MOVIN' FOR MONEY

by
Peanut Butter & Jelly

As I watched his shoulders smoothly roll back and forth, his arms slicing through the water, his strong legs kicking behind with hardly a splash, I remembered that my son was always more graceful in water than he was on land. As a toddler he crashed his way through life with more than his fair share of thumps and bumps; a "toe runner" the neurologist called him, and then something about it being a developmental indicator that had something to do with delays, and then there was this low muscle tone thing, which was really hard to understand because this was the most active two-year-old on the planet. A whirling dirvish, my grandmother called him. He would buzz around a room with such high level energy that his fine blond hair would be sweat-soaked and stuck to his head. Then we discovered the pool. There was something about the water resistance and being horizontal that set his "body map" right. Maybe it was like a return to the uterus, you think? Whatever it was and is, if you watch him walk, you can tell there is something "different" about him. But when you see him swim, you see he is all right with the world.

So I watched him, and the people he has grown up with for the last twenty five years, as they swam laps at the Meadowbrook Pool to raise money for Seattle Parks Specialized Recreation Programs. Most of these people, like my son, are completely at home in the water, and in their own skin, their own joy, as they experience the freedom from gravity and the joy of play on purpose. There is no competition here. Every participant has raised money by pledging to swim a certain number of laps and getting friends and family members to sponsor them. I am envious that nobody cares what they look like in their bathing suit, nobody has body hang-ups, nobody cares how fast they swam a lap or if they rested between laps or even in the middle of a lap. It so isn't the point. And it so makes me wonder if, in our competitive, hurried, false-beauty conscious world we do get the point.

The participants who didn't swim walked laps around the track, or rolled around it in their wheelchairs. The high school marching band gave a great performance, and the laid-back atmosphere of the day was a reminder that we might all slow down once in awhile and lap up life for all the right reasons.

peanut butter & jelly

It is not too late to contact Seattle City Council Members about retention of the Specialized Programs in the Seattle Parks Department budget. They won't know how important the programs are unless we tell them.
Saskia

Seattle Parks and Recreation Specialized Programs

I attended the Seattle City Council Finance and Budget Committee on May 4, 2010. I, too, as the previous woman who posted about this meeting, was amazed at the number of people in attendance. I believe there were well over 600 people crammed into the cafeteria and there was an "overflow" room next door.

I attended this meeting (my first ever) to support our Seattle Parks and Recreation Specialized Programs. This program has been instrumental in our son's life. I am always amazed at the interesting and fun activities that they undertake. Our son participates in the Saturday Activity program and the Summer Day Camps at Woodland Park. These two programs are just a snippet of the many offerings to choose from. There are many exciting programs for both children and adults.

I can not say enough wonderful comments about this program - there is nothing else like it. They have never said "we can't take him." No other program is available that will work with the various issues that our son deals with. These programs are for children aged 4-21. It took us until Thomas was about 9 for me to feel comfortable sending him - not because of them but because of me. I had nothing to fear - he has attended almost every Saturday activity and day camp now for 6 years.

Even now with Thomas living at Frances Haddon Morgan Center, we pick him up on Fridays and he attends the Saturday program. He grabs the pamphlet the day it comes in the mail and memorizes the whole schedule. He has had so many exciting trips that he would never have been able to go on if it was not for these wonderful people! This is just a sampling of the trips that they have taken: Oaktree Movie Theater to see a movie, Outback Kangaroo Farm, M-Bar-C Ranch on Whidbey Island, Storybook Theatre, Sky High Sports, Boehmes Chocolate Tour and XXX Rootbeer, Point Defiance Zoo and Safeco Field.

Not only are these great activities but Thomas also has real friends that he has met through the parks department. It is truly a community event for our family members! In addition to the benefits for Thomas, our family has also benefited - it has been wonderful respite time for us.

