Contemporary Perspectives on Autism (December 2010)

27 11 2011

Laura Marshall
December 7, 2010
B. Delamater, JRL 308Z

ALBANY — Nov. 13 began like any other Saturday Joey Chaparro, 22, spends with his cousin Jonathan Estrada, 25. The twosome often visits local malls and libraries on weekends, sometimes taking in a matinee or going to a concert.

This particular day at Rotterdam Mall was interrupted by a group of teenagers taunting Jonathan, something that does not sit well with Chaparro.

“I just went up to them and asked if they had a problem,” he said. “I got in one of their faces and then they stopped laughing. They said ‘No… Sorry… There’s no problem.’”

The boys were right to adjust their attitudes, Chaparro- a recreational boxer who stands about five feet ten inches and 220 pounds- would be a sizeable opponent for one of today’s emo mallrats.

Jonathan, called John or Johnny by his family, has Asperger’s Syndrome, a high functioning form of autism. Someone with Asperger’s is very much able to love, learn, and live in the “mainstream” of society. They struggle with social interactions. An inability to perceive certain cues makes conversation difficult or awkward.

Asperger’s Syndrome is named for pediatrician Hans Asperger, who discovered and documented the condition while working at the University of Vienna in the early 1940s.

Working simultaneously at Johns Hopkins was Dr. Leo Kanner, a child/adolescent psychiatrist who is credited with coining the term “autism.”

These men are responsible for the foundation of research that fuels contemporary detection and treatment of the language delays and introversion observed in autistic patients.

The Autism Spectrum is not the finite scale it sounds. The term is used to summarize the expanding collection of traits and symptoms observed in individuals with autism. The more characteristics a child displays the lower they “fall” on the spectrum.

Presently it is estimated that one in 110 children in the United States have an Autism Spectrum Disorder, an increase of 440 percent in the last decade.

Quite often, the many facets of disability are generalized, something that is seemingly harmless but does little to help public understanding.

Mental retardation, as it was identified 30 years ago, is very much separate from autism or Down syndrome, which is a chromosomal condition.

The most distinguishable differences between someone with autism and intellectual impairment (formerly mental retardation) are language skills and IQ.

People who suffer from an ASD can have an average or above average IQ, but struggle to process verbal and auditory communications. A system of early intervention seeks to retrain these organic tendencies so that the person can functionally communicate- be it with picture symbols, sign language, or an automated speaking aid.

Someone who is intellectually impaired has the faculties to reach typical developmental milestones, but often fail to do so in the same time frame as their peers because cognitive impairment.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

 
“Jeff doesn’t necessarily look like he has a disability and most people aren’t really aware until they try to speak to him,” Brittany Bordas, 21, explains. “Over the summer when we were moving… [My roommate] Brandon went to shake his hand and introduce himself, not knowing there was anything different about him.”

Jeff is her uncle, Jeffrey Michael Rutbell. He is 40 years old, works a minimum wage job, and still lives at home.

In childhood, Jeffrey was diagnosed as having mental retardation. Recently, doctors, who monitor him for seizure activity, suggested that he has characteristics of autism.

While the two are separate conditions, they can and do overlap.

There has been no evidence of a genetic anomaly directly responsible for symptoms of autism, but a few related disorders have distinct physical manifestations, Fragile X and Angelman’s syndrome among them.

Even so, Jeff’s sister Karen Pugielli said that at one time or another “People would stare… We’ve been given strange looks as if we were aliens.”

Puglielli said that “It is my belief that- even though my dad was a wonderful provider and loves (his son) very much- he is somewhat embarrassed by public situations with Jeff. I can remember Jeff getting loud… when we were out and Dad would quickly hush him.”

Joe Chaparro understands. His cousin Johnny “talks to himself aloud in pubic which can turn a few heads.”

Their close-knit Puerto Rican family is very encouraging of John, who spends a good deal of his time at home, sketching comic strips and playing the piano, two self-taught, well- honed skills.

“I was about six or seven when I realized the differences between John and me… but since everyone in my family had accepted him, I had also. It was just normal.” Chaparro remembers.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Online journalist Gretchen Lee Bourquin wrote in a September column for Suite101 titled “Autism in the Spotlight: The Media’s Role in What We See,” that it is unreliable to consider fictional accounts of autism “true pictures” of the condition.

