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A Project with a Mission

By Brian McTavish

A participant in the Mission Project, Lauren Stern -- who has Asperger Syndrome -- is holding down a job and living independently.

A participant in the Mission Project, Lauren Stern -- who has Asperger Syndrome -- is holding down a job and living independently.


The young woman plants her hands on her hips and peers affectionately at the dozen small dogs barking and frolicking around her.

“Annie! Annie-ba-nannie!” she calls to a black miniature poodle hanging out with Bubby, a black-and-silver Silky Terrier.

“Who loves Bubby? Is that your boyfriend, Annie?” she says, before the feisty yip of another of her furry charges demands notice.

“I know mommy and daddy,” she assures the attention grabber, a black-and-white Chihuahua named Noura that she scoops up and snuggles in her arms. “They’ll be here later this afternoon.”

Noura quickly calms down, as if the little dog understands that her owners will soon return to take her home. The woman smiles with satisfaction.

Several days a week, Lauren Stern is devoted to the play, exercise and socialization of her animal pals at Doggie Day Camp at the PetSmart store in Merriam, Kan.

“I care about them,” says Lauren, who has Asperger’s Syndrome.

Coaxing, cuddling – and, yes, cleaning up after – a roomful of needy canines may not be everyone’s idea of a dream gig. But for Stern and others focused on her future, it is part of something much more important: an increasingly independent life.

It wasn’t that long ago that Lauren and her parents wondered if this day would ever come. If she would ever hold down a regular job…or have a place of her own…or discover an identity apart from Mom and Dad.

But the 26-year-old is experiencing success while dealing with a neurobiological disorder that – no matter how high-functioning on the autism spectrum – can make it difficult to socialize and adapt to change.

Lauren’s progress is connected to the parent-run Mission Project, which enables young adults with developmental or cognitive disabilities to lead richer and more self-directed lives with relatively minimal support.

Parents with a vision

The Mission Project has 15 participants with disabilities such as Asperger’s, Down Syndrome, epilepsy and cerebral palsy.

Each individual has an apartment at a Mission, Kan., complex. The area was chosen for its safety, mixed-use development and convenient walking distance to essential services, stores, restaurants, entertainment spots and the Sylvester Powell Jr. Community Center, where participants have memberships to access fitness programs and other recreational activities.

The Mission Project promotes independent living by providing specialists in job training, placement and ongoing job counseling as well as social skills training and support. It also utilizes continuing education classes for developmentally disabled students at Johnson County Community College. And assorted cultural and leisure opportunities are encouraged so participants can develop relationships with their peers.

The idea for the Mission Project was born in 2003 when three couples with grown children with Asperger’s and Down syndrome began discussing shared concerns and goals. The group included Lauren’s parents -– psychologist Avner Stern and writer Robin Silverman -– who wanted to help their daughter become as self-reliant as possible.

“We wanted to give her a life,” Avner says. “What are we doing for these kids if they’re just staying home with their parents and watching TV? They can’t drive. They don’t socialize. They don’t date. They’ll attend Special Olympics once a month, and that’s it.”

“We wanted her to have a future,” Robin says. “And to find a way that we would not always be worried about what happens to her when we’re gone.”

In 2004 the parents formed the not-for-profit Mission Project, which today has about 30 participating parents or other family members.

Members of the Mission Project hold regular meetings where they work together to solve problems. About 15 participants with disabilities such as Asperger's Syndrome and Down's Syndrome live in the apartment complex as part of the project.

Members of the Mission Project hold regular meetings where they work together to solve problems. About 15 participants with disabilities such as Asperger's Syndrome and Down's Syndrome live in the apartment complex as part of the project.

Family members are financially responsible for their individual participant’s everyday living expenses, including rent, food and clothing. Three yearly fundraising events (along with grant money and public donations) pay for Mission Project programs, as well as the project’s greatest annual expense: $52,000 for two vans and drivers that mostly transport participants to and from their places of employment.

But family members are the ones who volunteer their time to meet about 60 percent of participants’ overall transportation needs, including planned outings -– from a Kansas City T-Bones baseball game or a concert at Starlight Theatre to a daytrip to Omaha’s Henry Doorly Zoo.

“We all spend hours upon hours,” Avner says. “We have a 24-hour help line that we take turns answering, if a participant needs to call.”

Perhaps no one has answered the call quite like the Mission Project parents and other family members, Robin says.

