Bringing Home Holland: February 2016

Ugh I downloaded the new update and can't figure out where my pictures went!!

God has been a huge blessing. Before our 2nd appointment I asked the head of PT who happened to be there when Remy had therapy what she thought. Her son - was a test subject for when this was being developed!! She also said she would make some calls to to the developer!

Day one we had some issues because of Cav's minimally functional thumbs using the laser pointer. They ride the gyro-stem 5 times and each time they do something along with the ride, to engage the brain more.

In addition to using the light pens to hit the targets they have to say a word - this also changes each time. She wanted him to tell the story of his favorite movie - which he can not do. He also has issues trying to get the pens to work that he misses the targets and then doesn't say anything. We had some kinks to work out. I am still a skeptic and not sure I am seeing much.

DAY 3 - so we did 3 sessions ~ 3 days in a row. I do have to say the office staff is making me nuts. I wish Dr offices would realize that a patients entire perception of their abilities rest on the first 5 min you the walk in the door. Hiring incompetent front desk is such a downfall.

I do like the therapist that helps Cav get into the machine and think through some of the difficulties. on the way to the office we practiced a story so he could use this as one of his speaking parts.

Each session they up the speed on the gyro-stim and today they also did the full summersault - we were a little worried he would get sick but so far so good (and we wait to eat until after.)

Each session is only a minute long so it's really expensive if you figure the $$$$ per hour we are paying LOL! We were assured by the head of PT that there were far worse ways for us to spend our money, and I am still hoping we see some improvement based on the research I posted about yesterday on the vestibular system.

Can still spends most of his time trying to get the targets - especially now that he is flipping around in all directions - so I am a little worried its not working as well as it possibly can. But I am trusting that God has laid this before me so many times, that possibly this is where we need to be.

DAY4 - no gyro-stim today, we are actually done with week 1. I did an extended leave form school for Cav while we did this in hopes that maybe bringing him back, calming his world would somehow help to reset him. They initially said he would be incredibly tired after each session, and I didn't want to add to his stress levels. All that to say he really hasn't been in his typical environment and around peers much. Just he and I LOL! Today all the kids had off from school AND it was gorgeous outside. Typically, Cav has to be supervised form hurting the other kids, but it was so nice I sent him out with them. The first thing I noticed was he actually sought one out and ran after them as they rode their bike on the driveway. I did my typical of sitting in my office and watched, waiting the 15-20 min before he started screaming or hurting someone. The big kids were outside too to ensure someone came and told me immediately.

As all moms do, I got busy, I left the office and went to make lunch, laundry (also a front of the house window, etc. I would periodically yell out the front door to make sure everyone was OK and everyone was playing nicely. You know as a mom, you check out the window, yell out the door but the number of times really doesn't add up, all of a sudden I looked at the clock and realized 2 hours had passed.

TWO HOURS

I can NOT think of a time that he has lasted longer than 20 - - MAYBE 30 minutes without a full blown rage or someone coming in hurt.

TWO HOURS!!! and everyone agreed that Cav was being nice and playing appropriately. REALLY ?!? Seriously, spanish inquisition and not one child young or old said he had hurt them, said something inappropriate or refused to share.

THIS is huge. Is this working? Can I really begin to hope again?? Time will tell.
I keep going back though to the statement "This knowledge is called “gravitational security,”and with this basic sense of stability, children develop emotional security."

So Cav received an autism diagnosis just over a year ago. He doesn't really have typical autism but persistent institutional autism. He met every marker for the diagnosis and quite frankly if it helps us get resources for him then I am fine with the label.

About 4 months after, we went to an autism fair, and looked around, ended up with a huge stack of pamphlets and truly left more confused then when we started. It's a new language, that quite frankly I don't speak. Also because it is institutional and not organic (is that right?) he doesn't fit what people think of autism. Throw a little RAD in the mix and well, we don't have a typical child or a typical "cure."

Before I begin - I want to reiterate that deep down I believe Cav has the most potential out of all our kids. There is something about him. Everyone who meets him on his lucid days - walk away with their life changed. Seriously - at 4 he walked independently within 48 hours of receiving his new legs. Cav's special need is not, nor has it ever really been his legs, his limbs.

That being said - it has been 4 very, very long years. We have tried and failed to help him. We are weary, and as time marches on we are more and more fearful of what the future holds for this child. I am not the same person I was when we went to China to adopt him. We do Not regret the decision of bringing him home - as we know without a doubt he would have been dead 3 1/2 years ago. It's that helplessness you can never understand unless you are standing at the edge of the abyss and your child sinks lower and lower and nothing you do is working. So we look for new things, and pray, and hope.

So I spoke to one vendor at the Autism fair and although their speil sounded cool, the sticker shock alone was enough to deter me. However I took their pamphlet and went on my way. You wouldn't even believe it if I told you almost a year later that stupid pamphlet shows up time to time in my car. I keep thinking I throw it away and then a month or so later there it is again in the passenger seat.

Recently, I was talking to a friend about this program and she had heard form another friend about amazing results her sons friend had, had with this program. She then tagged me on Facebook about the same time the article was going around about early childhood neglect and how different the brains looked on MRI.

I finally decided to call and get some information. Today was our first session. We agreed to it because it has a finite end. We aren't talking open ended therapy over weeks, months and years. It's 3 weeks. 7 sessions. We also agreed because the program was invented locally, by a dad, also looking into the abyss. Desperately wanting to help his daughter. I can NOT find ANY research about this and early neglect. So I put my nursing hat on and sat down with my information, their information and came up with a hypothesis (can you tell we are in stinking science fair season LOL!)

