Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

If there is no comment box below the post, click on
"# comments." It should open one.

TO CONTRIBUTE: add comments to posts in comment boxes &/or submit an article. Comments may also be sent for posting on your behalf. Email address as follows:

EMAIL: ddexchanges@gmail.com

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send request to email address, above.

WEB LINKS: to access other websites of interest, in the list to the right, just click on the underlined name.

FOLLOWERS: interested people, websites, organizations, businesses
who follow our discussions & choose to be public about their support.
Become a follower. Public support is a good thing!

Saturday, May 29, 2010

Autistic Boy Arrested After Confrontation With Officer - Sacramento News Story - KCRA Sacramento

Autistic Boy Arrested After Confrontation With Officer - Sacramento News Story - KCRA Sacramento

This story brings tears to my eyes and fury to my soul - I think about children that I know who have been unjustly arrested and treated like criminals due to their disabilities. This is what our crisis teams look like sometimes. Even upon discharge from the hospital, we were told there was nothing else they could do and no where to send our son. The suggestion from DDD and hospital staff was to take him home and call the police if we needed assistance!

I know that this was told to us because they had nothing else to tell us - there was no place for him to go and they were right, the hospital wasn't helping. There were many tears in the room at that discharge meeting and not just mine. Everyone felt terrible with their hands tied and no resources available. Several of the members called me that night, still in tears about what had not happened. It's a tragedy and I'm fired up to change things.

We need to be advocates for real change for the benefit of our family members - not sugar coating and patting the backs of services already in place. We need to look beyond what we have.

Tuesday, May 18, 2010

ActionDD team for NAMIWalk

NAMIWalk - Seattle, WA

ActionDD formed a team to walk in the fundraiser for NAMI to help bring awareness to the issues that many of our family members face - being dually diagnosed with both a developmental disability and mental illness.

NADD, an association for persons with developmental disabilities and mental health needs, is an organization that I recently joined to gather more information. As you can see, this population is not a small segment of the whole DD population and really needs to be advocated for.

Mental Health Aspects of Intellectual and Developmental Disabilities:

"Persons with a dual diagnosis can be found at all ages and levels of intellectual and adaptive functioning. Estimates of the frequency of dual diagnosis vary widely, however, many professionals have adopted the estimate that 30-35% of all persons with intellectual or developmental disabilities have a psychiatric disorder. The full range of psychopathology that exists in the general population also can co-exist in persons who have intellectual or developmental disabilities.

The co-existence of intellectual or developmental disabilities and a psychiatric disorder can have serious effects on the person's daily functioning by interfering with educational and vocational activities, by jeopardizing residential placements, and by disrupting family and peer relationships. In short, the presence of behavioral and emotional problems can greatly reduce the quality of life of persons with intellectual or developmental disabilities. It is thus imperative that accurate diagnosis and appropriate treatment be obtained in a timely manner."

Monday, May 17, 2010

Special Need Subdivisions

I found this article on the ActionDD.org website. This looks absolutely terrific - it's things like this that can happen when people dream!


Families seek approval of special-needs subdivisions

A bill that would allow subdivisions catering to the developmentally disabled raises questions on how best to integrate those with special needs into society.


Parents of developmentally disabled children from Pasco, Leon and Broward counties had an idea they thought would help their kids: create new subdivisions that would serve as safe havens for special needs people to live, eat, dine and play.

But an existing law prevents special-needs homes from being established within 1,000 feet of each other, so the parents began lobbying lawmakers to rescind it. The parents hope to clear the way for a cluster of communities catering to those with autism, Down syndrome, cerebral palsy and other disabilities.


A bill to rescind the 1,000-foot law has passed in the Senate and is awaiting a vote in the House. And it is triggering discussion of a larger question that advocates for the disabled have struggled with for decades: How best to integrate those with special needs into society? Some warn that creating separate communities only ends up segregating those who are different.

``In our society, we call places like this institutions,'' said Kingsley Ross, who represents Sunrise community, a nonprofit organization catering to the developmentally disabled and the elderly. ``People with developmental disabilities have to be in contact with good models of behavior. If you surround them with people that don't have normal types of behavior, what we are going to see is more people with bad behavior.''

Others argue that the communities would give those with special needs a chance to be with people and families like them. Living among those who don't understand their situation sometimes leads to the disabled to being ostracized, harassed or assaulted, said Bill Sammons, president of the nonprofit group, Noah's Ark, in Central Florida.

Sammons, the father of a 24-year-old with autism, has seen the difficulties of his boy, Drew, as he tries to stay safe.

``He can name, maybe, every road in Florida,'' Sammons said. ``But then he won't look both ways crossing the street.''

About four years ago, Noah's Ark won approval from the city of Lakeland to build a 56-acre community that would be home to 200 special-needs residents and 40 family members.

``He would have more freedom in the gated community,'' Sammons said.

The subdivision, dubbed Noah's Landing, would have a communal dining room for socializing and pedestrian walkways between houses, so residents could cross the street without fear. It would be a mix of single-family homes, apartment units and group homes.


The group homes were the flashpoint. Afraid that homes catering to addicts and the developmentally delayed would drive down property values, the state Legislature ruled that the homes could not be within 1,000 feet of one another.

Rep. Kelli Stargel, R-Lakeland, introduced the new legislation which would allow local governments to make exceptions for group homes to be within 1,000 feet of each other. The lawmaker had learned there were other communities planned from Duval to Broward counties that would cater to the developmentally disabled and might have group homes in them.

``This is trying to establish a neighborhood, if you will, that would be conducive to people who are developmentally disabled, similar to a 55-plus community,'' Stargel said.

Robert Samuels can be reached at rsamuels@MiamiHerald.com.

Read more: http://www.miamiherald.com/2010/04/27/1599506/families-seek-approval-of-special.html#ixzz0oEUZj7EN


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.

Tuesday, May 11, 2010

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

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.

Sunday, May 9, 2010

What's A Mom & Her Boy To Do?

A Personal Story
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.

Saturday, May 1, 2010

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.