Showing posts with label disabilities. Show all posts
Showing posts with label disabilities. Show all posts

Monday, November 16, 2009

Home Sweet Home

"Home Sweet Home" - What does this phrase mean to you? What kind of feelings does it stir inside? The feelings and thoughts attached to these words are as unique and different as the person hearing them. Generally though, there is agreement that the word “home” stirs feelings of warmth, welcome, and a sense of belonging in addition to a place of shelter where needs are met in a caring environment versus the word “house” – a physical place of residence providing shelter.

It was with some of these thoughts in mind that I ventured out to visit two of Washington State’s Residential Habilitation Centers (RHC’s) at Fircrest & Rainier in Shoreline & Buckley respectively. Having heard arguments on both sides of the debate – for & against consolidation & closure of these facilities, I wanted to see for myself and form my own opinion. “Are these institutions really home where people live in a place of warmth with a sense of belonging where their needs are met in a caring environment? Or are they institutional houses where people are placed with their basic needs met?”

I appreciated the courtesy, knowledge and time that each of my tour guides at both of the campuses shared with me as they “showed me a day in the life of a resident.” I had pleasant and meaningful conversations with both of them as they escorted me through the cottages, work sites, and facilities. My opinions and observations of the two campuses are no reflection of their personal kindness and efforts to make a good impression.

I was particularly struck by the locations of both of these RHC’s. They are both located in lovely surroundings on large parcels of land, beautifully landscaped in picturesque settings, yet notably secluded and separate from their surrounding cities and communities. Arriving at Fircrest, I couldn’t help but notice the age of the brick buildings, the overwhelming impression - cold and impersonal. Of course the large unsightly food, laundry, and garbage carts located outside the front doors of each cottage confirmed I had indeed arrived at an institution versus a community. Rainier on the other hand reminded me of an army base or prison facility behind the gates and fences with its old-style stark white peeling paint and red Spanish tile roofs, and buildings connected by long covered walkways.

I found the facilities at each campus were clean and maintained, though they felt cold, stark, archaic, and in great need of modern updates both inside and out. I found it peculiar that décor on both campuses looked like thrift store purchases from many years gone by, curled posters, cheaply framed faded prints, outdated curtains hung on barred windows if at all.

I appreciate the work that these residents perform: sterilizing used Comcast remotes, shredding documents, thrift store duties, and pouring beautiful paving stones. However, the biggest factor I found lacking was the sense of community. I kept pondering, “How will the community ever be able to appreciate the values of self-determination, independence, inclusion, integration, and productivity for people with developmental disabilities if they’re kept isolated and segregated? When was the last time these adults and youth went on a vacation, went camping, saw a school play, or heard the laughter of a child?”

While the historical museum room at Rainier was interesting and perplexing, it was full of historical displays, conveying care yet desperation synonymously. I kept wishing that the children and individuals pictured could really talk to me… what would their stories reveal? Was this place really home or just the only house they knew…?

I was especially interested in visiting the living areas at both schools and met a few residents in person, though I didn't get a chance to hear any of their personal stories. It was explained to me that each person lives in a duplex-cottage with up to 15 other people, 8 per side. Eight people share two bathrooms, one dining room, one kitchen, and one living room on each side of the duplex.

At Fircrest, each living room is arranged with one shared T.V. and generic “Dr’s Office” chairs set around the sparsely decorated walls of the vinyl floor room. Each child, youth and adult at Fircrest has their own very small bedroom, meagerly furnished with a twin-size bed and dresser. Out of the dozen or more bedrooms I visited there, only a meager few appeared personalized in any way. I thought, “Even college dormitories are more appealing than this”. The others reminded me of claustrophobic, cold, and colorless prison cells or hospital rooms, maybe acceptable for a short-term stay but certainly not welcoming or inviting for any length of time. Unfortunately nothing I observed about this campus made me feel the least bit inclined to sit down, get comfortable and have a cup of tea anywhere – a pleasure I instinctively link to feelings of home.

To my surprise, I did observe more texture, color and variety when it came to décor and “home-like” comforts in the Rainier cottages, where 8 residents share two warmly decorated living areas per side with more comfortable furnishings, overstuffed chairs and recliners. I noted that some of the Rainier residents also share larger more personalized bedrooms, 2 to a room, comfortably furnished with warm décor. Colorful attractive home-style dinnerware adorned Rainier’s tables while residents ate from standard melamine cafeteria dishes at Fircrest.

The majority of people in these RHC’s are older adults who came here as students, though more school-aged children and young people have been admitted recently. Dishes, décor, color, texture, curtains, and comfort may sound like trivial details that shouldn’t matter when visiting a school; however, I wasn’t just visiting “school campuses”. I was visiting residences where children, youth, and adults with developmental disabilities live and spend the bulk of their time. These RHC’s aren’t really schools where students are engaged in active learning. These RHC’s are houses set in isolated communities, unfortunately the only houses that many of these residents have ever known.