Here goes - Gyro-stim affects the vestibular area of the brain. Ultimately it works along the principles of working the brain until fatigue so that the brain will regenerate itself the same as if we were lifting weights. Ultimately it is hoped that as the brain muscle repairs itself from the workout, it will rewire, or change the wiring. BUT and here is why I am hopeful this will work.

I found this information on nspt4kids.com (I found other sites with similar info but this one was the ~lightbulb where I could check off parts.

http://nspt4kids.com/healthtopics-and-conditions-database/vestibular-processing/

WHAT IS THE VESTIBULAR SYSTEM?

The vestibular system detects movement and gravitational pull, and it provides information regarding the position of our head in space and acceleration and deceleration of movement. It is the first sensory system to fully develop in uteroandis located in the inner ear. The vestibular system has strong neurological connections in the brain and is a major organizer of varied sensory input. This system is considered the most influential sensory system and has tremendous impact on one’s ability to function daily. Directly or indirectly, the vestibular system influences nearly everything we do. It is the unifying system in our brain that modifies and coordinates information received from other systems, and it functions like a traffic cop, telling each sensation where and when it should go or stop. Read a blog on the Vestibular Senses by clicking here.

HOW DOES THIS SYSTEM FUNCTION?

This system affects aspects of physical function like posture, balance, movement, coordination, attention, arousal level, impulsivity and behavior. The vestibular system works with tactile, auditory, and visual information to give us our perception of space and our position and orientation within that space. Children affected by poor vestibular processing may be perceived as inattentive, lazy, overly anxious, or seeking attention. They may have trouble reading or doing simple arithmetic. Functioning at school, going out into the community, performing routine daily tasks, or just getting out of bed in the morning may be difficult for children with vestibular difficulties.

WHAT CAUSES POOR VESTIBULAR PROCESSING?

Poor vestibular processing (or vestibular dysfunction) can occur for a variety of reasons; often, however, children develop a vestibular disorder for no known reason. Possible causes for vestibular dysfunction include: premature birth and a fairly long period of incubation after birth, exposure to excessive movement or invasive sounds as a fetus or infant, neglect (little handling and moving) during infancy, repeated ear infections or severe ear infections, maternal drug or alcohol abuse during pregnancy, or general developmental delay and immature development of the nervous system.

WHAT ARE SOME SYMPTOMS OF POOR VESTIBULAR PROCESSING?

Symptoms and functional difficulties of poor vestibular processing include:

Over-arousal or under-arousal
Excessive movement
Avoiding movement at all costs
Difficulty maintaining attention
Motion sickness (car, boat, airplane), dizziness or nausea caused by watching things move
Excessive spinning or excessive watching of things spin
Inability to read or write in cursive
Decreased auditory processing
Inability to sustain listening without moving or rocking
Problems with balance (static or moving) and/or vertigo
Difficulty walking on uneven ground, and difficulty navigating stairs
Head banging
History of traumatic brain injury, shaken child syndrome, ear cuffing, etc.

WHY IS THIS SYSTEM IMPORTANT?

The vestibular system primes the entire nervous system to function effectively by sending messages to the higher centers of the brain. When the influences of vestibular stimuli fail to reach their destinations, they cannot adequately contribute to sensory integration. One result of depressed vestibular processing is hypotonicity (low muscle tone); when this system is not integrating information as it should and muscle tone is decreased, it is difficult to initiate movement or to maintain muscle tension during movement, resulting in significant difficulties in fine/gross and oral motor coordination.

The vestibular system also tells us where we are in relation to the ground, giving us a confidence that if we jump, swing, or somersault, we know we will hit the ground on our way down. Thisknowledge is called “gravitational security,”and with this basic sense of stability, children develop emotional security.

A child with dysfunctional vestibular processing, who does not possess “gravitational security,” tends to be inflexible, fearful and controlling due to the fact that he lacks control over the world around him and how he moves through it. This child often suffers from social problems as well, as he feels vulnerable to unpredictable situations caused by those around him.

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If I had to list the biggest areas of need for Cav - they fall under this AND um the paragraph above - gravitational security = emotional security. Seriously, why am I just now hearing about this!!

So, we also thought insurance was going to pay for about 1/2. Except our gold plated insurance got rolled over last month and what changed but the therapies. We signed up for our sessions and then got the phone call that ultimately insurance was paying a whopping $5 per session. I wanted to cry, cancel and say forget it. HOW could we justify something that is so controversial, AND will be such a expense for the family. In addition, I am happy to pay for medical things that work. BUT I never want to get to the point where I am throwing money at a problem just to make myself feel better about me. I really had to sit down and make sure that this was NOT what was going on.

Even after the first session, I am not entirely sold on the fact that we aren't doing that. Thus the reason for me actually blogging. But the last 2 paragraph's above (highlighted) push me along, in hopes that this is the answer.

We have 3 appointments this week, and then 2 each of the next 2 weeks.
gyrostim.com, http://www.denverpost.com/ci_23370920/gyrostim-spinning-chair-may-help-concussion-recovery-no-fda-approval-yet

Day 1 - because of Cav's thumbs - using the laser wasn't the best option and needs to be reevaluated for tomorrow. He enjoyed it, and tried his best. By the 4th session we could see in his eyes he was losing it a bit (we were told to expect this). We did get permission from the school for him to just miss class on the days he has treatment as we were unsure of how tired he would be.

I will update tomorrow.