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Stephanie's House

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Our family welcomes you to Stephanie's House 

On our way to becoming an official 501c3! Our thanks to David Brennan and Rachel Bashore from Brennan and Associates, Reading, PA.

Second Annual "Autism Shops" event will be held on Saturday, November 20, 2010 in the Grande Ballroom of the Freedoms Foundation ... Valley Forge, PA! We have more donors this year than ever and all items in the ballroom will be featured at HALF OFF retail pricing! Also amazing prices on designer handbags, jewelry ... new this year - "Treasure Room" featuring gently loved items that all need a new home!!

Come on out and enjoy delicious food, fabulous shopping and the love of our volunteers!

Some of our donors to date - Honora Pearls, The Slanket, Bare Escentuals, Mally Cosmetics, Kirks Folly Jewelry, Rachael Ray, Temp-Tations, Coach, Kate Spade, Valerie Parr Hill, Westinghouse Lighting, Homedics, Sharper Image, TO Epps, Inc., Blender Bottles, Silpin, Panasonic ...





April is Autism Awareness Month ... get aware ... understand and accept.

It's a new year and planning is underway for our spring fundraiser - possibly a gourmet dinner dance and wine tasting. Stay tuned!





When autistic behavior is misunderstood

Sunday, March 28, 2010 - Autism Unexpected by Jean Winegardner

Parents of children with autism often have a difficult time going out in public. It can be hard to manage a special needs child's wants, needs, and reactions in an unpredictable environment. It can be hard to teach your child about social skills while you are in the thick of trying to control their unconventional behavior. But one of the hardest things to deal with is the looks and the comments that other people give your autistic child when they are just being themselves.

This behavior often keeps parents of autistic children from going out in public. For many of us, it is easier to just keep our kids home than to have to endure other people judging them based on their disability. It is kinder to keep our kids home so they don't have to see and hear the way uninformed and unkind people look at them and talk about them.

A recent post by blogger Smockity Frocks has sent the autism blogosphere into a tailspin. Many of us see the looks, mumbled comments, and unpleasant attitudes from strangers around our children, but wonder if maybe we're being hypersensitive. Maybe these strangers aren't really judging our children. As is evident in Smockity's post, "In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye" (which she has since taken down, but is available through Google cache), we are not being hypersensitive.

The post is a blow by blow account of her children's encounter with a young girl in a library. Her description of the child's behavior is so clearly that of an autistic four-year-old and a caregiver who was trying to positively reinforce turn-taking skills. Instead, Smockity saw a badly behaved little girl flapping her arms and saying repeatedly, "I'm being patient," and was anything but. Knowing children with autism, I believe that girl was really trying hard.

The post itself is very hurtful and the comments are worse. People responded with praise for this blogger for not making a scene. They praised her for her restraint. They laughed at her wit in making fun of a young girl. They suggested that the caregiver should have apologized to Smockity. Once parents of autistic children started to chime in, the blogger responded defensively, closed comments, and then subsequently took down the post.

It was painful for me to read this post. Just the other day, I was at a museum. My kids were not completely thrilled with the exhibit and were a little bit boisterous, but nothing out of line. Jack, my autistic child, was wiggly and enthusiastic. He squeaked a little, he jumped up and down a little, and he did a little twirling. He tried to get close to the exhibits. Trust me, I was on that kid like glue to make sure he was behaving correctly. But my definition of "correctly" and yours might be different.

There was a trio of older people whose path we kept crossing. At one point I saw one of them make a face and mumble something under her breath. It sounded like, "out of control." I tried to assume the best, that maybe I had misunderstood and that she wasn't talking about my child, who was not being bad. He was being autistic.

I thought of this while reading Smockity's post. To hear her not just judge this child, but to make fun of her repeatedly (sample quote: "The flapping intensified until I thought we all might witness the first recorded occurrence of self propelled human flight.") makes it clear that I am not hypersensitive. There are people out there who think Jack is bad. Who think I am a bad parent. Who don't want him around. That's not okay with me.

I want to make something clear here. I do not believe that autism is an excuse to misbehave. I expect all three of my children to behave themselves. There are behaviors that I insist on and when they do something I do not approve of, I speak to them about it and I discipline them for it. Just as with any other child, there are behaviors that I allow and there are behaviors that I don't. I am trying very hard to raise children who can operate appropriately in society.

Just as you would not insist that a person with Parkinson's disease should not have tremors, you cannot ask a person with autism to behave in a manner that is not consistent with his or her neurological makeup. Not to mention that there are some behaviors that my children haven't mastered yet. We are working on them, and they are a work in progress. I refuse to apologize for my son, who acts in a developmentally appropriate manner, even if that manner is not what the public at large expects.