Sean Kittle, an office assistant at UAlbany’s Disability Resource Center, says that although he had seen movies like Disney’s “Tru Confessions” and Lifetime’s “Miracle Run” his comprehension of the “differently abled” was low.

“[This job] certainly has made me a lot more patient and understanding of what having a disability can do to someone, physically or socially. It has made me grateful for the body and mind that I have,” he said.

As student of media and documentary studies, Kittle absorbs Hollywood products with greater critical awareness than most.

“I think [filmmakers] try to be conscious in some cases when the goal… is to somehow educate or inform the public about struggles faced when people, especially adolescents are ‘differently abled.’”

He pointed out that often the best way to depict someone with a disability is to cast someone with the same- or similar- condition. Kittle cites characters on popular television shows “Secret Life of the American Teenager” and “Law & Order SVU” as having had the greatest impact on him as a viewer.

Kittle makes a good point. Viewers can better appreciate the presented scenario when the acting is less obvious. Films that are “based on a true story” or “inspired by true events” are usually successful because of the implied relatability.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

His name was William ¾ Bill for short.

In 1981, thanks to a TV movie starring Mickey Rooney, most of America learned the triumphant story of Bill Sackter.

He put a friendly, bearded, harmonica-playing face on a confusing and sometimes frightening condition.

Labeled as having “subnormal” intelligence and posing a “burden on society” at age seven, Bill spent 44 years in the Fairfield State School for the Feeble-Minded and Epileptic in Minnesota.

It was decided, decades later, that Sackter was in fact of almost normal learning capacity- although he was never taught to read, write, or even use a telephone. During the wave of “deinstitutionalization” in the 1950s and 60s, Bill was released from the institution and took odd jobs around Minnesota to support himself.

One of those jobs was as a dishwasher at the Minikahda Country Club. It was 1972 and Bill befriended a young couple- Barry and Beverly Morrow- at the employee Christmas Party.

Bill and Barry would be lifelong friends.

The TV special, titled ‘Bill,’ was better received than CBS executives ever could have hoped- Bill took the night and the hearts of America.

The documentary that inspired the Emmy-winning movie was finally completed in 2008, by Lane Wyrick. One of the interviewees in “A Friend Indeed” says “Bill was really a big leader in a movement, unbeknownst to him, of normalizing people’s reaction to people with disabilities.”

Arguably, ‘Bill’ ushered in the wave of blockbusters in the late 1980s and early 90s that centered on “challenged” characters.

Award winning films like “Rain Man,” “Forrest Gump,” and “What’s Eating Gilbert Grape?” helped to draw back the curtain of shame and trepidation associated with children and adults with special needs that existed just a generation ago.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

 
Three years ago, New York Times entertainment columnist Caryn James declared “Autism has become to disorders what Africa is to social issues, the celebrity cause du jour.”

James points out that as the number of diagnoses increase so do the number of projects- films, TV shows, literature, charity events- depicting or promoting individuals with developmental disabilities.

Dozens of celebrities have taken the fight to raise awareness off-screen and off the field. Actress Holly Robinson-Peete, former NFL quarterbacks Doug Flutie and Dan Marino, and action-star Sylvester Stallone all have a son with an Autism Spectrum Disorder- as boys are four to five times more likely to have an ASD than girls.

Perhaps the most famous parent within the autism community is Jenny McCarthy- who has eclipsed her former fun, sexy girl-next-door image with one of a fiercely focused Mama. The former MTV host and B-list actress has chronicled her struggle with the diagnosis, treatment, and so-called recovery she has been through with her son Evan, now 8, in three best-selling books.

Every family copes with their situation differently because no two children or cases of autism are alike. There are countless approaches, outcomes, and consequences. As far from the days of forced institutionalization as the field has come, it is still very much a ‘trial and error’ process.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

 
The future of autism research and treatment is as gray as its history.

New York State Assemblyman Marc Molinaro hopes that a new piece of legislation will brighten the obscure tunnel.

Currently, Molinaro is backing bill number A-10372 sponsored by Rochester Democrat Joseph Morelle. The “Autism bill,” as it can be called, aims to “provide full coverage for the prevention, early detection, diagnosis and treatment of autism spectrum disorders.”

