The House Where Kathy Lives

MORE THAN JUST A PARTY

Hawaiian theme, marathon kareoke, shy smiles and out-loud laughter, home cooked potluck, old friends, family, professional and regular staff dropping in, and eventually, great giggles from Kathy as she whirled in her dancing wheelchair: The party at Kathy's house started outside on the covered patio, but came inside as breezes blew cooler.

Twenty years of familyhood at Elm Hall is something to be celebrated! Though a few residents have moved to other houses, the manager who opened the house and one AC-3 ("attendant counselor" supervisor) along with 3 of the original residents are still there. Elm has been home especially to medically fragile people (with dd); and so it is not surprising that in that time, several have "gone on to watch over us," as" Manager Mom" put it. (I am calling her "Manager Mom" for this post because I have not asked permission to use her name; and though she does manage the staff and their care of residents, her role is very much that of "Mom." She shows the love of a good mom to residents and staff, alike. Somehow, everybody gets what they need. )

Today, for the first time, I heard about the preparation for Elm's opening 20 years ago. From Manager Mom's speech: "One challenge was: How do you find staff who want to work in an area with total care, fragile people, lots of lifting and all wheelchair?" As it turned out, just enough people really wanted to work under those conditions, and they were just the right staff for the job!

This was the beginning of a housing change at Fircrest; and Elm had just been remodeled to accommodate half as many residents as Fircrest had formerly housed together. The conversion to nursing facility would follow soon after. A careful selection process had occurred so that the right folks would be transferring to the new house. They were to move all-together; so, for 3 months, the entire new staff worked side-by-side with their usual caregivers in order "to learn all of their idiosyncrasies, what they needed and liked in their daily routines as well as how to meet all of their medical needs." This also gave the residents time to get to know and trust their new caregivers before changing environments.

When Kathy moved there from another house on campus about 8 years ago, staff were oriented to her very extensive needs in a similar way. Manager Mom first learned every little nuance of her care, wrote procedures and trained staff, often one-on-one, so that Kathy absolutely got what she needed in the way that she liked and needed it. She is loved there and she feels it. She has been truly blessed to have had the same, wonderful manager-habilitation professional (HPA) and direct caregiver team for all of that time. A few have left and a few have taken their places, but turnover with it's accompanying disorientation has been minimal.

Just one parting thought. As a nurse, I know that having family around can be stressful, especially if they are like I am, wanting everything to be perfect for their loved one. On the other hand, as family, it was essential to my peace of mind to be there on a daily basis to be sure the details of Kathy's needs were attended to in the right way. Manager Mom handled me and my daily requests wonderfully, almost always accommodating them and/or helping me understand why not if she could not meet one. Problems never went unsolved. When, eventually, I did not come as often, I had confidence that Kathy was in the hands of people who knew the importance of each task and, truly caring about her as well as feeling supported, themselves, would not short-change her in their hurry to accommodate all the other, equally important needs of everyone else in their care.

As you might have guessed, I am extraordinarily grateful.
Saskia

Where are the Parents?

This essay is an honest portrail of life of a parent with a special needs child - read this and try not to cry.



Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

"Developmental Possibilities Awareness Month"

Here is some very tastey food-for-thought, from a lengthy report of a workshop presented by the New Mexico Center for Self-Advocacy in Albuquerque. The writer, Jaime Vergara, is the father of 2 children with autism spectrum disorder.

"Based on current wisdom that chaos is at the bottom of our physics, and individual diversity is the universal norm, the view that “disability” is just one's different ability, is ascending. Societal sensibilities looks on individual possibilities rather than on disabilities. "

"The insistence on an Individual Education Plan for every child in Special Education is on target; let us carry it to its logical implication-that every child in the education system requires an IEP of their possibilities!"

"The seed never explains the flower; nor the chrysalis, the butterfly! So it is with people perceived to have been born missing something from the so-called “norm.”

"a disability to be overcome is trumped any day by the affirmation of one's possibility fully embraced."

Quotes & info from SAIPAN TRIBUNE: "Opinion" Saturday, March 20, 2010, by Jaime R. Vergara http://www.saipantribune.com/newsstory.aspx?cat=3&newsID=9808

New at ActionDD & THIS BLOG IS "OURS"

Today, I want to recommend you to some new links and posts @ actiondd.org. (To go to the site, click on the word, "ActionDD" toward the bottom of the list of websites to the left. )

Thank you to Paul Strand, Actiondd's webmaster for the new information. It should come in handy as you write to and talk with your legislators.

I was pleased to receive, off line, a query about why I am not posting more often. Here are my top 2 reasons:

Even though I began it, I do not regard this as "my blog." Instead, it is "ours." I would rather leave some space for all of you than fill it up just with my perspective. I have been encountering a lot of valuable material which will be posted, but also I know some of you have been writing some excellent pieces that could shed light on subjects important to us all. Some of you have extraordinary stories to tell: cautionary and/or heartwarming and inspiring. Some have needs that can be answered by others. As the telling and sharing grows, the blog will take on it's own character, that is, ours, collectively; and more frequent posts will result as people begin to participate rather than just read my posts.

If you are reading this and what is stopping you from contributing is not knowing how to publish in the blog format, you can email your post to me at saskialuciannow@gmail.com. You might have noticed that a few others already have done that!

Namaste,

Saskia