There's No Normal, There's Just Me

MORE ALIKE THAN DIFFERENT

 

"Does my autism make it any harder to date me?"

 

Jacqueline Armstrong's question comes without transition or preamble, with no warning the conversation might be changing course to a sensitive subject.

 

"I don't think so," answers her coworker and boyfriend, Danny Lawrence.

 

Jackie has Asperger's - a high-functioning form of autism.  She gets daily help from an assisted living staff and knows she probably couldn't get by without it.  But as she points out, "Having Asperger's Syndrome is a part of me. It does not define me."

 

It also doesn't dominate her life.  Like many other 27-year-olds, she balances work and school, she has her own place, she has friends.

 

"We're not as different as other people think," Jackie says. 

 

 

WORKING AT  PRIDE: FINDING HER NICHE

 

A typical weekday finds Jackie working on an assembly line at the Roseville, Calif. headquarters of PRIDE Industries, a non-profit organization that employs people with disabilities.  She works here part-time when she's taking community colleges classes; full-time when school is out.

 

Today, she's helping assemble a medical device for athletes called a Game Ready. It's a prescription cold pack.  "It looks kind of like a lunchbox, only it's got electronic things in it," Jackie says.  "They put it on their joints and it pumps cold water through and it goes like a cuff on their joints and then it heals quicker than a cold pack apparently."

 

Jackie is working Step 3 of 5 on the assembly line.  She fastens small, thin plastic tubes to the electronic daughterboard - like a computer's motherboard only smaller, hence the name.  She attaches pumps to the unit with zip ties.  And she scans each part's barcode into her computer so defective units can be traced back to where they were assembled.

 

"Working here, I found my niche because I know I do it well here.  Whereas somewhere else - like, if I was at Taco Bell pushing a broom, it would be too stimulating, number one, and customers would be always coming in and trying to say stuff," Jackie says.  "It's like I wake up and I look forward to coming here.  It's my niche."

 

"You know, not anybody can come here and work on this line," says Jackie's supervisor at PRIDE, Maria Duran.  "You really have to understand what you're doing and why you're doing it, and her quality is superb.  I mean, she hardly makes any errors.

 

"My line is run with 50 percent with disabilities and 50 percent with no disabilities.  They are an essential part of the work cell," Maria adds.  "She's working and moving everything at the speed of everybody else."

 

"When you talk to her, you wouldn't know that she has a disability at all," says Art Deleo, Jackie's case manager at PRIDE.

 

In fact, Jackie earns a salary of nearly $7, well above what many of PRIDE's employees with disabilities make. (Because of PRIDE's unique status as manufacturer and non-profit organization, it can pay as little as the federal special minimum wage of $1 an hour.)  Jackie had to work her way up - "When I first started, all I did was cut tubing," she says - but as Maria is quick to add, Jackie "caught on really quick - very, very quick.  And at the beginning she was kind of shy and (didn't) really (talk) to everybody, but she's so good at making friends and getting along with everybody that pretty soon she was part of our team."

 

One of the friends she made at PRIDE turned into something more.

 

 

DANNY THE "MOG"

 

"Hi, my name is Barf."

 

The quiet guy came over to "introduce" himself a week or two after Jackie started at PRIDE in fall 2009.  She had noticed him right away.  "He would be off in the corner during break doing pushups off a bench," Jackie recalls.  "His feet would be up on a bench and his hands, he would just be doing one-handed pushups and then alternate."

 

"I'm a mog," he went on, quoting the character played by John Candy in the Mel Brooks Star Wars spoof Spaceballs.  "Half man, half dog.  I'm my own best friend."

 

"That's how he introduced himself to me," Jackie says, "and so I didn't know what his name was.  I thought his name was Barf." His real name is Daniel Lawrence.

 

They became friends.  And they remained friends until last spring while Jackie struggled through some tough relationships. "I have been in situations where I have been taken advantage of before and not realized it until after the fact."  They hung out with the same people, and even worked on the same product at PRIDE - though they didn't realize it at first, because they worked in different departments.  Occasionally during the friendship period, Danny hinted that he'd be interested in being more than a friend.

 

jackie_date

"He said something like, 'If you ever consider me, let me know,'" Jackie says.  "I said, 'I'll get back to you.'  And so two months later, I got back to him.  I said 'So, would you want to go on a date?'  We've pretty much been together ever since."

