They’ve had quite a year.
For the Greenans of West Seneca – a family with five children, all of whom have been diagnosed with autism – the period since they were featured last summer in a Spotlight cover story in The Buffalo News has been one of challenges and changes.
Among other things, the Greenan kids – including 11-year-old Sam, the most severely affected with autism – are growing bigger.
That means new challenges, for parents accustomed to physically restraining the kids when behavioral episodes occur, often on a daily basis.
“You can tell he’s not a baby, not a little boy,” said Joe Greenan, 42, his tone rueful, watching his wiry, tow-headed son Sam run around the kitchen of the family’s suburban Cape Cod.
“As he gets closer to 18, I’m getting closer to 50,” Greenan joked.
For now, of course, that’s all in the future. Joe and Julie Greenan are still caring for their five children at home, with some outside help.
One recent late summer day, the family spent the afternoon at their house – it’s safer there, and easier for Joe and Julie and the aides to keep an eye on the kids’ behavior so it doesn’t get out of hand.
The family gathered in the kitchen, which is covered with pictures by 9-year-old Quinn – he still draws pirates, as he did last summer, but now he also does scenes that are abstract.
“He’s into impressionism,” said Joe.
Some things in the Greenan home are much the same. A paper plate on a table held cut-up grilled cheese, Cheetos, Oreos and banana chips. The Greenan kids, like others with autism, often eat differently. Salty, sweet, crunchy edibles still rule the day.
But there is change in the air at the Greenan home. And, though invisible, this potential change is a powerful – and painful – presence.
The Greenans are contemplating something no parent would ever wish to: Knowing that they may soon no longer be able to take care of one of their children, Samuel, at home.
Sam is no longer able to attend his special school. His parents said he injures others.
So, the Greenans face a hard decision. It is one that, if made, will change their family forever.
“We’re in this state of limbo,” said Julie Greenan, a St. Jude medal dangling from the chain around her neck. “We just don’t know what we’re doing.”
As recently as last summer, it seemed to the Greenans that such a day was still likely a long way off. Not anymore.
That, too, is part of the story of the Greenan family over the past year.
“When he’s mad, he’s like two people,” said Julie, a nurse, of her son. “It’s hard to come to that realization that you’re not safe with your child.”
“It’s not even my safety I’m concerned about, mostly. It’s his.”
A public face
The Greenans lead a different life in some ways than they did a year ago. For one thing, they dwell more in the public eye.
Since readers across Western New York – and all over the country – learned about the Southtowns family of seven in the pages of The Buffalo News last July, the Greenans have coped with new visibility. They have won praise for telling their story, and even received an award in their town. They have built relationships with other families raising special needs kids.
But they also have been the subject of public curiosity. At times they deal with the questions and comments of people they encounter who observe or hear about their family’s situation. They are used to explaining to people what autism is – and why their family is different.
The Greenans said the reason they are open about their family’s situation is because many families are raising children with autism and facing similar challenges, if perhaps not to the same extent as their family.
All five of the Greenan kids, their parents and other sources said, have been diagnosed by doctors with disorders on the autism spectrum. That includes Reilly, the youngest child and only girl, now 5; Sam, 11; Quinn, the middle sibling, 9; Jacob, 7; and Joe Jr., the oldest child, now 14.
The Greenans are a rarity, having five out of five: five cases of autism in five children. Yet across the country, autism is coming under increasing scrutiny as the numbers of children diagnosed with the disorder continue to grow.
About 1 in 88 children is affected with autism, according to the latest statistics from the federal Centers for Disease Control and Prevention. That’s a striking rise from 2000, when the number was 1 in 150.
Far more boys than girls – 1 in 54 males – have autism, the federal statistics show.
And families with an autistic child are more likely to have a subsequent child with autism, research shows.
The Greenans have said that they would have had a large family even if they had known ahead of time that their kids would have autism. Joe and Julie come from big clans: Joe’s family had seven siblings, Julie’s nine. The Greenan kids have 27 cousins on Joe’s side of the family alone, a family member said.
As it turned out, Sam was diagnosed first, when he was a toddler, and then his older brother at age 5, and then later the younger siblings, the couple said. By the time the younger children were diagnosed, they said, they already had a sizable brood.
Triumphs and trials
The past year has been an eventful one for the Greenans in ways both good and bad.