“Very few people think differently,” she says. “You know, there’s the model where you put your kid in a group home. And we didn’t want to do that. And we didn’t want to rely on government. So we created a new model. And that takes, I think, a parent commitment. As far as we know, there is nothing else like it out there.”

Lauren’s world


Before Lauren moved out of her parents’ Overland Park home, she was almost never alone.

“Saturday night, maybe,” Robin says. “But we never left town without her. She’d go on vacations with us.”

So the thought of leaving her parents to take part in the Mission Project didn’t come easy to Lauren.

“It was hard, because I didn’t know if I would see them again,” Lauren says. “I didn’t know if I could come up with scheduled time to be with them.”

She still phones Mom and Dad every day, and “sometimes I’ll go over and spend the night,” she says. “But I realize that I can’t do that every night.”

As much as they understood the potential benefit of Lauren leaving the nest, it wasn’t exactly a snap for her parents, either. In fact, initial apprehension is the norm for parents involved in the Mission Project.

“When we first started, we were all kind of terrified because these were our babies,” Robin says. “And we had been very protective of them because they all have disabilities. And unless you’re a parent of a kid with a disability, it’s hard to understand how protective you become. Because they have no friends and you’re fighting battles constantly.

“And some parents dropped out early on, because they just could not let go. They could not see their kids being independent. Those of us who let go saw an amazing growth.

“It’s like, if you build it they will come,” Robin says. “If you let them, they will develop independently much beyond anything we used to imagine they could do.”

Lauren agrees. “It’s probably better by myself,” she says. “I like it, being independent.”

When her parents used to go grocery shopping with Lauren, “she didn’t know how to push a cart,” Avner says. “And she couldn’t pick out anything.”

“She just had no clue,” Robin says.

“Now she makes her list,” Avner says.

“Now it’s, ‘What do I need and how do I use it?’ ” Robin says.

And that’s just the tip of their daughter’s improved autonomy.

“She does her laundry by herself,” Robin says. “I mean, she’s learned how to do it.”

“She’s learning how to cook,” Avner says. “She likes chicken, doesn’t she?”

“She also has two cats,” Robin says, “whereas, at first, we weren’t sure if she could take care of herself.”

Lauren has also gotten better at socializing with others in the Mission Project, although she’s still not one to take the initiative.

“She’s not as good as some of the others at inviting people to do things,” Robin says. “She’ll wait until others invite her. And they do a lot, so she doesn’t really have to pursue it that much. Others have developed the ability to knock on the door and say, ‘Let’s go to dinner. Let’s go to Taco Bell.’ ”

Participants of the Mission Project return from a group trip to San Antonio.

Participants of the Mission Project return from a group trip to San Antonio.

Whether Lauren and other Mission Project participants are eating out, taking an acting class at the Barn Players Community Theatre or tackling a dancing lesson at Ballroom Unlimited, their different strengths and weaknesses bring out everyone’s best.

“If you just had a bunch of kids with Asperger’s, they wouldn’t talk to each other,” Avner says. “Or they would all be very socially inappropriate.”

“But the Down Syndrome kids tend to be more outgoing,” Robin says. “And they help with the social skills of the people with autism and Asperger’s. They sort of mesh and help each other through.”

One of Lauren’s favorite activities is getting together with some of her friends to watch wrestling on TV. They wear fan T-shirts. They root. They holler.

“The wrestling is fake, but the injuries are real,” Lauren says. “I guess it kind of gives me an adrenaline rush.”

In some ways, Lauren appears to be a perfectly normal young woman. But in other ways that may never change, she is not, her parents say.

“She does have limitations,” Robin says. “We try very hard to acknowledge that she’s an adult and let her act like an adult. But she can’t be as adult as she’d like.”

“She can erupt,” Avner says. “She can be loud and brusque. She has a heart of gold, but she can’t modulate her voice. So we constantly try to help her with that.”

“And she doesn’t really get the concept of money,” Robin says.

“She can’t make change.” Avner says. “When she goes to the grocery store, she takes out X amount of dollars every week. So she does fine with that. But if she goes to a soccer game, she’ll think nothing of buying a T-shirt whether she has the money or not.

“The one thing about young adults with Asperger’s is it’s very deceptive,” he says. “Because they can be very bright and you say, ‘My God, they can do anything.’ But they usually screw up in work. Their work failure is very high.”

