Programs

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.

🦋Non Speaking does not mean no communication🦋 👌🏽 I chose to write about non speaking episodes in my children’s book ‘I’m Autistic & I’m Phenomenal’ because there’s a misunderstanding that a person who is non speaking is non verbal, has no way to communicate when in reality there are many ways, drawing ✍🏽, writing things down ✍🏽, texting 💬, sign language 🤟🏽& there are many many AAC apps for adults and also kid friendly ones, AAC apps are augmentative/alternative communication programs that allow a person to communicate with those around them without speaking 🙏🏽 it’s important for these things to be normalized & not only familar to #Autistic children their families & other non speaking people ❤️❤️❤️

Watching two recent TV programs, I saw a universal law in action that connected the outside world with the internal world of emotion. The first involved human actions in straightening watercourses and the disastrous results further down the line ( ‘The Lakes With Simon Reeve,’ episode three BBC2). It speeded up the flow of water and because the banks of the streams were also built up, it meant that flood plains couldn't be utilised. Hitting built up areas it drowned them with an irresistible wall of water.

The second show, Dogs Behaving Very Badly (Channel Five, with trainer Graeme Hall), disclosed that the way to overcome aggression in dogs was to approach other dogs at an angle as straight on was seen as aggressive.

Both these displayed that whether it was water or aggression, destruction was like a hot knife through butter (concentrated force / anger / determination). The opposite was slow, meandering rivers or approaches to others: Still waters run deep - shallow ones erode, not build up (concentrated versus dissipated energy). Even in the body these processes are seen in constipation and diarrhoea or wasting and depositional diseases.

This connects with something else that I have noticed, namely that anything aimed at an angle, kicks up less mess than if dropped straight down. For instance ash put into a bucket obliquely, creates less dust spilling into the atmosphere than when shovelled straight into the bottom of the container.

We are the night shift.

We are the program

that ran this world before you came.

You are the inexperienced,

Who will write your own programs,

create your own destiny.

We will wait until you ask the right questions,

make the same mistakes we did.

We will explain, while you complain.

We will nurse you through your

blunders, your errors, your nighttime terrors.

We are calm and find your hysterics

our only amusement

(Oh how it reminds us of our history,

our own folly and stupidity

Before the relentless march of truth

over our egos, our dreams.

You will rail against us and call this world,

this life a prison and us as your warders,

not realising that we are just mirrors

held up against your own fears.

We are shepherds, all else is your imagination,

Trying to dump your phobias on our doorstep.

When realisation dawns, you will see the truth

and cry over your past mistakes

but we will be long gone by then.

The door to understanding will have closed

and we will have slipped out into the night,

taking our regrets with us,

for those we have hurt in our attacks

based upon own failures of understanding...

I started drinking when I was a kid. My parents would give me sips of their beer when I would tell them I was thirsty and then laugh at how cute I was when I drank it. I loved the attention. I got drunk the first time at 11, after my sister died. I started drinking full time at age 14. I drank almost every day from the age of 19 until I was 40, except when I was pregnant: twice (and boy, did I not like that).

I “tried” to quit drinking a few times it never lasted. Finally, I joined AA. There, I was love bombed and abused much like the dysfunctional family I grew up in. They taught me I had a disease that was incurable and I was morally bankrupt. Any normal human emotion was a selfish symptom of my alcoholic/addict brain. Since, I was morally bankrupt I couldn’t be trusted to manage my own health. I must rely on a “higher power”.

I was encouraged to stop taking my prescribed medication and to stop seeing therapists and was being steered towards a certain religion. Further disempowering me, and making me dependent on the program, was the belief that I would have to remain dependent on this
“higher power” and be a life time member or I would die.

So to put it simply I had a scientific “disease” that science could not cure, I was too morally deficient to think for myself and AA knew what was best for me. I stayed for 6 months, before I had a falling out with a member when my dad died. The lack of empathy for my situation was appalling.

We had one member who was the leader rather than someone who shared that role with everyone the way the meetings are traditionally conducted. She verbally attacked me, stalked me, harassed me, started a smear campaign and threatened physical harm. Even my sponsor was harmful, she joined right in and so did her husband. I almost got a restraining order, instead I didn’t leave my house for almost a year. Even after, I rarely go out alone.

That experience caused me to finally quit, not because the “program” worked, but in spite of it. I never wanted to be involved with people like that again, nor did I ever want that life again.

So, those outside of the 12 step programs don’t know, and believe they’re great programs. Let’s be honest, that’s what you’ve been taught to believe, and until recently there has been no other choice. For those in the programs, you are desperately seeking love, acceptance, approval, and relief of your addictions (self medicating, that’s what it truly is). You have been taken advantage of, I hope you realize that, and get some real help someday. And for those who left, I’m proud of you, for finding that inner strength that was repressed in you; thinking for yourself, so you will never fall victim again to exploitation and empowering yourself to truly heal.

I’m 6 years alcohol free, and nearly 2 years tobacco free. No higher power did that. Thoughts and prayers didn’t do that. I did that. I can have all the alcohol and tobacco I want, I simply don’t want it. I have healthier choices and better ways to love my self.

I know a lot of people reading this, will experience cognitive dissonance.