Programs

"Here, on the edge of the Zoogloid nebula, in a system composed of two super-giant planets and a central sun, are to be found several unique creatures. Today though, we are only in pursuit of one - the Aso-Aso. This flying ball propels itself by drawing in air from one end of its body and expelling it out of the other. While this is not its only strange feature, it is none the less unusual in a living being. 

Science has however been unable to examine its other peculiar habit - that of appearing and disappearing at will. Where it goes to we do not know but one second it is there and then in a flash it is gone. This survival tactic isn't pure invisibility as experience by dedicated naturalists has shown. Tracking devices have simply been left behind, when this creature has disappeared, in the few instances where they were successfully attached. Could they be teleporting themselves into another dimension? We simply don't know.

It was thought at one time that they vanished from the surface of this world, to reappear on its sister planet but this was discounted because the other world was discovered to be completely devoid of life. Also of note is the fact that during the mating season, the courting couple as it were, would vanish, returning to this dimension with their young, almost instantaneously. It is as though they require privacy for the mating ritual and giving birth. 

Some biologists thought that they bred through binary fission as with single celled organisms but no proof of this has been found and indeed the very secretive nature of these creatures, means nothing has been witnessed to confirm this theory. It has therefore fallen out of favour and been dropped, quicker than a hot Bodlian Crotchet egg. 

On the other side of the planet, my co-presenter on this epic journey of discovery, the eminent botanist, Sir David Bellowme, will disclose the wonders or the legendary Oso-Oso - a man eating tree as opposed to the free eating man, Sir Bone Grills. Take it away David!"



"Thank you David!
Don't you just love all that squidgy, squelchy water soaked vegetation under your feet and running through your fingers? Well unfortunately, we are here to look for a fabled tree that doesn't actually exist, except in the fertile minds of local tribesmen, who also don't seem to exist. They led our camera crew here and have now skedaddled back to where they came from.

I...What's that funny, hairy tentacle doing, wrapping itself round my left leg? Here comes another from what I assumed was just a local variation of the Araucaria-Araucaria or Monkey Puzzle tree as it is better known. I see the camera crew seems to be following the fleeing natives - come back you cowards!"

We appear to be having some technical difficulties with our link to the other side of the planet, so from all of us here at Life On Other Planets, until the next time, goodbye! “

There is war between calm and fear. The panic that wipes your memory clean and blinds you to reality and the return of peace, when you rightly assess your situation and its unimportance in the vast scheme of things

The struggle to hold onto reality by you and those you care for is debilitating. It is like a boat with a line that runs to the shore and for the patient, it is drifting further and further away from them or shouting at someone in a storm and hoping to be heard. They struggle to get to the shore but drift further and further away every time they relax and then get angry at this loss of connection and struggle to regain what they have lost or at least hold onto what sense / memory they have of what is real or was real in the latter case.

Like children and criminals they have lost all sense of consequences upon themselves and others (cause and effect). They rush around like chickens without heads as they say in this country, acting expediently but with no thought about how it will affect the future. There is no point reasoning with them as you can’t reason with unreasonable people. Others ‘talking’ to them will not ‘see’ what is truly going on as we their carers try to cover up their mistakes, their disaster areas of stupid mistakes (as in stupor, half asleep).

They become a cruder version of their earlier, more refined self. What's our true identity? The Bible put it best - being naked and afraid. By that I mean exposed to reality, with no defences to hide behind (the reasoning mind that has an answer for everything as you pointed out in this particular chapter).

There is no point in pointing out to the unfocused mind (those in a dispersed mental state) what it cannot see and conversely, a highly focused one (concentrated mental state, lost in detail) as they are diametrically opposed. Introverted attention blinds you to the outside world as extroverted attention blinds you to thought (the inner world). For me there are two basic states of being (stillness and silence) and doing (noise and (e)motion).

This is entropy, the light going out of someone's eyes, apathy, defeatism. Like 'Death Shall Have No Dominion' by Dylan Thomas, we need to fight to hold onto reality. Again, like Alice Through the Looking glass, we need to run on the same spot to stay present in the moment (the only constant in the universe being change as someone wisely said and those with the disease have given up the effort in maintaining).

I agree with Michael Gazzaniga that free will is about the individual and moral responsibility is a group view or the battle between the ego (self) and social cooperation (the other): see The Divided Self by RD Laing.

When words fail action takes over (‘Speak hands for me!’ Julius Caesar): last chapter. The illiterate and ignorant have the same problem – failed verbal communication, replaced by violence.