I was visiting with my “Mother’s” hat on. Staff referred to the residents as family members. But truth be told, any of these residents could be my family member. I have a daughter with multiple disabilities, similar to many of the residents in these two facilities. When Jessica was born with Down syndrome and cerebral palsy, I was given the option to place in her in an institution where she’d be cared for. As I toured the RHC’s, I kept thinking, “Would Jessica be comfortable enough to call one of these cottages home? Would she want to live here? Would she want to work here? Would any of her sisters want to work here? Is this really the quality of life I want for her, for any of my daughters? Is this really where I would want Jessica to spend her life? Would she be happy with the lack of freedom, lack of choices and lack of independence? Is she really safer set apart FROM the community in an institutional house or safer IN a community home?”

I couldn’t help but feel sad and discouraged as I left these properties, wondering if the adults and youth were there willingly or if they’d ever been given a choice. I felt equally troubled for the families who had brought their family members to these houses. What choices and options were they given?

As I pondered the thought of “relaxing and having a cup of tea in the Rainier Cottage”, a wise friend kindly reminded me of the secrets behind these walls – the abuses committed when there is no choice, no freedom, no other option, no way of escape. Are these dear people really at Home Sweet Home or prisoners kept safe inside prettied up institutional houses? MLT is right; I don’t want to drink my cup of tea here either.

As I drove away from these RHC’s, these institutions, these duplex houses, I turned my heart towards the warmth of home. My heart felt lighter as I pondered my daughters, each with her own unique and different abilities - her sense of belonging, her safe place in our home where hugs abound, laughter comes easy, choices are made, freedom is earned and independence is learned. “Home Sweet Home” – the words have never meant more.

Sunday, October 12, 2008

Skagit County Buddy Walk 2008 - Huge Success

This is the photo and captioning from the front page of the Skagit Valley Herald - Sunday Edition for October 12, 2008. Click here to visit the Skagit Valley Herald.

The Second Annual Skagit County Buddy Walk was a huge success, drawing approximately 400 people from around the county. We walked to raise awareness that people living with Down syndrome are equal contributing members of society, (not sick, ill, diseased or worthless "r*t*rds" [I HATE that word!!!] as some are led to believe). They are integral family members and valuable contributors in schools, churches, communities, and workplaces throughout our communities. Their participation adds so much value to everyday life throughout our communities in so many different ways.

Jessica's contribution is one of encouragement. She is the biggest and best cheerleader for her friends and family members. She is always the first one to say, "Good job!" or "Yay!". She thoroughly enjoys watching others succeed, whether in sports, music, at recess, in school, whatever effort she observes. Thank you, Jessica, for reminding us that we can enjoy life as we encourage others to do the same - "life is about enjoying the success of others... not all about me and my success".

We couldn't have ordered better weather for the event as we walked and celebrated the day's festivities in the warmth of the Fall sunshine, hardly a cloud in sight with just a nip in the air - perfect light sweater (& rainbow scarf) weather. [Not too sure how Jessica keeps getting the feature picture...maybe it was our bright rainbow colored scarves that attracted the reporters' attention...? For the past two years, I have made scarves especially for members of "Team Jessica" to wear as we walk together. This year the fabric was bright rainbow colors as seen above. Of course, I couldn't be more proud, though, we would be very happy to share the "spotlight"!]

Beyond the obvious, getting to celebrate Jessica for who she is... Yesterday was so much fun for me as a parent of a child with Down syndrome for so many other reasons as well. First, it was a huge blessing and encouragement to have so many of our friends, family, church family and community contacts come out and walk with us. It is this kind of love and practical support that makes all the difference in the world when raising a child with special needs.

Second, it is always a joy to see individuals with Down syndrome enjoying life at all ages and stages - from the youngest to the oldest. There were several musicians (with ds) who assisted Jon Dalgren and his band "Out of the Ashes" as they kept us all entertained with lively, amazing music throughout the day. These young (and old) musicians are very talented and obviously thoroughly enjoyed their most important role of the day! The day would have been very boring and dull without them!!! Thank you, Jon & band for the gift of music!

Thirdly, I was so inspired by the positive attitudes of all the volunteers and walkers! The way that so many community members came out and volunteered of their time, energy, and financial resources to make the lives of our ds community so much brighter was truly motivating. I heard so many compliments about the organization of the event and how it reinforced the message: "steps for a brighter tomorrow". One walker commented that, "I didn't realize until today how many people there really are in our county that have Down syndrome". Yes, there really are and there are many, many more who weren't even present.

So to each one of you who supports and encourages our community members with Down syndrome, from the youngest to the oldest, not only for annual events like the Buddy Walk, but on every level every day - in our hospitals, schools, workplaces, recreation venues, homes, and elsewhere - THANK YOU for taking "steps for a brighter tomorrow"! Each one of you make a difference! Thank you!