Our children lacking communication skills and often deprived of significant motor skills are too often seen as objects of curiosity.  Lacking the means of expression and no valid tools to measure their thoughts, the conclusion is too often drawn that there are none. Those of us who know otherwise see the richness of their thoughts. This is often difficult to convey to clinicians, educators and ever harder to researchers.

As many of you know who follow Chatting with Haley and Poppy we started down a new road; the goal is to put our children at the forefront of neuroscience. Currently,  research and its clinical applications lean almost entirely to diagnostic tools that tell us what is wrong with our children. Applications that allow clinicians to tell you what is right with your child are nonexistent. Unfortunately our review of neuroscience literature confirms that neglect.

Fortunately, there is an exception. Hopefully it bears fruit, it is Insension Project funded by the European Union.

https://youtu.be/G8s8U8lxMcw

 

At the rise of devastating symptoms or the receipt of a devastating diagnosis our lives irrevocably change. All expectations of a normal life seem canceled.

We then delve deeply into literature looking for all reasons why. We become numb reading the symptoms. None of this paves the way for how we cope NOW. We will  be deluged with data and opinion declaring the deficiencies of our children. No where is there to be found data and opinion as to preserved proficincies. We are at risk to succumbing  to the belief  there are none.

The scientific journals accessible through Google Scholar number over 1,700,000 on the topic of autism and you are hard pressed to find any research that addresses preserved functions in our non verbal children upon which we could build a better life. Yet the same techniques that identify deficiency can be put to identifying proficiency.

In moving forward on this project we have scanned what seems to be over thousand of those journal articles. We have learned much. One of things we learned is that not much is known about the latent cognitive ABILITY of our silent children, and it is rare that there is an interest in learning more. In fact, literature in these hallowed journals indicate that our children are excluded from most neuroscience research.

What we have also learned is that the CORNERSTONE OF COGNITION IS ATTENTION. And we know that when our bright eyed silent children are engaged they are certainly paying attention.

AND THAT IS THE GATEWAY TO LITERACY.!

AND  THAT ATTENTION  IS MEASURABLE!

AND THAT ATTENTION  IS AN OPEN  INVITATION TO CONVERSATION!

A year or two ago on a walk through a park with Haley I noticed a familiar  cock of the head as we passed under a tree. She noticed the song of bird that was new to us. We stopped. I told her the bird was calling her name, she clapped and smiled. ATTENTION AND CONVERSATION IS EVERYTHING!

 

 

 

 

 

 

 

 

 

 

“There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard”.

Arundhati Roy

As parents and caregivers of non NON VERBAL children many of us dream of communication with our children; we sense that our children have a rich inner life. Yet we get no confirmation from clinicians who seem not to have the tools for confirmation or if they exist, do not have the urgency or willingness to use them.

Our obligation is to ask the question, are these tools available? Poppy and Haley have come to the conclusion that they are. As we have written before the neuroscience industry has shied away from our children if not blatantly avoided them. We believe  the time is now to use their tools that probe attention, intentions and cognition.

Our guiding principle is to view all people without a voice as aspirational, attentional, and intentional despite their inability to convey those characteristics to us. And it starts with our own children.

Haley and I have spent 15 years together. I know her unique abilities and outlook on life. Having joined her class during the homeschooling period I was blessed with the opportunity to get to know her classmates and observe their unique abilities. We need to embrace our unique position and form bonds with neuroscientists.

To that end, Chatting with Haley and Poppy has taken a new direction. We have over the last year successfully opened discussions with two neuroscience institutes who use non invasive technologies to study cognition. We have ongoing discussions with the National Center of Adaptive Neurotechnologies and recently opened dialogue with the Brainwave Learning Center, a project of Stanford University Education Department and Neuroscience Institute.

Please join us by using the comment section to tell us your stories of your child’s unique skills. They are immensely helpful in turning the tide. Finally we look forward to sharing with you the progress we make

 

EDITOR’S NOTE

The following letter was posted on Complex Care, an email site for MD specialists in complex medical care. It was in response to a New York Times article on this topic.

Hello,

This was indeed a heart-wrenching and accurate article. It is also the very tip of the iceberg.

The nursing shortage will not go away, it has always been a challenge. It is not just the money either. As much as these heroic nurses care about their patient, there is no advancement, poor benefits, limited social engagement and a bit of isolation. In short, it takes a very specific kind of nurse, just as it takes a certain kind of nurse for the OR, ER, ICU and so on.

Here in Texas, if you do not qualify for skilled nursing (a very biased criteria of mechanization) the state’s hourly rate is $11.00/hour for the CLASS program. We were 8 years on the waiting list and we are currently on another list (less hours but $15/hour) where there are over 100,000 clients before us. I am not sure I could hire a babysitter at this rate any more and my son is 30.

Having experienced a catastrophic hypoxic event at birth, now 30 years old, this road is well travelled for us. I am a nurse, so that helps, but his care has prohibited me from working consistently outside of the home. I had 15 years experience in cardiovascular nursing prior to his birth.

I see 2 solutions to this dilemma.

1. The state changes the tier of care and adds perhaps a middle level of care. Codify needs accordingly. A blind, quadriplegic, oral feeding, profoundly delayed, non-verbal, orthopedically and medically fragile patient (my son) needs a skill set quite different than a person with intellectual disabilities or mobility issues but no cognitive issues and so on. One size fits all is just not a strategy. The term custodial care is an insult.

2. The hospital systems could ameliorate some of the isolation and access by creating a respite unit that dove-tailed with home care. An in-house corp of nurses (CNA’s, RTs, PTs?)who could also work in someone’s home. These could be rotating positions. That would answer training, benefits, advancement and a host of other problems. This could be broadened to an out-patient respite facility with the same and more support for families.

The take-away is that no one, except the families, have skin the game in the home setting. Our son is now 30 and if you think getting nurses was hard, just think about caregivers in general. This population is the canary in the coal mine, but there is no institutional will to change the status quo. The loudest voices have the time and energy, and sadly, many of their children have died and so they can. The rest of us are beyond fatigued and are simply feverishly treading water.

I have been on this list serve since its inception. I see this issue come and go. I never see the change we all aspire to.

Sincerely,

Diane Stonecipher, RN, BSN.

There are two guiding principals for special education: a free public education and an IEP tailored individually.

However one must step back and look at public education and it’s principal mission. For the most part it strives to prepare children to read and write; perform skills to enter the workforce while introducing principles and practices of civil society. As you might imagine the vast majority of children will be suitable for such broad goal.

Now faced with the task of educating and providing therapeutic services to children who may always be dependent it should be no surprise that the educational system should reject the medical model for which they see themselves as wholly unsuited. Nor should it be a surprise there is resistance to it.

Simply put, 99% of medical professionals would be unsuited to provide care for complex children.

We are naive to believe competency exists in either our educational or medical models where knowledge of  24/7 maintenance of complex individuals is required. But we are not naive to believe we can bring competency to these models.