I emailed Smockity, and she was gracious enough to get back to me. She has received a lot of hate mail over her post. While I agree that her post was insensitive, I suggest that hurling insults in either direction is not the way to create autism awareness. Just as we want our children to be treated with respect, we should treat all people with respect, even those with whom we disagree.

She did not respond to a further question I had, which was this: I asked her if she were put in this same situation today, would she look at the child differently than the last time. I don't know if she will. I hope she does. I hope that she and her readers—and the world at large—grows to understand that our children, who may not have an easy disability to watch, are still good kids. I hope she and others can learn that our children deserve the same respect as any other person, and that just as we rightfully accommodate other disabled people with things such as ramps, we should accommodate our autistic members of society with understanding and a lack of judgment.

To do otherwise is unfair—not just to people in the autism community, but to all people. Our kids (and adults) have every right to live in the world with typical people. Not only that, but they have so much to offer the typical world. Keeping them isolated from society helps no one.

So I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don't know the whole story. Understand that there might be factors at play that you aren't aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better. If we all work together with understanding, compassion, and kindness, we can grow as a people.

If you are interested in reading more reactions to Smockity's post, please visit Squidalicious or Liz Ditz's sites where they are keeping lists of links to posts responding to the original piece.


We made the Chicago Tribune!!! Check this out!
http://www.chicagotribune.com/topic/wphl-bp-autism-shops,0,7939193.story

THANKS TO EVERYONE WHO SUPPORTED OUR EVENT!!! WE RAISED CLOSE TO $17,000! You can still help our cause - check out items we are posting on a daily basis and buy OR contribute through PAYPAL!!!

In the news - thanks to my new friend and wonderful mom to two autistic twin boys, Honey Rinicella! Link to a FOX news report. Governor Rendell vows more money for autism AND the growing needs for housing for adults!

http://www.myfoxphilly.com/dpp/health/111909_Pennsylvania_Autism_Census




Adults with autism are the next 'silent tsunami'

Each year, tens of thousands of children diagnosed with autism, from mild to severe, enter adulthood and leave the safe confines of schools and their services behind.

Every day, their parents, such as Jennifer Smith-Currier of Gardner, Kan., worry what will become of them.

"It's like, where is the journey going?" said Smith-Currier, whose children Corinne, 16, and Cameron, 14, have autism. "When you have a typical child, there are goals: You go to high school; you go to college; you have a career and 2.5 children. My daughter is 16 with the mental capacity of a 12-year-old. Will my son ever get married? I don't know the answer. Will my daughter ever drive a car? I don't know the answer. Will she ever find love?

"I won't be around forever. I want to know they're safe. I want to know there will be somebody to look after them, that they won't be forgotten and can lead productive lives."

Smith-Currier, who works with the Kansas chapter of the Autism Speaks advocacy group, joined about 65 other parents, counselors, developmental experts and many adults with autism recently to be part of a "National Town Hall"—meetings held simultaneously in 16 cities.

One goal was to allow participants to vote nationally on strategies to address what another parent, Kirsten Sneid of Leawood, Mo., called "the silent tsunami" of autistic youth entering adulthood.

At its core, autism is a disorder of brain development. It affects people's ability to communicate or emotionally connect to others.

Estimated some 30 years go to affect about 1 in 10,000 people, the Centers for Disease Control and Prevention now estimates that the disorder may affect as many as 1 in 100 to 1 in 150 people, or about 2 to 3 million people nationwide.

The disorder's cause and the reasons for its precipitous rise are not known. The scope of its effects is vast.

In some instances, people with autism are uncommunicative, lost in their own worlds and unable to care for their most basic needs. Others, such as individuals with Asperger's syndrome, are highly intelligent, talented or even savant.

One of the participants , Linda Jameson, was diagnosed with Asperger's in the 1990s after struggling her first 33 years with traits that only mystified and depressed her. Now teaching part-time at Johnson County Community College, she is pursuing a special-education degree with an autism emphasis.

"I stayed awake all last night worrying if I could get my ideas across to the others today," she said. But everyone was receptive at her table.

"What is known," said Swindler, "is that when you get to numbers like 1 in 150 or 1 in 100, you can be assured that every single person in the community has autism touching either them or their family or friends."

Ideally, life for adults with autism might be something like it is for Bobby Beeler, 25, of Leawood. Although many individuals with autism are able to hold jobs, their unemployment rate is probably 80 percent.

For the last six months, Beeler, who lives with his parents, has done maintenance, cleaned windows and restrooms and banisters and raked leaves at ScriptPro in the Kansas City suburb of Mission, Kan., a firm that produces machines to fill pharmacy prescriptions.