 

"He's smart, he's funny and he gets me," she adds.  "And he's understanding about certain things that I may do that are a little bit out of the ordinary, like my quirks and things."

 

 

QUIRKS, REMINDERS AND ROUTINES


You wouldn't know it from a glance around her one-bedroom Roseville apartment, but by her own admission, Jackie's quirks are a central part of her life.

 

But there is a hint if you look closely: the chart full of magnets with symbols and pictures.  "It's a board that says my schedule," Jackie explains.  It's modeled after a type of chart known as a PECS (Picture Exchange Communication System) that's used by people with autism, most of whom can't communicate or function as well as Jackie does.

 

There's a column for daily tasks - like taking her medications and making her lunch.  On Wednesdays, for example, her chores include cleaning the bathroom and vacuuming.  She gets help from her staff with some tasks - "I once almost caught the house on fire by using the vacuum," she says, and besides, it scares her.  But most chores, like scrubbing her bathtub, she does herself.

 

Jackie balances her physical and social limitations, which require help from her staff, with her desire to be self-reliant.  "I have a car but I don't drive it.  My staff drives it."  She takes several medications every day, but must be reminded.  Similarly, "There was one time where I went in the shower and my socks were still on and I didn't realize it until I was done showering."  Her staff helps her avoid that.  Jackie cooks her own dinners - "I make a mean spaghetti," she likes to say - though her staff chops meats and vegetables for her.

 

Yet for all that's different about her life, Jackie's home looks quite normal, with photos of friends and families on the walls and shelves.  Posters include Green Day, baby Stewie from the TV show Family Guy and Audrey Hepburn.  "I associated Audrey Hepburn with being independent," she explains.

 

By her bed, she keeps a list of thoughts for self-affirmation: "You are valued.  You should be valued."  "I am smart, funny and a hard worker."  "Just to remind myself on a bad day," she explains.

 

And Jackie has had more than her fair share of bad days - even if she wasn't always aware of them at the time.

 

 

CONFLICTING DIAGNOSIS

 

"One of the first things I noticed," says Jackie's mother Helen, "is that she didn't move a lot."

 

At first, it was a relief for Helen and Mike Armstrong, as Jackie was the youngest of four.  "She would sit in the playroom in a sitting position as a toddler, about six months old," says Helen, "and just sit there and play and not really move around much."

 

But there were other worrisome signs.

 

"The second thing I noticed," says Helen, "is that she really never threw temper tantrums or got mad.  And I said, 'She's going to be so vulnerable and easily taken advantage of because she never gets angry.  She's just so agreeable with everything.'  And that was frightening.  I mean, I was thinking even at that young age, she'll need a protector in life."

 

Mike Armstrong remembers seeing that "her two older brothers and older sister, two boys first and a girl, didn't pound on her the way they did each other.  And I found that different and odd. It's as if they put a protective bubble like you would see some almost - a mother-protecting-her-cubs kind of thing."

 

There were concerns about Jackie's speech as she approached kindergarten.  "We saw the pediatrician and they sent us for a speech evaluation," Helen recalls.  "And they said that she needed to go to speech school every day.  She was the youngest of four and we just said, 'Oh, she's fine, we're not going to worry about it.  She'll figure it out.'"

 

But the school district wouldn't enroll her into the kindergarten class her parents wanted, pointing to test results that appeared to mean Jackie needed special education.  "The kindergarten teacher said she's like a mute child coming in.  She really doesn't talk," remembers Helen.  "Of course I'm kind of blind to a lot of this.  She just seemed like one of the kids, you know?  Tearing up the house.  I really wasn't worried about her, other than my thinking she needs a protector in life."  In the end, Helen got Jackie into a regular class, with extra instructional help.

 

Jackie faced physical challenges too. She was hospitalized for what Helen calls a "metabolic crisis."  That led, indirectly, to Jackie's first autism diagnosis.  It was far from definitive.  And, Helen says, "by the time she finished two years in kindergarten and first grade or whatever the years were, she was reading beautifully and her language really came about."

 

 

AN INVISIBLE DISABILITY

 

Helen says it took several more years before the doctors had a correct diagnosis for Jackie.

 

"She went from autistic-like to PDD (pervasive developmental disorder)," says Helen, "and then the latest neurologist, when you were about 14? 12?  He said Asperger's.  He felt that we need to give this a label for the purposes of having some identification.  Rather than giving someone a thesis, give it a label.  So she grew into Asperger's having come from a less accomplished diagnosis earlier in life."

