Arc and Family Struggles to Cope

With TAP closed, family advocacy programs on hold, what are families to do as the
state goes without a state budget for four months?

Advocates of the Going Home Campaign meet today to discuss legislative strategies
on the budget impasse and community living.

Story from the Washington Post below.

Tony

BY HEIDI DE MARCO THE WASHINGTON POST

Alexander Brown swings back and forth on a makeshift hammock bolted to a
wooden beam in his living room. The swaying seems to soothe the otherwise
uneasy 14-year-old. His mother gazes at him from the couch and their eyes
briefly connect.

“I would love to be in Alexander’s head just for a few hours,” said Diane Brown,
her head slumped against her hand. “He’s having a hard time going through
puberty right now.”

Alexander is confused, moody and frustrated — all very typical for a teen during
adolescence. But Alexander’s transition is especially difficult for the Browns, a
family of six in Sherrill, N.Y., because he is severely autistic.

Puberty is causing chaos in Alexander’s once-predictable world. He can’t talk
and struggles to express himself. “He’s angry and he’s sad . . . and he doesn’t
understand why,” Brown said. “I truly feel for him.”

Alexander, the third of four children, rarely sleeps through the night. He gets up
at all hours to wander the kitchen, take a shower or throw a tantrum. He’s begun
lashing out physically.

Brown, 45, is exhausted. She averages four hours of sleep a night and powers
through most days with the help of Red Bull.

The Browns all have what they call “war wounds” from dealing with Alexander:
scratches, bite marks and bruises. When he’s in a mood, they say, no one is
safe, not even the family dog.

“He clawed up my arm and it angered me,” said Alexander’s 11year-old
sister Maya, the youngest in the family. “But what are you going to do?”

The sixth-grader has to be alert when her brother is around. “If I see Xander
run towards me, I just run into another room so I don’t get attacked,” she said.
“You grow used to it.”

Brown, who sneaks cigarettes every now and then to calm her frayed nerves,
compares the experience to riding a roller coaster without a restraint – for
both child and parent.

Worse, she said, it’s the family’s second time on this terrible ride.

Alexander has a 19-year-old brother, Connor, who also has severe autism.
The eldest child, he can’t speak much or care for himself. Six years ago, he
became so physically aggressive that the Browns couldn’t handle him.

The final straw came when Connor knocked his parents down as they tried to
force him onto his school bus. The driver insisted he be secured to the seat
using a soft body restraint to keep his arms from flailing. After that, the
Browns decided to move Connor to a 24-hour-care facility at the same site
where he and Alexander attend school during the day.

“We sat on the back step . . . and we cried,” said Brown, her voice trembling.
“It was a realization at that moment that this was something that we had to do
for all of us.”

Coping with two severely autistic sons five years apart, the Browns have often
felt isolated. But their troubles are far from unique.

For every 68 American children, about one is estimated to have autism
spectrum disorder, a developmental condition that impairs communication,
behavior and social interaction, according to the Centers for Disease Control
and Prevention. Some cases are more severe than others.

Scientists don’t know all the causes, but most agree that the condition has a
strong genetic component. It afflicts many more boys than girls, and parents of
one child with autism are at higher risk of having another. One study found that
nearly a fifth of young children with older autistic siblings had the disorder, and
the risk was substantially higher for boys.

Many families are unprepared for a second diagnosis, much less for guiding
two autistic children into adulthood.

Aggression is relatively common though hardly universal in autistic kids.
According to one study, parents reported that 68 percent had demonstrated
aggression toward a caregiver at some point and 49 percent to non-caregivers.

Other research has found that aggression among autistic children contributes
to parental isolation and exhaustion, threatens the safety of the kids
themselves and other family members, is the leading cause of stress for
caregivers and is the primary reason that families seek to have children placed
outside the home.

Research is limited on autistic kids who are going through puberty. But some
experts suggest that while children’s behavior may improve during elementary-
school years, it can deteriorate with the physical and hormonal changes that
come with adolescence.

The vast majority of autistic children remain in the family home, and just 2
percent live in outside supportive facilities, according to one study. Some
advocates and providers say home is the best setting for such children,
because the risk of abuse, neglect and exploitation is greater elsewhere.
Others say living in a more structured setting may offer advantages for some
kids and their families.

“The reality is that for a lot of autistic kids, normal family life is pretty chaotic. A
group home might add a little bit of structure to the equation,” said Brad
Boardman, executive director at the Morgan Autism Center, which provides
individualized education but not residential care for children with autism in the
San Francisco Bay area.