"I like it," Beeler said this week. "It's not easy."

Beeler's father, Scott Beeler, is an attorney for ScriptPro.

Mary Cole, the company's facilities manager, said that when she hired Bobby Beeler, she did so knowing that she would have to work with the family to figure out the best way to allow their son to do his job well.

She quickly found that it only required making a detailed list.

"If, for instance, I said, 'Go down to the bathroom and clean the sinks, mirrors and take out the trash,' he may only remember one thing," she said.

Now, his supervisor, Phil Knight, gives him a typed list each week.

"I don't check on him any different than anyone else," Knight said. "He's very detailed. He shows up to work every day."

Yet few companies are as accepting or patient with autistic individuals, Swindler said.

Thus the town hall meeting on setting priorities: employment, housing, safety and recreation:

Employment: "They don't interview well," Swindler said. "If they do get hired, often there is some social issue, a misunderstanding in communication, and some people don't know they can ask for help."

High-functioning individuals aren't eligible under Medicaid for waivers for access to vocational rehabilitation, sheltered workshops or job coaches, a situation advocates would like to change. Advocates also believe more people need training on how to manage and work with autistic individuals.

"It's about employers being willing to take a risk," said Gary Weinberg of Overland Park, whose son, Blake, soon to turn 24, has autism. Two days each week, he rolls up silverware at a restaurant.

"He is so proud of the fact that he earns money," Weinberg said. "That self-esteem is critical to feeling he is living an independent life and being productive and paying taxes and contributing to society."

Housing: Already overwhelmed with requests for group homes and other shelters, states aren't ready for the influx of autistic adults.

Safety: With more autistic adults, law enforcement needs better training regarding their behaviors. Officers in Lenexa already receive some training.

Health care is another safety issue. Autistic adults often are denied insurance coverage.

Recreation: "We know that people with autism feel isolated in their communities. We want people to be able to do all those things that everybody else does," Swindler said.

Programs for those with autism continue to grow across the region.

"We can't leave this population untapped," said Sneid of Leawood, Kan. Her son, Evan, 15, has the disorder.

"He is severely, autistic," she said. "He has limited verbal skills. He is not going to ever sit across the table from me and ask me how my day is. He is not going to prom. He is not going to drive .... In the beginning, you grieve the loss of a neuro-typical child."

But, she said, "We are resilient and we are resourceful. It's not about talking about the problem. It's about talking about the solutions."

———

(Kansas City Star reporter Rick Montgomery contributed to this report.)



  

My dear friends


I have often spoke of this feeling I have about our lives ~ that each of us is here, for whatever amount of time, for a reason. A mission. Perhaps to leave this earth a little better than it was when we arrived.


My mission has never been questioned. What began as a seed many, many years ago is now blooming and growing into an immense dream of a project that has to be given a formal start. And this is where the love story of “Stephanie’s House” will begin.

 

 

As all of you know, my daughter Stephanie, who is severely autistic, will be 21 in 4 years. It seems like an eternity, but we know how quickly time passes and if I blink and do not get moving, my daughter and many young women like her, will be without a place to spend their lives


In the state of Pennsylvania, there are tens of thousands of adults, like Stephanie, who are on waiting lists to be placed in appropriate residential care facilities where they are provided a life of joy, dignity, worth and friendship. It will not be enough to bring her home in 4 years. She needs care 24/7 and with it, socialization, life skills, friendship and healthy activities. As a mother, it will also be a blessing to know she is living in a place that is safe and loving, especially after I am gone.


With this in mind, I have made it my life mission to establish what I hope to be the first of many residential facilities for women with autism. We have called our first project “Stephanie’s House,” because we are emerging as a non-profit organization whose goal it is to raise over $300,000 to buy our first home where my daughter, and 4 other young women, will reside beginning in 2013. It is a HUGE undertaking and one that will require me to reach out to the kindnesses of everyone I know.

 


 


To raise the seed money needed to establish this non-profit, we are having our first annual “Autism Shops – a day for the girls” this fall in Valley Forge. Through the generous donations of mint and new items such as handbags, shoes, jewelry, dresses, bath products, cosmetics, upscale clothing, home goods – you name it – we hope to raise $10,000.



I am kindly asking everyone I know for assistance.  Truly, anything would be lovely, samples, sold outs ... at the risk of being forward I must ask that items be MINT. I see this as an upscale event and not a garage sale/flea market. I need for this sale to be well received so we can do it again on an annual basis. I have a long way to go and I cannot do it alone. Thank you kindly for anything you can contribute to this cause. Items can be sent to the address below or I can arrange for a pick up.


With love and hope,

mlk

One mom. One mission. One universe helping me do it.   


Marie Louise Kier