Table talk

Lauren is enjoying a day off from her job at PetSmart and relaxing in her Mission Project apartment.

Lauren’s mother has come for a visit, and her Mission Project job coach will soon be over to discuss her latest three-month evaluation from her PetSmart supervisor.

For now, though, she’s simply chatting with her mother and another visitor at the dining room table. The conversation covers a range of topics.

On driving:

“I’m interested, but my mind wanders, so I’ll never drive,” Lauren says.

“Don’t say ‘never,’ ” Robin says.

“Well, it’s impossible,” Lauren says.

“She has a driver’s license,” Robin tells the visitor. “She went to the rehab institute and took driving lessons with them and they evaluated her. Their concern was her impulsivity. She’s pretty good at driving, but it would take only one instant of distractibility. They recommended that at this time she not drive.”

On dating:

“I actually know a guy who lives downstairs,” Lauren says. “His name is Cory. He paints for a living. And I talk to him. I just talk to him about his job or whatever. Sometimes I don’t talk to him that much, because usually I’m in my apartment when he gets home from work. But he’s too old for me. He probably doesn’t want a relationship right now.

“I guess if I wanted to go out with somebody, I wouldn’t know how to,” she says. “I’ve asked my Mom to help me go on these dating Web sites, but I don’t know. At some point, I hope to be with somebody.”

On housekeeping:

“On occasion,” Lauren says, “there will be people here to tell me, ‘vacuum your rug’ or ‘clean your bathroom.’ ”

And what does she tell them?

“Later!” Lauren says. This makes her laugh.

“I’ve got to clean my table,” she says. “And as soon as I clean my table, my cats get right back on there. And I’m like, ‘I just cleaned that – oi!’ ”

Participants in the Mission Project receive instruction on healthy eating, taught by Judy Frey (second from right), an aunt of one of the members.

Participants in the Mission Project receive instruction on healthy eating, taught by Judy Frey (second from right), an aunt of one of the members.

Getting the job done

There’s a knock at the door. It’s Lauren’s job coach, Joe Scarlett, an older man whose gentle voice belies his sturdy sense of purpose.

After some small talk, Joe pulls up a chair and gets down to business. He holds a copy of Lauren’s job evaluation from her supervisor.

“A little more critical than the previous two,” Joe says. “But he’s made accommodations in terms of the hours. And four days a week, we’ll hold on to that.”

Joe gets Lauren’s signature on the evaluation and promises to email her parents a copy.

“Let me emphasize some things here,” he says calmly. “You’ve had some pluses on this, too, but then some minuses in terms of the inconsistency — and that’s the handling of animals, the pet escapes and the work habits.”

Joe points to a particular shortcoming noted on the evaluation. Lauren’s eyes follow along.

“This one was explained to me once as the longer you’re in the day care room, you kind of get more spacey,” he says. “And I said, ‘Well, you’re a space cadet, anyway, so… .’ ”

“Well, I didn’t get spacey yesterday,” Lauren says. Her voice is suddenly louder and shakier.

“Well that was yesterday,” Joe says quietly.

“Honey, don’t be defensive,” Robin says. “Nobody’s trying to criticize you here. We’re trying to help you do a better job.”

Joe looks at Lauren and asks: “Do you want to arm wrestle or what?”

“No,” Lauren says in a smaller voice.

“OK,” Joe says.

“You’re fine,” Lauren says.

“Alright, thank you,” Joe says. “So are you, fine.”

Joe picks up where he left off.

“So what did we talk about in terms of work habits and past performances?” he says. “What can we do now? Do we just let it ride?”

“No,” Lauren says.

“OK,” he says. “So what do we do?”

“I’ll work on it,” she says.

“Yeah,” he says, “but who do you work on it with?”

“Mark,” she says.

“That’s right,” Joe says. “You go to the guy who wrote the evaluation. And you say, ‘I want to get better. How do you think I can do better?’ ”

“Understand?” Robin says to Lauren. “Ask him what you need to do.”

Lauren nods.

“The one thing I was pleased with was you’re still doing good at maintaining the animal records,” Joe says. “That was good, because that sometimes can be difficult to do those. And, of course, you love to give out the treats. There’s no doubt about that one.”

Joe leans in and smiles.

“Why don’t you give me some ice cream?” he says.

“It’s doggie ice cream,” Lauren says.