This Sunday, May 16, is the annual "Moving for Money" fundraiser for the Specialized Programs. Please consider supporting this program to enable our family members to continue being involved these precious activities. Also, please invite your children's friends to also participate - you won't regret it!

I have attached a link to the Spring Catalog of activities for Adults and Children. There is also link to the video of the Seattle City Council Budget and Finance meeting. It lasted several hours but at about time 21:00 and about 51:00, you can see member of our community speaking in support of the Specialized Programs.

Thank You

www.seattlechannel.org/videos/video.asp?ID=2101025

http://www.seattle.gov/parks/specialpops/Spring10.pdf

Cheryl Felak Joins Developmental Disabilites Exchange

Today, I am delighted to introduce Cheryl Felak as a new author of Developmental Disabilities Exchange!

Cheryl has been a contributing reader since the blog's beginning in January. I have been inspired by her seemingly tireless energy and enthusiasm as well as her thirst for answers!

Cheryl comes to us with rich experience and I know readers will be eager to know about her; but I would like to leave it to her to tell about herself.

Welcome aboard, Cheryl.

What's A Mom & Her Boy To Do?

WHY NOT TO CUT THE SEATTLE PARKS BUDGET

A Personal Story
By
Peanut Butter 'n Jelly

You have to understand that it would ordinarily take an Act of Congress and a College Football Team to wrestle my son into a suit and tie, but after twenty years of participation in Seattle Parks and Recreation's Specialized Programs, when someone handed him an invitation to a Public Hearing that involved possible budget cuts to his beloved Wednesday Night Starlight Socials, Monday cooking classes, Saturday Travels, and some pools might be closed (gasp! we've already lost the one at Fircrest), he was HOT on it. He brought me the flyer, waving it in the air, unable to speak, reverting to his sign language, and I had to remember back to the days before he learned to speak when these opportunities to be out and integrated were the few chances he had to be with his "Buds", his "Peeps". And the few hours I had to be either with other parents, or to have a few hours for myself.

But yesterday morning The Boy got up on his own, showered and shaved, like he would usually do only for church on Sunday, and suited up for this opportunity to tell the City of Seattle how important Parks Special Programs are to him. We had talked about it the night before, we had each written down our speeches on 3X5 index cards, we had made a sign with a big AX that said Don't Cut Parks Spec. Prog, so we could wave it from the audience.

Now, we have attended many Shoreline City Council Meetings, mind you, and signed up to speak, so we thought we were prepared. But this was Seattle, and we had been misinformed about the purpose of this meeting; it wasn't just about the Parks budget, it was about everything from Pea Patches to Seattle Center. There was a guy there with a sign that protested ticketing parked cars, saying, "My car is my home".

And the biggest problem was that this was the biggest crowd we had ever encountered! After driving around for twenty minutes following flourescent-yellow-vested parking attendants, we arrived at a cacophonous cafeteria filled with HUNDREDS of milling people, somewhat grouped by signs indicating their interest, but mostly making it abundantly clear that if you had a snowball's chance in hell of a spot at the podium it wouldn't happen before midnite in Hawaii...

My son was already shaking. It was almost 5:30 p.m. and he had dressed for this event at 5:50 a.m. He had written his speech the night before. He was pressed by a closely bumping crowd of people around him, all talking at once. Like having your radio station tuned just slightly off and nothing comes in clearly, everything was just a buzz, a cafeteria with venders cranking out lattes, and the smells, and there was no seating left and no-place-outside-and-it's-raining...and here comes the seizure, I just know it, I see it dancing in his eyes, I've lived with it since he was ten years old, so I take his arm, wipe the drool from his mouth with my sleeve, he can still walk, I know he can...

I take the speech notes from his hand and drop them in the "Written Comments" box as we pass by the sign up table...

This kind of seizure is called Partial/Complex, and he's only halfway here, but there is a lot of facial twitching and salivation and it looks way worse than it is. Anyway, what I believe is that he is somewhere else when that happens, so I'm in charge of his body, so I need to take it home, so that's what I did.