“Marc is one of those people who will help you no matter your problem, or the difficulty that he faces in trying to do so,” says Amanda Simmons warmly.

Simmons, 22, lives in Tivoli where Molinaro got his political start over a decade ago.

 
Molinaro, 35, is an endearing figure, regularly attending community functions ¾ tree lightings, parades, spaghetti dinners ¾ from Hudson to Fishkill. His constituents often will call him by his first name, because he is a trusted friend and neighbor.

Molinaro married registered nurse Christy Cocker in 1999. The couple welcomed daughter Abigail in 2004 and son Jack Henry in 2009.

Two years ago, Abigail began having seizures and was diagnosed with a neurological disorder.
“A loss of oxygen at birth caused minor damage to her brain,” Molinaro explains. “Her motor skills are slower, speech jumbled, attention span limited and she lives on the Autism Spectrum.”

The Molinaro’s have been candid in sharing their ordeal, bravely bringing attention to the pressures the families of special needs children face.

Lisa Pullaro, 49, is a former town councilwoman in Red Hook and friend of the Molinaro’s. Having spent time with Marc and Christy personally and professionally, Pullaro feels that “as a New York State Assemblyman, Marc gives a very public voice to those families dealing with similar situations and struggling to find and provide services, learning opportunities and successes to their children.”

Molinaro addressed the legislature last June, speaking thoughtfully, rationally, and with the same sense of urgency he dedicates to the dozen other causes on his desk.

“It would be easy to suggest that because of our actions premiums may increase. Sure they will- so too will they increase when we fight cancer and we fight AIDS and when we fight… Alzheimer’s. And so too should they be effected by caring for these kids as they grow older, and the reason that I rise today is not for personal benefit, although I will tell you any glimpse or glimmer of hope would be tremendous for us.”

Should the bill be signed into law by the Governor, it would provide a lifetime of coverage to those affected by autism. Necessary as the Centers for Disease Control reports the lifetime care costs for someone with an Autism Spectrum Disorder is around $3.2 million.

Molinaro is perpetually positive, but also necessarily realistic. He has said “My daughter will grow older and I hope she finds her way out of that place that autism brings her… but if she doesn’t I want to be sure that there is going to be coverage for her when my wife and I can’t provide it.”

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

What to do next is a daily question, frustration, obstacle for families with a disabled member.

Some are blinded by the label, unable to accept it- they forge ahead groping for normalcy. Some are impeded by the desire to know ‘why?’ They focus on the past, consumed with finding fault. Some grapple with the guilt of ‘doing everything right’ and it still not being enough.

Placing blame on vaccinations, diets, pollution, or prenatal exposure to artificial sweetener will not change your circumstances. Karen Pugielli ¾ who is Jeffrey’s legal “stand in” guardian ¾ believes facing the future would be easier if we were all able to find the joy and hope her brother has.

“Most of these individuals are genuine  they do not know hatred or competition in the world… They accept their situation and others for what they are.”





One-of-a-Kind Experience with FutureMe

3 05 2011

For those of us about to graduate college, things have changed in an innumerable amount of ways.

It is incredible how moments of “I’m how old?” are already creeping in. You’re still someone’s child, but you’re no longer a kid. You have seen several presidents, nations and gas prices rise or falter.

Do you remember when your curfew was the street lights coming on? When a ‘chaser’ was the last kid to join the herd following the ice cream truck down the block? When you actually memorized your friend’s phone numbers? When homework was a worksheet of multiplication facts and maybe some spelling words?

Long past are the days of rushing home to sign on to AOL Instant Messenger (AIM), updating your LiveJournal and checking friend requests on Myspace.

Now, you can do this anywhere, from your iPhone or smartphones ¾ just the brand of the moment having changed to Blackberry messenger (BBM), Tumblr and Facebook.  With all the advancements made in our short lives, have you ever wondered about sending yourself a message? Yourself weeks, months or even years from now, that is?
Well one such service exists, so you better think long and hard about what you want to remind your future self to remember.

The website, FutureMe, has grown exponentially since it was founded in 2003. Programmer friends Matt Sly, 33, and Jay Patrikios, 35, devised the website so that users could send advice, encouragement or just silly questions to their future selves via email.