Joe reads from the evaluation: “ ‘Great with treats… attentive and caring…needs to help control dogs…knows how to clean play rooms, but tries to get out of it.’

“Now why would you try to get out of cleaning?” he says.

“I don’t!” Lauren counters.

“She tries to get out of cleaning here,” Robin says.

“Why?” Joe says. “Because you’re like everyone else, that’s why. I’ve never seen anyone that rated cleaning on their list of priorities.”

“Yes, exactly!” Lauren says with vindication.

“Are you unique in that characteristic?” Joe says.

“No,” Lauren says. “I’m not the only who tries to get out of stuff.”

Joe gets Lauren’s permission to email her evaluation to Children’s Mercy Hospital, which already has her resume. He’d like to get her on there, as he has several other Mission Project participants. The hospital has a hiring freeze on now, he says, but he’s recommended her. And, if she did get a job there, it would be for more hours.

“There’s no reason we wouldn’t continue this process until its conclusion, OK?” Joe says. “Because then you would have a choice to stay where you are or to move on. All right, any questions?”

“No,” Lauren says.

“Would you lend me 20 bucks?” he says.

They both laugh.

Mission for the future

In five or 10 years, Lauren’s parents anticipate far less day-to-day involvement from themselves or other parents and family members currently enlisted in the Mission Project.

“We’re old,” Robin says. “So we’re trying to get the word to people with kids in their teens, so that we can bring in a younger crop of parents to take over some of the responsibilities from us.”

The Mission Project is also trying to build an endowment, she says, and set up a structure with an executive director “so the momentum keeps going after we no longer can do it.”

But so far, so great for Lauren and the other participants in the Mission Project, her parents say.

“I think she’s pretty happy,” Avner says. “And these folks are by and large living a normal life. Not a perfect life, but it’s a normal life.”

“And who has a perfect life?” Robin says.

Lauren recommends the Mission Project to other young people with developmental disabilities. On one condition: They must be willing to challenge themselves in reaching their personal potential.

“Anybody who’s looking to have independence,” she says, “anybody who’s looking to try and do stuff on their own – I mean, if they’re ready, why not?”

NOTE: For more information about the Mission Project, go to www.themissionproject.org

2 Responses to “A Project with a Mission”

  1. It is amazing how Lauren has matured and find her place in life. I so admire the dedication, resourcefulness and persistence demonstrated by these extraordinary adults-the parents and their children. If we all could learn how to partner together to solve problems rather than make it someone else’s responsibility think what we could do in this country. At a time where many are shouting health care is a privilege these people are more interested in finding ways that work to make a difference in the quality of life. How inspiring!

  2. admin says:

    Carla, thanks for your comment! I too am pleased that Lauren has matured and realized a level of independence through the efforts of this program. However, I’m not sure this is evidence that our health-care system doesn’t need major reform. Right now, many people see the health-care discussion as an opportunity to improve insurance coverage for people with autism. While the Mission Project stands as a great example, I believe it is such because there is a need that isn’t being filled. I’m sure the 15 participants are fortunate that they are part of the program, but consider how many more people there are whose families do not have resources or the organization (think single parents working two jobs, for instance) to provide an opportunity like this for their grown children.

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The Summer Break: A Catch-22?

By Jeanne Holverstott, M.S.

Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?  

Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.

It’s time to search for activities to fill the day that do not involve electronics. You’ll want to set new rules on Wii, DS, Xbox, PS3, computer and television usage. It’s also important to find meaningful opportunities for interaction.
 
Children with ASDs approach summer with mixed emotions. Many parents probably share this ambivalence. Just like the school year, summer vacation is permeated with ups and downs. So, what do we do with all of that time? Take the following into consideration:
 