 

Jackie still questions some of her doctors' assumptions.  "They think that my brain was rewired very similar to someone with autism when I was young because of how sick I got" from her metabolic disorder.  "So there is some medical things that happened to my brain.  But, I kind of think that I might've still had some autism even without that metabolic thing."

 

As she grew, Mike was constantly thinking about his daughter's safety. "We already knew she was nice to a fault, but I worried what would happen to our daughter if and when she's out on her own. Will she be safe and will people - normal people - feel that they could take advantage of her?"

 

jackie_coworkers

She took everything literally.  "You know," says Mike, "'Should I be punished for something I didn't do?'  'Oh, of course not Jacqueline.'  'Oh, that's good, because I didn't clean up my room the way I'm supposed to.   Gotcha, Dad.'"

"I was kind of aloof," says Jackie.  "I was not the typical person, that's for sure.  But having as many siblings as I did, I didn't feel that much outcast.

 

"I didn't realize that I was different from other people until I was much, much, much older - like high school, maybe.  And even then, I didn't realize that I maybe think differently than other people do."

 

"We had her tested high, low, sideways," says Helen.  "You can't pigeonhole it other than she really is not quite - she has significant challenges that are invisible; truly an invisible disability to a large extent."

 

 

FINDING A COMFORT ZONE

 

"Hey, do you want to come sit with us?" the senior girl asked the shy, socially awkward 16-year-old sophomore at a high school pep rally.

 

That's the first time Jackie met Crystal Glenn.

 

Crystal's sister was friends with Jackie, in the same special ed program.  She saw Jackie sitting alone.  "And I was like, okay, that's not cool for her to be over there by herself."  So Crystal invited Jackie to sit in the senior section.  Jackie was thrilled.  "This super cool senior wanted me to sit with her!"

 

Thus began a friendship that continues.  Crystal says Jackie has matured over the last decade.

 

"She was very shy in the beginning - and timid," says Crystal.  "I barely saw her talk for a while and I knew she did talk but she wouldn't really talk to me that much and would rarely look at me. And she would talk in a very robotic voice."

 

"I thought she was like scared of me at first or I was intimidating or something, because I was learning as well," Crystal says.  "I didn't really know much about autism or Asperger's or anything like that.  So I just thought she doesn't like me or something or I'm freaking her out."

 

But as their friendship grew, Crystal would come stay with Jackie to give Jackie's parents a break.

 

"Eventually we got to a comfort zone because I was at her house throughout the time and she stopped doing all those things."

 

And when Jackie got her own apartment five years ago, Crystal applied to Jackie's assisted living provider to be her personal attendant.  She's now Jackie's case manager.

 

But to move out, Jackie had to overcome her parents' doubts.

 

 

A PLACE OF HER OWN

 

"Wait a minute," Jackie thought to herself one day several years ago.  "My sister and brothers have all gone away to college and I'm still here.  But I'm in college too."  So why was she still living at home?

 

She was attending the local community college.  Jackie decided she needed to move out.

 

"I would buy 'for rent' books," she recalls, "like they have at the grocery store in the little rack.  I would just grab one like every couple months and then circle what apartments and kind of drop a hint."

 

At first, Jackie's parents thought the urge to move would pass.  "But it didn't fade," Jackie says.  "It kept going.  It kept going.  The talk of, 'I want to be on my own, I want to be on my own' - it didn't drop.  So we pursued it."

 

Her parents had mixed feelings.

 

"I was thrilled," Helen says, admitting that in addition to being excited for her daughter, she was a little burned out from taking care of Jackie for so many years.  "It just was a dream come true for me for her."  No nerves?  "No."

 

"All me," says Mike.  "All me.  I hated it.  Couldn't stand it.  Didn't think she was ready."

 

"I said, this is happening," says Helen.

 

"I just thought it was premature," says Mike.

 

"We tried to stack everything up so it would be a very safe situation," says Helen.  And they pushed to get Jackie qualified for supported living services - the in-home care she continues to need.  She began with 24-hour care, but now, she needs much less.

 

Jackie herself was ready to go.  But adjusting wasn't easy.

 

"I don't think I've ever told anyone this.  My first month on my own, I was really worried that I was going to fail, that I was going to somehow get in trouble with everyone or that somehow things weren't going to work out.  But then I flourished.  I did really well."