There is a structure in place, however, because the FutureMe team didn’t want to become some sort of personal scheduler or novelty. “We didn’t want to become a reminder service,” Sly told the LA Times in 2007. “‘Dear Future Me: Pick up your laundry.’”
There is a minimum hold time of one month for all letters, the maximum delivery date being 50 years from when it is written.

Sly, a graduate of Yale’s School of Management, is responsible for the software used by FutureMe that allows for a timed delay in delivering the emails.

Patrikios, who received a BFA from the Pratt Institute, picked the website’s name and designed the user interface.

The duo have received attention for FutureMe from NPR, Oprah and The Today Show.  Their website has hosted nearly 1.5 million emails since it was launched almost a decade ago.

[ [ LISTEN TO NPR WEEKEND EDITION SATURDAY INTERVIEW WITH MATT AND JAY ] ]

FutureMe, which costs nothing to join or use, is really more of a hobby for Patrikios and Sly. They have day jobs on opposite coasts; Patrikios lives in Seattle, WA and works for Amazon, while Sly is based in the Boston area where he works for Microsoft.

Frank Ahrens, a technology commentator for the Washington Post, said in 2006 that “The early advocates of the Web predicted it would create a global community. They said it would cause an unslakable thirst for knowledge about others.” But, as it turns out, “it’s just about me, me, me.”

His article about FutureMe, published as part of the “Web Watch” series, equates the concept to that of a digital time capsule, but takes aim at Sly and Patrikios for enabling the narcissism and gossip fishing that goes on in today’s social networking.

“We like the part where people make their letters public. It’s no longer sufficient, apparently, to have an inner dialogue,” Ahrens says. “The messages come in a number of languages, and range from genuine witticisms to treacly self-affirmations to heartbreaking confessions. My favorites contemplate the space-time continuum.”

Not everyone must feel the way Ahrens does, as the FutureMe team was honored with the opportunity to turn the more poignant and curious public postings into a book. In 2007 F&W Media released Dear Future Me: Hopes, Fears, Secrets, Resolutions. Later, the publication received an average of 4 stars from Amazon users who purchased the 256 page text.

The FutureMe website is simple to use and simple to read. Links around the page are clearly marked and the letters viewable to the public are organized into seven categories.

The entries range from hilarious to heartbreaking, encouraging to commemorative.

One letter that stands out on the “Our Favorites” section reads; Dear FutureYou, It’s John. Hi… You’re gay, at least you are now. Have you changed? I hope you have. (Written April 20, 2006 – delivered April 20, 2007.)

A striking note that was “Recently Delivered” says “Stop what you’re doing! Are you proud of yourself? If not, why are you doing it?”

A message that is particularly pertinent to the students mentioned at the beginning of this article, was written in 2005 and delivered in 2008. The author, who is not named, is checking in with himself after having completed his doctoral degree which appears to have been “a (quarter million dollar and 14+ year) waste of time.” This person begs of himself, “All in all, I would rather have been enjoying my life instead of living in dread and insecurity all those years. I am writing this to you, future me, so that you can review the situation. The simple things are what bring me the most enjoyment. Look around. What surrounds you now? What have you chosen?”

_____________________________________________________

A think-tank of pending UAlbany grads came together via Facebook forum to discuss their past dreams, current goals and future aspirations.

1. What was your major? Is the career you’re working toward similar or different from what you wanted to “be” when we were kids?

2. Are you going to grad school or do you have a job lined up? Or are you totally winging it?!

3. Five years ago, we were 16 or 17. Five years from now, we’ll be 36 or 27. What advice would you give your past ad/or future self?

4. Is there anything on your ‘bucket list’ that you want to do before you’re 30?

5. What are a few things you absolutely want to accomplish in life?

Auckland-to-Albany transplant Suzy Clephane, 22, recalls a desire to own a pet shop when she was a child. She will graduate next weekend with a liberal arts degree ¾ her focus in journalism and communications. Clephane, a talented athlete, says she wants to play [field] hockey until she is 50 and eventually hike the Abel Tasman ¾ a 225km national reserve on the coast of New Zealand’s South Island. She intends to pursue a graduate degree in the next year, as well as sky dive and write a book eventually. Clephane notes that she would remind herself, in any age or state, to “just go with the flow!”