·         In seeking consistency and routine, we hope to reduce the unknown and the gray that causes anxiety and opens Pandora’s box. We hope to create a microcosm of predictability in a world of dynamic instability.  Change in the ASD world can be bad. Yet, how helpful and how realistic is our static world? Perhaps the static world we strive for unwittingly weakens the coping skills, frustration tolerance, adaptability and resiliency that undergirds functioning in a dynamic world. Summer could be viewed as a litmus test for how our children with ASD react to change that comes yearly.
·         That being said, I’m not encouraging schedules to be thrown out the door. No, only those game systems. Again, I kid. Make money in this recession and sell them at Game Stop. Schedules are helpful, but overbooking your kids with camps, lessons, and trips might also not be the solution.
·         To help promote a healthy schedule that allows for family time and for time working on those interaction skills, consider picking one or two activities in which you can involve yourself as a parent in some capacity. If your child joins a social skills group, exchange numbers with the other family members and have the kids over on the weekend. If you join a “team,” consider recording the interactions (which many other parents do!) so that you can review your child’s interactions with him or her and compare them to other teammates. If you hear the ice cream truck, make it a teachable moment: Walk with your child to buy that bombpop and shape what develops. In the end, paying for a camp, a class, a lesson is not always necessary. Taking the time to set up meaningful interactions (such as play dates) can provide the same benefit.
·         As for those electronics I suggested you sell, they are a necessary evil as a stress reliever, entertainment and an escape. You can put constraints on game play – the length of time and the time of day – but don’t necessarily follow my father’s adage: The sun is out, you should be too. Video games might prove a nice break midday when the heat is at its worst or after an exciting morning.
 
There is a quote you might appreciate at this time: “The longer the summer vacation, the harder the fall.”

Jeanne Holverstott is an autism spectrum specialist who practices at the Responsive Centers in Overland Park. To ask Jeanne a question about autism, send e-mail to editor@spectrumconnection.net, and put “Question” in the subject line.

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DEVELOPING TALENTS

Intervene, Intervene, Intervene

By Kate Duffy

A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.

That’s why the short answer to Toni’s question is this: do what you need to do.
And don’t do it alone.
Team up with the people in your life to introduce your teen to the world of work. When you get burned out – and you will – you’ll have reinforcements to soldier on to do the hard work of teaching your kid that he has to work and that not everyone is as fascinated with Pokemon, fighter planes, railroad time schedules as he is. You want your teen to join the outside world in a safe, organized manner, so bring in those folks you think would be good role models and champions for your teen.

How involved should you and your team become with your kid’s job search? There is no one right answer, but remember that our kids are generally younger than their chronological age, so that a 16 year old on the spectrum is more like an 11 or 12 year old emotionally.

The end goal is for your teen to get some work experience and to be out in the world, so he understands more about the way the world operates. Given that, it’s not as important how your teen gets a job, just that he has one.

For many, the first job is sacking groceries. So you definitely want to know your neighborhood grocery store manager. You’ll want to talk to the manager before your teen does, letting him or her know about your teen’s strengths and problems. In addition, you’ll want to let the manager know something about autism, especially how prevalent it is, how it affects families throughout the community. By hiring your teen, tell the manager, the store is helping the autism community, which is loyal to supportive businesses.

Do you need to let your teen know about all your behind-the-scene maneuvering? No, you don’t, and it’s better if you don’t. Each kid is different, and so you have to tailor the approach to the kid. For instance, both of my sons are on the spectrum, but they are very different from each other temperamentally. With my oldest son, Nick, who has a lot of anxiety, I frequently have had to go around his back to get him to try new things. That’s how he started playing chess, which he loves, and is a skill he has made money from for a number of years.

Playing chess on a team and then being the team’s assistant coach for three years was a great experience for Nick. Not only was his chess coach a wonderful mentor for him, he also taught Nick how to be a leader and supervisor. For three years, til he got a paying job as an assistant chess coach, Nick worked with Mr. Cooper and learned the important workplace skills of showing up on time, conversing politely even when you don’t feel like it, and managing others – in this case, kindergartners to 8th graders, not a particularly easy workforce.

When he was 14, he also worked for my friend Necia, building her small business a data base of clients and contacts. Three afternoons a week that summer, he walked to her home-based business a half mile away and got to work. What he didn’t know, though, was that I had asked Necia to let him work for her because I knew she would be a good mentor for him, that he would learn about the world in a safe, organized way with her.

Don’t feel badly about intervening in your teen’s vocational life. There is a lot of competition for jobs right now, and our kids need to be part of a team – even if they don’t think they do. Sign them up for Vocational Rehabilitation services too because the VR counselors will then be a part of your team, which gives you a bit of a breather. Remember, the type of skills it takes to get a job do not come naturally to our teens. That’s why the unemployment and underemployment rate for people on the spectrum is about 92 percent.

So get your team together and remember you are not alone. There are lots of us out there doing behind the scenes coaching with our kids. Just keep the end goal in mind and plug away.

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