“It can also be beneficial to families who have got into a negative pattern with a
child or are seeing aggressive behavior at home,” he added. “Sometimes a
move into a residential group home can be a way to reset the relationship.”

The Browns have wrestled with this question for years: What is the right thing
to do — for the child and for the family as a whole?

When Connor was born, his mother knew next to nothing about autism. “He
didn’t make eye contact. He cried a lot. He was a very difficult infant,” she said.
“Me being a first-time mom, I thought, ‘I’m doing everything wrong. This is my
fault.’ ”

He was diagnosed at 3, Brown said, and never received the early interventions
commonly used today.

Connor was always aggressive, Brown said. His reaction was always to get
mad, throw a tantrum or break something. And when he reached puberty, his
behavior became much worse.

“Ever since I can remember, Connor would throw random fits,” said Spencer,
17, the second-oldest of the four siblings. “He had my mom in a chokehold
once . . . and I had to try and help.”

Alexander’s life has been easier, partly because Connor came first. After
spotting Alexander’s early cognitive delays and unusual emotional reactions,
she took him to a pediatrician. He was diagnosed with autism spectrum disorder
at 18 months and began receiving a wide range of state-funded services,
including speech, behavior and occupational therapy in the home.

Still, Brown was devastated. She kept thinking about the first time she held
Alexander, full of hope. “You expect as a parent that you’re going to love your
child and instantly have that bond,” she said. “Then they don’t love you back,
and you blame yourself.”

“I honestly felt like I didn’t have the strength to do it again,” she said.

To relieve the stress, she started a blog about having two autistic sons. She did
yoga. She took a job at a local cafe to have something to do outside the home.
And she took care of Connor and Alexander the best way she knew how.

Five years ago, not long after Connor moved into the residential facility, Brown
said, she became severely depressed. “It hit me really hard for a while. But I
had to quickly snap out of that.”

Spencer and Maya struggled, too.[Picture]HEIDI DE MARCO/KAISER HEALTH
NEW

Diane Brown makes a shopping list with her autistic son, Connor Brown. Connor,
19, was enrolled at the Tradewinds Residential Facility after a period of
aggressive behavior during puberty. Diane visits Connor every other day.

“It’s hard to have friends come over when all you hear is screaming in the
background,” Spencer said. “They’ll ask, ‘What’s that?’ ” And with a shrug of his
shoulders, he replies, ”Oh, that’s just my brother.“

On their good days, Maya said, Connor and Alexander can be “the sweetest
boys.” Alexander will sometimes kiss her cheek or play with her on a
trampoline at their grandmother’s house. Their mother said: “It’s not like they’re
monsters or anything. They’re just a little bit different.“

Lately, though, Alexander has become harder to handle. He’s taller than his
mother now, and he will outweigh her soon. Brown struggles to get him dressed
and shave his sprouting mustache. He doesn’t lash out as violently as Connor
did, but she can’t control him when he does.

Brown’s husband — the children’s father — recently moved out of the house,
because, she said, of escalating tensions. (Research on marital breakups among
parents with autistic children is mixed. Some shows virtually no difference from
other families, but other work suggests a higher rate of divorce, particularly as
children get older or as their behavior becomes difficult.)

The father comes daily to help with the children and household tasks. But Brown
frets about everyone’s safety and well-being, including Alexander’s.

“When you have a child who just existing is so hard for them and you can see
them struggle with it every single day . . . you want to make it better,” Brown said.
She has sadly come to believe that “making it better” means moving Alexander
into the same around-the-clock care that his older brother receives.

“Alexander, just like Connor did, has outgrown our little family here,” she said.
“I’m certain at this point it’s time. Time for someone to step in and be stronger
and more awake than I am.”

She has put him on the waiting list for the facility where Connor lives, a 15-minute
drive from the house. There he, like Connor, would be able to see counselors
and behavioral therapists, enjoy some recreation and get the structure and
support he needs.

“It’s not elaborate, but it’s comfortable and fully staffed,” she said.

Alexander’s care, like Connor’s, would be paid for by the Social Security Disability
Insurance program, state school funds and Medicaid.

Maya says she understands. “I know it will be better for him and safer for us,”
she said. “But I will miss him so much when he’s there.”

Talking of Alexander’s departure, Brown seems less at peace than resigned.
She knows she’ll feel emotional and empty when he’s gone — that’s how it was
with Connor.

“I just want them (both) to be happy in their skin,” she said.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org