob is such a happy, giggly boy!  We are so incredibly blessed!  It may be hard to believe that we get SO MANY giant smile pictures, but that’s just our boy.  He has a light in his eyes that is beyond compare and a will to succeed that is certain to get him to wellness!  Thank you, God!!