Melvin Philip, 21, grew up in Yonkers and intended to go into computer engineering. Now, he is fully devoted to evolutionary psychology studies and has a summer-long assistantship at the Wagner Lab. Philip hopes to attend SUNY New Paltz for grad school, have a PhD by the time he is 30 and nationally publish a study sometime in his career. Philip says he would remind his past and future selves to “keep improving myself” and “stay passionate.”

Amy June Skeldon, 22, has known her whole life that medicine was her calling. Shifting gears after her junior year, Skeldon changed her career trajectory from trauma surgeon to physician’s assistant ¾ and will be taking a year off to complete C.N.A. certification before applying to a P.A. program.

She wants to travel to the United Kingdom and maintain a youthful sense of adventure by going white water rafting sometime soon. Looking back, Skeldon wants to keep hold of a few things; “Do what you want to do,” “Never let a man or anyone control or consume your life,” and “Be wary of who you get close to and become friends with, there will be many people who come and go through your life.”

Francesca Aliberti, 21, also from Yokners, entered SUNY Albany four years ago hoping to complete her degree in human biology and become an orthopedist ¾ specializing in the diagnosis and treatment of scoliosis. Changing tracks slightly, Aliberti will attend the New York Chiropractic School in Seneca Falls next fall.

In addition to traveling (Europe, South America, India and Oceania are just a few of her ideal destinations), Aliberti wants to “have a successful career, build a beautiful family and give back as much as I can to people.” She wants to congratulate her former self, “’cuz [sic] everything is working out,” and tell her future self “not to worry” too much.

Meaghan Lamica, 21, will be returning to her small hometown upstate after next weekend’s commencement ceremony. “I’m totally winging it!” she says. “I would like to take grad classes eventually, but not right away.”

Lamica wants to be married by the time she is 30, and frequently reminds herself that “You can never get this time back so it is important to enjoy every moment.”

_____________________________________________________

Related sites:
FutureMe
PostSecret
Found Magazine
Tumblr





Local Legend Looks Ahead

16 04 2011

Sex jokes, rough housing, cartoon voices and sister teasing — all before 10 am.

Alex Lamica, 18, stands in the kitchen of his family’s home in Chateaugay hours after his aggravated 16-year-old girlfriend called to very loudly discuss her dissatisfaction with the kissing scenes in this weekend’s school play, Disney’s Beauty and the Beast, in which Alex stars.

“I hung up on her, so I’ve got her wrapped around my finger. I can do anything now,” he says.

Nothing like a little sarcastic chauvinism with your morning cereal.

Speaking of cereal, Alex strikes up a game of keep-away with his sister Meaghan, 21, who desperately flails to reach the coveted box of Lucky Charms dangling above them. The two pace between refrigerator and sink, pantry and oven, hurling the most ridiculously harsh insults — “I hope you have beautiful children and their legs fall off!” “Nobody likes you anyway, you’re adopted!”

Having a sense of humor and a determination to make the best of things has benefited the Lamica family as of late — Alex’s milestones in finishing grade school were overcasted by father Tony’s nine-month deployment to Afghanistan.

“I had to be the man in the house,” he confesses. “I had to be what my dad was to this family because he wasn’t here.”

Family photo, 12/2010

“Once the initial shock wore off we accepted it, even though it was really hard,” Meaghan says. “For me, being [away] at school, my daily life wasn’t as effected as Alex and (little sister) Morgan’s.” She notes that every one did their best to communicate by phone and internet regularly, which made “it a little bit easier for us to handle.”

Alex says that his many, many after school activities — including National Honor Society, chorus, band and basketball — served as welcome distractions from the absence at home. “I’ve always been a kid that loves to do everything,” he explained. “In a way it did make the time pass quicker, but it would have been nicer to have him here to experience that stuff with me.”

___________________________________________________

 An amy of maroon t-shirts emblazoned with “Beast It Up Big Al” perched intently in the stands of the Glens Falls Civic Center last month. The slogan the family touted throughout the 2010-2011 season was a nod to both Alex’s semester personas — that of an athlete giving his all every Friday night and the lead role in Chateaugay Central School‘s spring musical, Beauty and the Beast.