 

And now?  "I wouldn't trade my independence for the world."

 

But she loves and respects her parents, whose support she says has been "monumental."  "They raised me just like they raised all my other siblings, to be the best that I can be and not to dwell too much on the things that maybe I struggle with and just focus on bettering myself."

 

"They never said no, you can't.  They said let's see if we can do this.  Let's see if you can do this.  So I never grew up with that thinking of no, I can't, even though there were some things I probably couldn't do.  I wasn't limited by what doctors told my parents to expect of me."

 

 

ANYTHING BUT LIMITED

 

A look at Jackie's schedule now shows a life that's anything but limited.

 

She works.  She goes to college, working toward an arts and culture degree.  She participates in Special Olympics.  She's a member of the board of the non-profit Alta Regional Center.  She goes out on dates with Danny and hangs out with her friends.

 

Tonight, she's having some friends over to watch the TV show Heroes.  Danny is there too.

 

There's a knock on the door. "Come in! Door's open.  Don't be a murderer!"

 

After years of social struggle, Jackie is at ease now in her home, chatting with friends, comfortable with her surroundings.

 

"It's just been really amazing to see how she has become more confident in her friendships," says Julia Hargrave, another of Jackie's supported living staff members.  In the past, it was hard for Jackie to speak up when she was upset about something - and to communicate effectively when she did.  Now, Julia says, "The way that she's handled a lot of her friendships and her relationships has really improved as far as like voicing her concerns or communicating."

 

jackie_tv

That's not to say Jackie's Asperger's disorder doesn't occasionally bring social complications.  One time, she says, she told a guy he looked like the actor Kevin James from the sitcom The King of Queens.  She meant it as a compliment, but "come to find out, he thought I meant you're fat.  And two weeks later, he walks up and says, 'That was really insulting, what you said,' and I was so embarrassed."

 

She says the acquaintance didn't know she has Asperger's, and she doesn't make a point of telling people.  "Like, 'Hey, how's it going?  I have Asperger's.'  It's like walking around with a sign.  So I kind of kept my distance from that.  But I had no idea, until like days later, that it was even insulting - whereas if it was, in the situation I could've been like, 'Oh, sorry about that!'"

 

 

MOVING UP ... OR MOVING ON

 

Like others her age Jackie's not sure what's next.  She wants to get her degree and keep working.  But she's not sure where.  She might move up at PRIDE or become an advocate for people with disabilities.

 

 "I hope to someday move up in PRIDE," she says one evening, "and be more…" She pauses.

 

"Invested into the company?" prods her staff member Julia.

 

"Yeah, something like that."

 

Advocacy seems to spark her interest.  "That would be a really cool career," she says, noting that she has a platform thanks to Alta Regional Center.  "That's ultimately one of my major career goals is to be an advocate and I've kind of already reached that goal by being on the board because I'm speaking for people that receive services."

 

"I think she has the capability," says Art Deleo, Jackie's case manager at PRIDE, who says he's watched her speak to a crowd of hundreds of people at the Sacramento Convention Center about being disabled - and ace it.  "I think it's the challenge of her being labeled of having a disability and just having the right opportunities to get out there and be more.

 

"I think she can do something bigger and better if given the opportunity of some kind."

 

 

A FULL, RICH LIFE

 

 "Mom, would you be too upset if I didn't get married?"

 

The question had been weighing on Jackie's mind for a while.  "I used to be obsessed with the idea of marriage.  Marriage to me meant normal.  Then I realized there is no normal - there's just me."

 

"No, Jackie," Helen answered.  "Whatever works."

 

"Good," Jackie said.  "Then it's all planned."  And the weight lifted.

 

"I'm too independent for marriage," Jackie later explains.  "But it doesn't mean that my relationships are any less rich with the people that I love being around."

 

And it doesn't mean she doesn't have high hopes for Danny.

 

"The sky's the limit for Danny and I - but the nice thing is, we know each other's speed."  The next step, she says, might be to live in the same apartment complex.  "Just being able to see each other whenever we wanted and then we'd have our own space when we need it."

 

So even though she has Asperger's, Jackie's personal goals - other than marriage - sound quite normal.  "I want to read as much as I can, learn as much as I can, and be happy in my endeavors and have stimulating relationships," she says.  "And someday, own a condo."

 

In short: "I want to continue living a full, rich life."

 


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