The chapter on illusions I found interesting (read RL Gregory’s ‘Mind and Eye,’ when younger and was intrigued by the yellow dress / blue dress phenomena on You Tube).

Could the Heider-Simmel experiment disclose how an infant views the world? By this I mean that the perception of reality is blurred, unclear and they are trying to make sense of all they sense and that doesn't mean anything to them?

Earworms are proof that we record everything without censorship, despite a belief in personal taste. Bias is the urge to balance things out again (revenge by any other name - you will love me: you will appreciate me (ego). Fear of being ignored): Dinner with Zweig chapter.

Chekhov and left brain: I think this must be seen in court cases too, where the guilty lie to avoid consequences. I remember a true crime report on the news, where the guy confessed to the crime in front of the police but when he got to court his lawyer had persuaded him to plead innocent and deny any part in the crime. It's all down to belief and facts (physical evidence). Do you listen to the conman or witness the facts and stop arguing the case with a defensive liar as opposed to an open and honest one?

Fragmented self? Could the reason the autistic cannot recognise and say for sure that something is the same thing, when viewed from a different angle or in different circumstances, be the cause for their doubt? With regards to how the disease can bring out the best or worst in people, think about how alcohol does the same. With regards to insight, remember 'Life can only be lived forward but understood backwards' as Kierkegaard said.

Yes fighting the decline is an attempt to stop it but what it really stops is insight into the disease (proximity versus distance - long sight versus myopia: you can't observe what you are on top of and interacting with).

I read a very good book on stage and street magic by Alex Stone (Fooling Houdini), which pointed out that although people knew they couldn't win in find the lady (that it was a trick), they still tried. I also found the idea that random events leads to addiction, intriguing.

Several things interfere with consciousness and blunt our perception (being tired, suffering from dementia, having a fever, being involved in a traumatic incident etc). For instance I didn't realise my flies were open until I went into a coffee shop and relaxed, while reading your book this morning.

Anger sometimes comes from what you would have done with your life, if this had not come along (On the Waterfront' I could have been a contender, Charlie' Marlon Brando talking to Rod Steiger) or the sadness of defeat and feeling sorry for yourself (ego again and not being good enough).

In the Borges chapter, Funes is suffering from a stream of consciousness (continuous flow) effect, which is the same I believe as autistic savants (no censorship, like dementia patients with their lack of inhibitions i. e. access to all memories, all perceptions).

Falling into the pit of hell with your partner - the darkness blinds you both. If you left them to fall on there own, you would remain as you were, with a slower decline from natural self-aging but if we care, we become like Orpheus trying to rescue Euridice from Hades.

We all age and decay, mentally and physically (‘Everything put together falls apart’ Paul Simon). Some just do it faster than others (And Death Shall Have No Dominion, by Dylan Thomas says it all: you surrender to death meekly or fight for every last breath as an individual, society or world - even cultures grow old and die as do life forms (where are the dinosaurs now?).

By the way things are binary in that we take things apart to understand them and put them back together again to make them work – ask surgeons and garage mechanics (analysis and synthesis). There is being present as opposed to being absent (nobody at home). Defensive (fast) reactions as opposed to considered (slow) thought.

Originality should be the touchstone of consciousness. That is original ideas or unexpected actions, not recordings or programs (sensing new things too, shows that you have a live, in the present being, not someone stuck in the past acting and thinking as they always have).

By the way my favourite book about family dynamics, was Eric Berne’s ‘Games People Play’ as it is about the roles people assume in life and how it leads to interplay amongst adults, children and parents (victim / saviour - dispassionate adult - irrational child (ego) that just wants its way all the time etc).

This is our daughter Jessica's story and the narrative for many adults who require assistance with all daily living skills and have a severe intellectual disability.

Finding the Right Fit

It's bewildering how we lose the dedicated funding and energy invested in including individuals like Jess in public schools once they reach age 21. Typically, opportunities for Jess and her peers in adulthood confine them to self-contained classrooms, with most activities being exclusionary. Finding the right fit after an inclusive public school education is difficult.  

When our daughter, Jessica, was born in 1982, we didn't know she had a diagnosis. She was our teeny first baby. Jess came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her Peanut at the time. We discovered, much later, that Jess had a rare chromosome deletion and was delayed in all her milestones. Our daughter, age 41, cannot care for herself, uses a wheelchair, is non-verbal, and has a severe intellectual disability. Jessica is also the brightest, most joyful star in the room. 