But the next day, my son got on his computer and looked up on King 5 News (because he saw them there at the hearing) to see what had happened. He said that mostly it was businesses saying don't raise our taxes, but that some of his friends said please don't close our pools.

So there it is then...
Peanut Butter & Jelly

PS: The Boy will be swimming laps at Movin' for Money, Sunday, May 16th - 1-4 p.m. at the Meadowbrook Pool (10515 35th Ave N.E.) to raise $$$ for Specialized Programs for Seattle Parks.

You may be swimming or walking a similar path, eh?

Note by Saskia: If not for this description, most of us, who do not have loved ones in the Parks programs, would have no idea how important they are as activity resources for people with DD! There may still be a small window of time to add your voice to those of this Mom and her boy. I encourage you not to hold back. For contact info to support continuance of the parks programs click on the title of this post or go to: www.seattle.gov/html/feedback.htm.

Life & Work of Dr. Stanley Greenspan

Autism & DD Pioneer

Speaking from the points of view of a sibling who once was part of her sister's caregiving family-team, current guardian, nurse, and former developmental therapist, I fully endorse the basic maxim that learning must wait on maturation. What this means is that a person cannot learn something until his/her brain-neuro-muscular system is sufficiently mature to support the learning. With developmental disabilities, the challenge is: how best to support the brain-neuro-muscular maturation. And, as anyone interested enough to be reading this blog already knows, no two individuals are alike, so the approach to each must be responsive to the cues and clues provided by the person receiving the work.

Here is an excellent article honoring the life and work of Dr. Stanley Greenspan who, the article recognizes, made significant contributions to developmental work with children who have autism. I would recommend it to caregivers and family members of people with other developmental disabilities, too.

From my 61 year-old sister, Kathy's experience, I know that the article's use of the word , "children" should be generalized to "people" and the word "autism" should be generalized to include other forms of developmental disabilities.

Much of the article's description of Dr. Greenspan's methods also can be said of the Feldenkrais treatment (another approach to developmental, neuro-muscular/cognitive work) that my sister receives: Her diagnoses include cerebral palsy, cognitive delay level: 2-3years old & epilepsy. Even at her advanced age, her progress with this work has been consistent to that described in this article pertaining to children with autism. Credit must also be given to the reinforcement by her caregivers in the ICF/MR-NF where she lives and to the sensitive work of one physical therapist, in particular, who, early on in her work with Kathy, commented that she almost always sees cognitive & verbal progress in children when they are finally able to walk. It made sense to her that Kathy as an adult would be having a similar response.

Dr. Stanley Greenspan Dies,

Founder of Floortime & Developmental Approaches
To Autism Therapy
Source: AMDC Autism Examiner by Mike Frandsen April 28, 4:02

"Dr. Stanley Greenspan had a profound impact on developmental approaches to autism therapy.
At last November’s annual Interdisciplinary Council on Developmental and Learning Disorders conference in Bethesda, Maryland, Dr. Stanley Greenspan was walking and talking a little bit slower than he had in previous years. The reverence and respect that the audience had for Greenspan was palpable, and at the end of his speech, the crowd gave him a standing ovation. The people in the audience knew they were witnessing something special. 

Greenspan, the founder of Floortime and the Developmental, Individual Differences, Relationship-based model (DIR) for autism, died yesterday. 

Greenspan established the ICDL in Bethesda to advance the identification, prevention, and treatment of developmental and learning disorders. A message on ICDL’s website calls Greenspan, “the world's foremost authority on clinical work with infants and young children with developmental and emotional problems. His work continues to guide parents, professionals and researchers all over the world.”

 To read the full article, click on the title of this post. Readers comments beneath the article are also compelling.
Saskia

KCDDD 3 Year Draft Plan

Parent Comments
by
Cheryl Felak

(Tomorrow, end of business, is the deadline for written public comment on the proposed King County DDD 3 year plan. Have you written & sent your input? If not, your voice is important!
For access to the draft plan and submission info, click on this post's title.)