The family has celebrated some notable successes. Joe Jr., the least affected by the disorder, entered West Seneca East High School – the school where his parents met and began to date – this week as a freshman, in a regular classroom. He does well academically.
A budding performer who loves the stage, Joe Jr. auditioned and won a starring role as Friedrich Von Trapp in this summer’s production of “The Sound of Music” at Artpark.
“I was just so impressed with him,” said Joe Sr., an attorney who works as a consultant for a technology company. “He’s so passionate about the theater.”
Julie said the social interactions of life are the “biggest challenge” for her oldest son right now. His interests include singing, acting and video games.
Reilly, the youngest, is doing well in her school setting, her mother said. “She’s singing a lot,” Julie said.
Jake, the second youngest, has been enjoying his backyard plastic pool and the playground set that the family recently added to their yard. He has to be discouraged from climbing to the top of the set, his parents said. “He loves it so much,” Julie said.
Quinn, the middle sibling, participated in a Special Olympics event in Cheektowaga this spring, and earned a ribbon for his throwing prowess. His parents are proud of videos they shot of Quinn at the athletic event, clapping and running, playing to the cheering crowds.
“Quinn’s our rock star,” said Julie, with a laugh, watching some of the videos on a recent afternoon.
The Greenan children, other than Joe Jr., are limited in their verbal abilities. But Quinn has added new words to his repertoire since last summer, his mother said.
“He has at least 50 words now,” she said.
Sam, the second oldest and most severely affected of the group, spent half a year as an inpatient in a top autism treatment center in Baltimore, his parents said. There, everything from his behavioral episodes to his medication were analyzed.
When Sam went to Baltimore’s Kennedy Krieger Institute, an expert at the institute said he had a “great chance” for improvement.
Sam returned home in January from Kennedy Krieger, which is affiliated with Johns Hopkins University and its medical school, showing improvement, according to his parents.
“We were so glad to have him home,” said Julie, who works part-time at Sisters Hospital. “And for a while it went well.”
Sam was sent home from the Baltimore center with a plan for his daily schedule, his parents said. They tried to keep to it as much as possible.
Since last summer, Sam has reduced his “stimming” – the repetitive movement of his fingers and hands designed to self-soothe – a good deal, his parents said. He also eats a wider variety of foods since he went to Baltimore. He doesn’t blow bubbles anymore using a plastic wand and bottle of soap bubble liquid, which he did often last summer, Joe and Julie said.
“They didn’t let him have them at Kennedy Krieger,” said Joe Sr. of the bubbles, which were another way Sam soothed himself. “Now he spits.”
But there have also been setbacks for the family – some of them serious.
Sam – who still typically needs three aides or caregivers around him at any time – injured a handful of staff members that have worked inside the Greenans’ home in West Seneca as aides and caregivers over the past few months, his parents said. The injuries included concussions, from Sam’s head-butting the aides, his parents said. An aide in the home on the afternoon a reporter spent with the family confirmed the injuries.
Sam is now taller and heavier than he was last summer, said his dad.
“He’s gone to a size six sneaker, which we recently bought,” said Joe Sr. “At 100 pounds, he’s in the range of his mother.”
Also, Sam recently lost his place at Summit, the Amherst school for autistic and developmentally disabled children where he was receiving education and specialized care, his parents said. Sam has not attended a mainstream school since kindergarten, according to his parents.
His parents said that was a significant blow, because they are running out of options for their son.
Challenges at school
At Summit Educational Resources, the Getzville organization that works with autistic children and others with special needs, administrators said they can’t discuss Sam’s case in detail because of privacy restrictions. However, the head of the organization said that it is always difficult for Summit to turn away a severely autistic child.
“It’s awful,” said Dr. Stephen R. Anderson, chief executive officer at Summit, which has 236 students enrolled in its school-age programs.
But, Anderson said, children in this more severe category stress the limits of what organizations and people can do.
“You can only manage so much, and your staff can only manage so much,” Anderson said.
Anderson would not discuss the injuries the Greenans said that Sam had caused to some aides in his in-home care, which Summit had also been providing until recently. But, he said, such injuries do occur, though staff members wear protective gear in handling some children.
“There’s a fair number of things that happen, and our staff do sometimes wear protective gear,” Anderson said.