Early Education

 Jessica's early education encompassed numerous schools and classrooms. Federal Early Intervention for Infants and Toddlers was not enacted until 1986. It was still 1982, and we enrolled Jessica in a local infant stimulation program for babies with developmental delays. She transitioned to a special education classroom in a center for children with special needs at age three, and at age five, she went to a school district Board of Cooperative Education (BOCES) program. The program was over 30 minutes from our home, and Jess remained in that program, which moved from district to district until she was twelve.  

Meanwhile, I worked with our local education district, Committee on Special Education (CSE), to include Jessica in our neighborhood middle school. Like the line from the old TV show, "Cheers," we wanted everyone to know her name.   At Jessica's CSE meetings, we planned intensely for her return to the district and entry into middle school. The school prepared to welcome its first student in a wheelchair.

Success

One of the first times I knew this was a success was when I took Jessica to our local food market. Some of her peers were in the store, and instead of getting the "who is that in the wheelchair" glare, we received a warm greeting. The kids approached Jess, called her by name, and said she attends my school. This gesture brought tears to my eyes.  

High school was quickly approaching, and in our and the district's opinion, Jess needed another change as she prepared for graduation and adulthood. Full inclusion in high school would not have the same benefits as in the lower grades. We believed Jess would not get the same opportunities for friendship and socialization in a secondary school math or science classroom.   

Once again, Jess returned to BOCES, but this time, the setting was in our neighborhood school. Her teacher, Leslie (Les), set up a reverse inclusion program whereby interested high school students entered Jessica's classroom and assisted. Jess joined the chorus during high school and participated in other typical activities. She still hums the music scales learned in high school chorus over 20 years ago.

Prom Date!

Jessica's next transition was to an adult day program. At her adult program, we hoped that Jess would feel useful, have friends, laugh, hum familiar tunes, and continue to maintain the goals she achieved in high school and strive to reach new heights.   Adulting in Jessica's world is far different than in public schools. The regulations are less rigorous than in public schools, the staffing requirements are inconsistent, inclusion is non-existent, and the hope for daily experiences in the community has yet to come to fruition.  

WHAT WAS ALL THAT INCLUSION FOR  

Many of Jessica's peers, who have more life skills, are in supportive employment and other inclusive community adventures. Yet, individuals who require more daily assistance often get stuck in exclusionary settings.    Jessica's original adult day program started differently. They explored the community, took field trips, and left the building. We connected with many staff and developed relationships.

A lot changed after Covid, and Jess was out of the program for nearly three years. A few months ago, I visited Jessica in her current classroom, saw the lack of interaction and activity, and knew it was time for a change.

The system is broken. New staff often enthusiastically start their positions, hoping to make a difference in somebody's life. Yet, the red tape and restrictions usually knock them down. This profession requires a significant level of responsibility, yet the wages provided are not commensurate. 

Adult programs require a culture of creativity, respect, collaboration, and encouragement. Our daughter, Jessica, loves meeting new friends, cherishes music, and enjoys outings. A way to incorporate more community activities into a daily program should exist.  

Jess has been in the same day-habilitation program since graduation in 2003. After##@ 20 years, we have decided to transition to a new program.  

We HOPE for the future.#RareDisease #Parenting #Transition #SpecialEducators #SpecialNeeds #dayhab #dayprogram #Disability #IDD #Hope #FamilyAndFriends @amanda-buck @amanda-hvass @amanda-snyder @breecoffey @cherieehlert

I'm struggling with accepting that my chronic illness has left me disabled. I feel that there are more are more possibilities that could be explored by my neverending list of doctors, however none of them seem interested in moving forward with any type of diagnostics. I'm basically being told, just accept it. I've started therapy in an attempt to dig myself out of this hole of utter despair, but it's really difficult when I still have so many unanswered questions. I'm two years into this struggle, and I'm just filled with resentment, frustration, and anger, after being dumped from one doctor to the next, only to have to start from scratch again and again, I think the message is loud and clear that nobody is going to help me, nobody listens, nobody cares. It's been traumatic, and dehumanizing. I have to use assistance programs, and everything just seems so impossible. I'm living in crisis mode all of the time, constantly worrying how I will be able to pay the bills and keep everyone fed. The reality is there just isn't enough. Not enough money, time, food, gas in the car..... Living in a world of "not enough" eventually I started to believe that I am not enough. I'm not worthy of receiving assistance, I'm not worthy of continuing to explore possible causes of my illness, and I'm not worthy of carrying on my life because I cannot provide. The horrors persist, yet so do I.