Cheryl is a parent whose son with dd lived at home until it recently became too difficult for everyone concerned. She reports that he is now thriving in an RHC (residential habilitation center). Here are her comments:

• Improve after-school programs for disabled children - maybe right at the school. Needing to be home every afternoon at 2:30 to get my child off the bus made it impossible for me to work. Since our son is not independent in toileting, many of the afterschool programs, ie: Boys and Girls Clubs, would not take him. Respite providers generally were not available after school – many of them work in the schools and can not get to a respite job in time to get a child off the bus.


• Why are our public monies going to agencies that do not support the needs and choices of ALL disabled? For instance, the Arc of King County is adamant in the rapid closure of the Residential Habilitation Centers. These centers are indeed communities and they are the best option for many of our disabled family members. I would like to see our money spent on promoting a continuum of care and realizing that each individual has specific needs that cannot always be accommodated by a system that does not have the continuum of services in place.


• KCDD Mission – what is the definition of “community life” here? Community is a buzz word that has taken on the meaning of “non-institution”. People need to realize that living in an institution is also a community and one can lead a full life in that setting also.


• Natural Supports – these are much easier to utilize when the child is young. Once the child is a teenager and needs total assist for personal care the supports tend to fall away. This may be more of a problem with those DD children who also have a mental illness. Friends and family members become afraid of the person and are unable to help. This is also probably more of an issue with the need for pervasive support intensity.


• Waiver – make it easier for the client to access the funds – huge waste of time, effort and money trying to find a contracted provider. If money was available to the client, could get needed durable medical equipment, personal care items for a better price and not have to pay a huge mark-up to a third party in order to acquire the needed items. A doctor’s prescription, OT recommendation, etc, should be adequate documentation that equipment is needed – why so much hassle to prove that item is needed for client?


• SOLA – states “providing instruction and support to clients” what about health and safety of the client?


• Huge issues of DD clients who also have mental illness – where do they get services? This is not an issue for behavior management – these need to be handled by coordinated team of a psychiatrist and another healthcare professional who is familiar with the issues of the DD client. Most psychiatrists are only trained in dealing with typically developed children who are mentally ill, not DD children who need total assist for activities of daily living. 


• Outreach, information and Assistance Services – Why is the Arc of King Count y the only agency that KDCCC contracts with? Again, the Arc discriminates against those who need the RHC services to remain safe and healthy – this is a biased position and in order to be an advocate, it is important to look at all alternatives that may benefit the client.


• Advocacy and Leadership Training – Again, KCDDD contracts only with the Arc of King County. “King County Parent Coalition for DD for parents and family members to advocate for a better future in the community for all individuals with DD, learn advocacy skills and network with other family members in King County.” This is a false statement. The Arc of King County does not advocate for ALL disabled. As stated previously, that organization only advocates for those that benefit from living in small, residential homes and excludes those who need the services of the RHCs.


• Seattle Parks and Recreation has been a tremendous benefit to us. Our son has gone to the Saturday activities programs and day camps for years. He absolutely loves them. He has been able to go places and do things that he would never have been able to do if it was up to us, his family, to provide that. PLEASE fund more of this program – they are the best!!!


I have a few more comments in regards to the draft of Developmental Disabilites Services. This may get a little graphic, but I would really like people to understand about the issues and how important Active Treatment is in the care of our family members.

Our son is 16 years old. He has DD/Bipolar Disorder and possibly some schizoaffective disorder. He needs total assist for all personal care. His fine motor skills are extremely poor - he can't write his name, pull up his pants, put on his shoes, etc not only due to motor skills but also due to lack of attention and visual deficits. He does not feel pain sensations.

It takes time and effort and much encouragement to get him to try to put his shoes on. Once they are on, if we don't leave and go where we are going, they will be taken off again and you have to start all over. He needs someone to constantly be aware of where he is and what he is doing to maintain his health and safety.