(Photo: Aaron Eisenhauer, Glens Falls Post Star)

‘Big Al,’ who stands 6’1″, is the tallest player on the Chateaugay Bulldogs basketball team and perfect casting for the role of the hulking-but-lovable Disney creature.

Stepping out onto the court was surreal for Alex, who had been there two years before with a different roster. His only intention was to “play my heart out for the town that had supported me all season.”

The team was knocked out, 59-55, by eventual state champs the New York Mills Marauders in the first round. “At first I felt horrible,” he says. “Now looking back, we were one of the top four teams in the state. I really couldn’t b e prouder of the team I was a part of. They are some of the greatest guys I have ever met.”

That change in attitude is exactly the kind coach Ron Boyea would expect from his men. Alex says the most important thing he learned from Boyea over the last three years is “whenever somebody gives you something that’s not in your favor, you don’t put your head down and accept it. You change it.”

That desire to continually be better is something Alex employed when the drama director approached him, desperate after the Mayor of Whoville cast in Seussical the Musical quit. “They said ‘I’ll give you a Snickers bar if you join the musical.’ I really love Snickers,” he remembers with a laugh.

Maternal cousin Courtney LaPage, 16, recounts “He played modified, JV and varsity basketball,” and the family were “all so proud” when he chose to do something different.

“I had always been kind of curious about the drama thing but never had the courage to see what it was all about,” Alex admits. “I never wanted to be the one to sing the solos in chorus, I didn’t think I could sing.”
Now, with key roles in three productions behind him, he plans to minor in music at SUNY Potsdam, wehre he will major in elementary education this fall.

Mom Joelle Lamica says it would be a dream come true for Alex, if he could return to Franklin County and teach at CCS. He has always embraced the small town, but says “Yes, I’ve been very, very bored on a Saturday. Unbelievably bored. But I’ve never resented it. I try to find something to do, even just a pick-up game in the gym. That’s an advantage of having the coach live down the street — he can unlock the school for you!”

__________________________________________________

The Lamica’s home — a tan, single level with attached garage on Belle Avenue — has a neat row of shrubs and rusty basketball hoop in front. Inside is decorated with country touches — a collection of teapots, framed family photos, and antique piano.

When considering all the buzz Alex generates in the town of about 500 families, on stage or on the court, mom Joelle’s eyes widen and she says, “What’s it called, ‘small fish syndrome?’ He’s already talking about it, saying ‘I think I’m going to have a hard time.'”

Lamica with costar Morgan Simonsen and dancer Florence Danjou

“I’ve always strived to be the best at everything I try,” Alex says later. He is grappling with the realization that “I’m not going to be the guy in college that does everything best.” But he reassures himself that college will be “a good opportunity to make new friends. Really good.”

All of his 2011 classmates will be staying within a two hour radius, says mom Joelle.
Alex is hopeful this will allow him to maintain relationships with the friend’s he’s grown up with. “I know there’s going to be different circles — people going to Potsdam and making new friends there, going to Clarkson and making new friends there– but being so close you can bring people home” and create a gaggle of  new buddies.

New friends, and possibly new girlfriends, if his year-long relationship with sophomore Desiree Stumpf comes to an end. “It’s hard to let go of someone who once made you so happy,” he laments. “Part of me is hoping that’s still there.”

Another part of him wonders whether there is someone out there who would better compliment his activity level and his interests. “She’s not as heavily involved as I am,” and he wonders whether her tendency to pick a fight comes as an effort to “knock me down a peg.”

Whatever happens next, Alex will no doubt continue to set a wonderful example for his younger male cousins; Taylor LaPage, 14, Adam Gero, 12, and Jake Bombard, 7.
“I would be honored if they considered me a role model in their lives,” he says timidly. “Not to sound cocky or arrogant, but I cast a big shadow with the musicals and basketball and all the stuff I do. I just hope they do what they love like I have.”





Dismay for Certain Students as Graduation Approaches

23 03 2011

The University at Albany will see roughly 3200 students from 25 departments walk across the Entry Plaza Lawn come May 15, families and friends cheering.

Two students who will have no one to watch them march are Adam Brown and Hal Halper, both 22.