There is always a chance that Summit and Sam may again work together in the future for his care, Anderson said.
The dilemma the Greenan family now finds itself in may point to a larger issue in the region and around the state, the head of Summit said.
The number of local families with children exhibiting the more extreme forms of autism is “not a huge number,” said Anderson, who has worked with children with autism for more than three decades, and who conducts and publishes research on the subject.
But, Anderson said, it is a population that he believes is underserved in Western New York and across the state.
“We may not have, as a community, sufficient resources for the children with autism and significant behavioral disorders, that most stress the system,” Anderson said.
The move toward closing residential facilities for the developmentally disabled, autistic, and others, and placing individuals into small group or individual settings, has been taking place over recent years, and has yielded some good results, said Anderson.
But, he said, there will still be a small population of people with severe situations that will need something more.
“There is a population of individuals who need those settings,” Anderson said. “And nobody’s planning for them right now.”
A family circle
On a recent summer day, the younger Greenan children were at home, taking advantage of the sun to play in the family’s backyard.
Jake splashed in the plastic pool and played in streams of water from the garden hose. He was naked for much of the time; like some children with autism, a few of the younger Greenan children have sensory and other issues that make them prefer to remove their clothing when they can.
Reilly walked out onto the deck overlooking the yard, clad – for the moment, her parents joked – in a pink appliqued bathing suit.
The children ran around, played on the swing set, went into and out of the house. Sam, clad in black shorts and a green Abercrombie T-shirt, walked around the kitchen and into the living room, followed by his aides.
At one point, Sam got upset. It was one of his old triggers, his parents said – his sister’s crying. When Reilly sniffled and wept, Sam went near the front door of the family’s home and began to cry. He jumped and lashed out with his hands. Joe Sr. blocked his son from getting too near the glass door.
“Sam, it’s OK,” Joe told his son. “It’s OK.”
Sam’s behavior continued, until the aides there to care for him pulled on arm guards and laid him down on a cushion on the living room floor. He bellowed a few times. They held him down with his arms spread until Sam calmed down.
Such an incident still happens, said Joe and Julie. But not as much as it used to, by a long shot. Still, as their son gets bigger and heavier, even a single episode in a day can be a lot to handle.
“I can handle him alone, but Julie can’t,” said Joe. “He can pop off at any time.”
Julie said she isn’t so worried about what might happen to her in curbing Sam’s behavioral episodes – both parents have been injured by their son before – but at what might happen to Sam or to one of his siblings.
“I can handle him,” Julie said, “but if I miss one time …” She trailed off.
Joe looked down at his arms, which were marked by past scratches.
“I’m blocking the bites,” he said.
However, the couple said that Sam’s episodes are getting shorter and less frequent as he grows older, and since his time at the center in Baltimore. That’s a major positive step, they said.
“He’s 70, 80 percent better,” his father said of Sam. “But the issue is, he’s 70 to 80 percent bigger.”
“The bursts are shorter – they are not as severe – but he can do more damage.”
Lately, the Greenans have been looking closely into their options for Sam’s future care.
They have been checking out schools and group homes for severely autistic and developmentally disabled children in Western New York and beyond, including in central New York. They have toured facilities and gone through interviews. Sam is now on two wait lists for admission to centers, his parents said.
“We’ve come to the conclusion that he probably can’t live with us much longer,” Julie said, of Sam.
The judgment was not easy to make. But, the Greenans said, they feel they don’t have many options left.
“Even coming back in the improved state he is in, (if) we miss one – if she starts crying, or if he gets mad – we can’t catch every one of those situations in the home,” said Julie.
Later on that afternoon, the Greenan family went to the in-ground pool at the nearby home of Joe’s father, a well-known attorney in West Seneca who has practiced there for many years.
Joe swam with the kids. Julie watched from the patio.
The family looked like any other group of happy, relaxed siblings and parents, splashing in the water, climbing on dad’s back for dolphin rides, daring to jump into the deep end.
Julie’s eyes followed her 11-year-old son as he swam around in his plaid trunks. Sam went underwater for a long time, and then surfaced, then went under again. He is really good at holding his breath, his mother said.
“We of course want him to be at home,” Julie said, gazing at the place where Sam used to be. “But we have no idea what we’re doing right now.”
“We don’t know what to do.”