It took us 2 years of daily trials to get him to sit on the toilet for 1 minute. At this point we are still trying to get him to inform someone of when he needs to have a BM and have a diaper put on. So far, the only time that he succeeds with this skill is for me - at other times he is incontinent. He is very reluctant to inform caregivers of his personal needs if he is even aware of them. It takes a very intuitive caregiver to communicate with Thomas in order to understand what he needs. One needs to watch his movements carefully - this is what indicates if he might be in pain. This care takes time and focus. Without this, it becomes too easy to just do everything for him.

I'm concerned about issues with children like ours who live in a group home or SOLAs. The staffing is not adequate to provide for active treatment. Active treatment is critical in order for progression to be made. Without this part of the care provided, children with needs similar to our son's, would lose skills that they have worked so hard to attain. This would also decrease their potential to be active participants in jobs and or social activites.
Provided for posting by Cheryl Felak as provided to the King County DDD as comments on the draft 3 year proposal.

***

The notice below was first posted April 20. Tomorrow, April 30, by "close of business" is the deadline for comments. Here it is, again, for submission details as well as time and place of public meeting.

Tuesday, April 20, 2010

PUBLIC INPUT NEEDED: 3 YEAR PLAN


KING COUNTY PLAN
2010-2013 Services
For People with Developmental Disabilities
Including
Children : Birth To 3 years

Letter :
From: Campbell, Jane [mailto:Jane.Campbell@kingcounty.gov]
Sent: Monday, April 19, 2010 3:29 PM
Subject: Public Input to King County DDD 2010-2013 Plan

The King County Developmental Disabilities Division (KC DDD) has released the draft Plan for Developmental Disabilities Services for public review and comment at http://www.kingcounty.gov/healthservices/DDD/plansAndPolicies/2010-2013DDPlan.aspx .

The plan covers the period of July 1, 2010 through June 30, 2013.

The plan covers
early intervention services provided for children ages birth to three who have a developmental delay or a developmental disability,

and also

those services and supports provided to individuals with a developmental disability
who are enrolled in the Washington State Department of Social and Health Services Division of Developmental Disabilities who are living in the King County community.


King County invites and welcomes public comment on the proposed draft plan.

~ Written public comment will be received through close of business, Friday, April 30, 2010. A link is available on the DDD website so you can email your thoughts. (click on title of this article to open web page: find download of plan button + input button on right side of web page)

~ A public meeting to discuss the plan will be held by the King County Board for Developmental Disabilities

Wednesday, May 5, 2010 from 9:30 to 11:30 a.m.
Washington State DSHS Division of Developmental Disabilities
Region 4 Office,
1700 East Cherry Street,
2nd Floor Meeting Room,
Seattle.
The meeting location is wheelchair accessible.
Jane E. Campbell
Assistant Division Director
King County Developmental Disabilities Division
401 Fifth Avenue, Suite 520
Seattle, Washington 98104
206-263-9017

*********************INTERACT************

Hybrid Day Care
&
Professional Arts Center
MINNEAPOLIS

Here are excerpts from an MPP Downtownjournal article by Gregory Scott about a program that, without even trying, seems to both stretch and challenge the concept of community inclusion!

"A hybrid day care and professional arts center, Interact admits people with disabilities on a selective basis. Those accepted train professionally in performance and visual art, studying with an Interact staff made up exclusively of artists, musicians, writers and actors, all of who currently work in Minneapolis. Right now, Interact serves more than 90 clients. It is the only day care facility in the nation to offer professional opportunities to the disabled in both the visual and performing arts."

"Since the early 1980s, Calvit has been putting artists with mental illnesses, brain injuries and physical and developmental disabilities on stage, producing aggressive theater pieces that ........"

I came away from the article with mixed feelings. See what you think. To read the full article, just click on the title of this post.

Saskia