An estimated one in ten people will lose a parent by the time they are 25. By UAlbany enrollment figures, that’s a potential 1,300 of our peers suffering such a tragedy.

Brown, right, with his brother Mike and their Mom several years ago

Brown’s mother Lynn, 59, died suddenly last August– less than three weeks before Brown was to leave for a year abroad in Japan.

At 11:16 on a Saturday morning his brother called. “I remember his exact words,” Brown recalls.  “‘Adam, I cannot believe I have to do this over the phone. I am so sorry I cannot be with you to tell you in person and cry together. Mom’s gone. Tara found her this morning in bed and she’s gone.’”

Debra Umberson, a professor of Sociology at the University of Texas-Austin, has studied the dynamics of family loss extensively. Her 2006 article, “Parents, Adult Children, and Immortality,” published in Contexts Magazine, states “the death of a parent is the most common form of bereavement in adulthood,” and that several survey takers felt the moment they lost their parent was the first time they “achieved true adult status.”

Hal with his mom in 2009

Halper has experienced this loss twice.

While a senior in high school back in Brooklyn, Halper’s father suffered a massive heart attack overnight. He was 79.
Roused by his distraught mother at 6am, Halper checked to see if his dad was breathing at all. “We both knew that he passed in his sleep,” he remembers. “It was horrifying, but we grew closer than ever from that and we had the best five years… really appreciating each other after the loss of my father.”

This fall, just one month after being diagnosed with an advanced form of Leukemia, and just two days before Thanksgiving, Halper’s mother Janet, 75, died.

It is particularly difficult to reconcile the fact that so many college students are not as independent from their families as they believe themselves to be. Twentysomethings like Brown and Miller are still finding their way as adults. Most would be shocked by the adversity Brown and Miller are now grappling with.

Brown was the primary caregiver to his mother, who was disabled, for 14 years. He was also named executor of her will. There was money left for him, but not nearly enough to cover everything. Brown, who previously worked part-time as a pharmacy technician, took a second job as a surgical associate at St. Peter’s Hospital in order to pay off the some $20,000 of expenses. “I temporarily withdrew from school to deal with my mother’s estate and the bills that needed to be paid,” he explains.

Brown admits that his academic ambitions were hampered by the passing of his mom. “I have trouble finding the drive to keep going in school because I know that I won’t have her here to make proud.”

He completed his coursework in Human Biology last year, but is only partway through his degree in Japanese language studies. Brown expects that graduation, whenever it may be in the future, “will make me feel as though I lost her all over again. She was so excited to see me walk, to see me be the only one of her children to graduate from college. Now I won’t have that.”

Halper, on the other hand, has thrown himself into various commitments at the University. Seven classes, three theater productions (including the upcoming Cabaret), and honor society serve as distraction from his still fresh wounds.

“My mother always said, ‘Life is ten percent of what happens and ninety percent of how you react to it,’” he says emphatically. “I am trying to chose to have more good [days] than bad.”

Halper is dejected thinking of the milestones his parents are going to miss. Most of all, he says, “I wanted my parents to be there to baby-sit… To tell my children stories of our family history, which I always loved to listen to myself.”

It is often said that death brings people together– but Brown and Halper have experienced the opposite.

Brown, the youngest of five, has also dealt with changes to his relationships with his siblings Mike, Matt, Shannon and Taralyn, since the loss of their mother. Communication broke down amongst the five of them, but Brown and his brother Mike have made the effort to speak daily, “because we feel as though we are all we have left in terms of family.”

Halper is currently at odds with his (much) older siblings, Arnel and Laura, who are trying to undermine their late mother’s wishes and close Hal out of any inheritance. “I will not be attending family holidays. I don’t want anything to do with them,” he decided. “I have my chosen family who care for me a trillion times more than my own blood.”

Holding on to the memory of their late mothers has gotten them through the most emotional time in their short lives, but both Brown and Halper acknowledge that this kind of loss is not one that will fade.

“It is [a] lasting pain I deal with all the time,” Brown says. “She was the reason I woke up in the morning. And when I lost her, I felt as though I had nothing to keep going for.”

“I have had a great life and am forever grateful for the privileges, but I would give up money, appearance, success and whatever else for my mother back.” Halper confesses. “I think that grief can last a lifetime, but I hope it doesn’t.”