EDITORS NOTE
As parents and caregivers we are the foremost stewards of our children’s lives. We should take note that the science which our clinicians  represent often embrace the same cultural values of the population at large. It is time for us to shine our light upon the disparities and inequalities in science and clinical practice. We must critique professional work, giving credit and criticism where it is earned.

We will introduce professional literature here unfiltered. Abstracts at the beginning and Discussion or Conclusions at the end hold the keys to their essence.

IMPLICIT MEASURES OF RECEPTIVE COMMUNICATION

CONCLUSIONS
We demonstrated that EMs, PD, and ERPs can provide implicit estimates of receptive vocabulary knowledge in individuals with Level 3 autism, although the participants differed in their individual sensitivity to specific measures, and some measures proved more able than others in discriminating ‘known’ and ‘unknown’ vocabulary between participants. This variability highlights the importance of tailoring these assessments to each individual. Despite the inevitable heterogeneity of our limited number of participants, this work is one of the few studies to use sophisticated neuropsychological methodologies, such as EEG and eye tracking, to examine language processing in individuals with Level 3 autism, thereby offering a rare insight into this population.

 

Poppy has taken to talking to me about some serious things lately. Some are light and make me smile. He told me about the time my Mommy asked him if he would take care of her baby after she went back to work. He said yes and then realized it would be full-time. Ops!  Well, he got a bigger oops! when I came along!

But last week there came a day when it got real serious. You see, I have taught him a lot in my 14 years and even more in the last year as he does my homeschooling. We make a good pair and he, for an old duffer, has learned all the ins  and outs of school even the therapies. [Read more…] about Discrimination in Vital Research

It was a cold winter evening in January  of 2011. I was at Boston Children’s Hospital where my granddaughter Emily was being treated for the loss of 98% of her small intestines, along with 75% of her large. Only two months old, she has spent most of her two months in the hospital.

She will be here a few more weeks and will be discharged with a permanent IV line, a tummy tube and an ostomy bag. I am here with her father for three or four weeks as Mom is hospitalized back home in Albany,NY

It was a fairly routine day for Emily, some x-rays to check the positioning of the IV (PIC) line.  Within a week she will have surgery for a g-tube and they will work on monitoring her nutrition.

When I left the hospital this night to walk Longwood to Brookline and the Yawkey House, I got the yen for a cold one. I stopped at the Longwood Inn which is next to the hospital. As you might imagine, at any given time it is filled with families of the hospitalized, hospital employees, vendors and consultants working at the hospital. Last night was no different.

The bartender asked if I wanted a menu and a woman seated nearby commented that the food was absolutely great. I had already eaten but it was nice to know that a good place was so close. As all things in the Longwood Area are child health related, you are never more than a foot or two from people who share the pain of catastrophic children’s disease.

The woman was a mother of four and she had been here a week with a daughter with an extremely rare disorder. The disorder was known to be confined to one organ. Her daughter’s illness was not so confined and raging throughout the child’s body, destroying many organs. It mystified the best MD’s in the world till now and  she was eternally grateful to the staff at BCH for embracing her daughter and herself; as fear of the unknown had driven previous practitioners to run the other way. Needless to say this had been a long road for her and her daughter, in and out of many hospitals with many misdiagnoses. We talked a while swapping family medical stories. Despite the adversity she faced she had many questions about my granddaughter’s risks and had questions about my other granddaughter who had a severe neuro degenerative disorder.

Parents of children with rare and complex disorders have a unique bond. We too often face problems that shouldn’t be: the loss of the perfect child and the prospect of a much too early death.

Toward the end of our chat she looked directly at me and said: tell me about your fears for your granddaughter’s  future. I realized immediately that this question was an act of love of a mother willing to address the death of her child in the most unguarded and vulnerable manner conceivable  I summarized, as best I could, the grave mortal risk that Emily faced over her first few years. I asked her about the future she saw for her daughter. She looked directly at me and said, “It may not be long before I take my daughter home for a service and then I will take up raising my other three children”.

I walked slowly home with a lump in my throat. I woke up around three and I could still see her face clearly. Her eyes were filled with tears; her face was strong and determined. Her name was Bridget.

For the last month Poppy and I have been homeschooling. Sometimes it gets a bit tense since we can both be knuckleheads. If you ask the shrinks how we communicate they don’t have a clue. What mystifies them is that we communicate at all, since I prefer not to talk. Poppy  has done a deep drive into the literature about cognitive testing and forms of communication utilized by us kids (non verbal) and our caregivers. He sums it up this way. Unless and until you read The Helen Keller Story and see the world through the eyes of Helen Keller and Anne Sullivan you shouldn’t be swinging a bat in this ballpark.

Don’t take this the wrong way. There is a considerable amount of literature out there that deals with our cognitive issues and communication skills, however when put together it represents a jigsaw puzzle, with many pieces missing, no picture on the box and no one agreeing what the picture should be.

So we are going to try to assemble a few pieces, here and there and propose some preliminary sketches for the cover of this box.

Before children speak their first words, they communicate using various gestures, body movements and vocalizations. These developmentally early forms of communication have been referred to as prelinguistic or presymbolic communication

The reason we note this quote is that it acknowledges there are developmental steps in language progression. And only you know the code that flourishes in the tender years.

Have you been informed  about steps before language? Do you suspect that there is communication in your child but it is difficult to describe? Have you seen communication skills but are frustrated that  teachers, therapists and clinicians do not? Could you describe your child’s communication that has amazed you?

We would love to hear from you.

Poppy has a habit of thinking out loud as he sits with me. He speaks about things we like to write about. Our topic today is one of his more repetitive themes, and one I never get weary of hearing.

Simply put, it is that I have immense value as I generate so much love. He tells me this all the time, and in many different ways. We have finally found a handful of academics that speak our language and we are going to share with you their message.

Before we do that let us stress that this issue of value is fundamental to our health; if our immediate community assigns to us only disability ratings, that can be depressing. Our community needs to see our value and hear our inner life. And they need to talk to us about it. Let’s begin by reviewing how we are characterized and whether it expresses or implies our value.

The APA (American Psychological Association) describes intellectual disability as follows:

…It is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. 

We are measured by normative tests. That simply means the tests have been standardized so that test-takers are evaluated in a similar way, no matter where or how they live or who administers the test. We do quite poorly here; my test grades couldn’t be any lower  and therefore I serve my educational sentence in a segregated class in a segregated building.

We are also assessed. We can’t be assessed by a clinical interview for obvious reasons, therefore a psychologist speaks to our teachers, therapists and parents and possibly checks medical records and other reports. Those assessments seldom, if ever focus on our value and seem never to hear our voice.

So far we are not doing very well. As they say in the business, our outcomes are poor, What’s up here.? Where  is my voice?

Here’s where our friends come in.

We strongly believe that voice does not simply mean speaking. Instead, voice can mean children’s preferences, opinions, and agency expressed over time and across contexts.” (Simmons and Watson PMLD Link Vol 26 No. 3 Issue 79.

Let me translate that into my language, I will never be a  performer but I know a good performance when I see one. And I like to see as many performances and performers as  can. I know both good from bad, more from less. I see, I hear, I judge.

And so I save the last word for those who test me. I am willful and when I don’t want to do something I get it right every time. And when I do something requested it is usually only for those I love and respect. Makes sense doesn’t it, it’s a trust thing.

So let me throw out a challenge to one and all. Listen at all times to those voices; note our preferences, opinions, and don’t forget our subtle actions that convey our intentions. We do these things not to entertain, it is our voice.