Joey Milstein loves his independence. He loves to blare Spotify, tidy his room and do laundry. He finds joy in activities like crafts, yoga, and dance class. He greets friends daily with a fist or elbow bump and gives his parents hugs and kisses on the weekends. Known for expressions like, “I’m thankful to be me,” and, “I’m spectacular,” Joey creates a ripple of smiles wherever he goes. When the 24-year-old was born with developmental disabilities, his mother accepted that life wouldn’t look typical for Joey, but she held onto hope that he would still live a meaningful, happy life. She credits Annandale Village for making her dream come true.
A Scary Start
Jed and Shelly Milstein, of New Jersey, were excited to start a family. They started trying in 1997, but soon learned their odds of conceiving on their own were slim. They chose to try in vitro fertilization and harvested 13 eggs, resulting in eight viable embryos. Three were implanted.
“We went to that first ultrasound and there was one heartbeat, two heartbeats, three heartbeats,” said Shelly Milstein. “We were overjoyed.”
Shelly was working full-time as a litigation attorney at a large firm in New Jersey. She knew she would not be able to work throughout the entire pregnancy but didn’t expect to leave at 16 weeks.
“The doctors didn’t even tell me I had to go on bedrest. There was no other option,” said Shelly, whose 5′8″ small frame grew rapidly. “I’d reach for a glass of water just two inches from my hand and couldn’t get it.”
Credit: Shelly Milstein
Credit: Shelly Milstein
Strong contractions began when she was 29 weeks along. Shelly assumed doctors would stop labor when she arrived at the hospital, but they had other plans. Joey, Lauren and Sam Milstein were born December 13, 1999. Joey and Lauren weighed nearly 3 pounds and Sam was just 2 pounds 2 ounces. All three babies went to the neonatal care unit.
“I wasn’t terrified right away,” said Shelly. “It didn’t all sink in for a while, but there were 100 indications that something wasn’t OK with the boys. There were new issues every day and so many miracles along the way. Someone would have a brain bleed, another would have a stomach issue, another would have a heart issue. It was such a roller coaster. Anything that can go wrong with a pre-term baby went wrong with at least one of my babies. Joey had the most medical issues.”
Joey had a grade 4 brain bleed. The Milsteins were told his motor skills would be affected. He had a series of spinal taps because of fluid accumulating in his head. Ultimately it was determined that the spinal taps weren’t working, so a shunt was put in when Joey was nine weeks old.
The Milsteins brought their trio home on Valentine’s Day 2000, along with breathing monitors and night nurses.
“That time is such a blur,” said Shelly. “I tried to be meticulous. I kept charts of when they ate, peed, pooped. I pumped milk for all three and our house had a revolving door of friends and family coming to help. We needed an entourage anywhere we went.”
As is common with premature babies, the Milstein triplets had developmental delays. The gap between the boys and Lauren began to widen quickly as she achieved milestones before them, walking and talking up a storm while the boys lagged. Sam was diagnosed with autism as a toddler, while Joey’s diagnosis was more in the gray area — things like cerebral palsy, behavior disorder, autism and intellectual disability have all been tossed around.
For years Joey cried inconsolably and constantly banged his head as a way of coping and communicating. Among other therapies, Joey worked with a behavioral therapist.
“All I wanted for Joey was for him to be able to communicate without so much frustration,” said Shelly. “He got the basics down — walking, talking, using the bathroom, but I was afraid his behavior would hold him back. I dreamed of getting to the point where he wouldn’t bang his head and by late elementary school, he became the poster child for behavior (therapy). He went from being unmanageable to sweet, obedient, and only wanting to please. It was literally life changing.”
Credit: Shelly Milstein
Credit: Shelly Milstein
Big Moves
In 2012, when Jed had the opportunity to take a new job that would allow for more family time, the Milstein family moved to Marietta.
“The kids were starting the seventh grade, and we chose Marietta specifically because we wanted the best schools for all three of them,” said Shelly.
While Lauren thrived in advanced placement classes, and Sam was enrolled in a full-time program to improve his communication, social and adaptive skills, Joey attended Walton High School where he was in mainstream classrooms part of the day and special education classes the other. Joey played the euphonium in the school band and worked at the school coffee shop throughout high school.
“Joey was very popular in school,” said Shelly. “He went to prom every year, people always called out ‘Joey!’ when they’d see him around. He was like the mayor.”
After high school, as Joey watched his classmates head off to college, he was excited to take a leap. In the fall of 2020, he landed at Annandale Village, where Sam was already living.
“Sam and Joey are very different, they’ve never been in classes or anything together, so if it’s right for Sam, who is minimally verbal, Joey assumes it’s not right for him,” said Shelly. “But once he got to Annandale and saw it for himself, he realized it was the best of everything.”
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Credit: undefined
An Independent Life
Tucked out of sight in the bustling city of Suwanee, just 30 minutes from the Milstein’s home, is Annandale Village, a nonprofit residential community for individuals with intellectual or developmental disabilities and acquired brain injuries. Annandale was established in 1969 by Dr. Maxwell Berry and his wife Elizabeth, who dreamed of the perfect place for their daughter Libba, who was born with developmental disabilities. A stark contrast to the institutions of that time, Annandale was designed to be a warm home setting that could care for Libba when they no longer could, a place that would give her opportunities to meet her potential.
Today there are approximately 150 villagers spread across the independent and semi-independent living apartments, cottage residences, two assisted living centers and a center for skilled nursing.
Annandale services range from $1,500 to $5,300 a month, based on level of care and support needs. Fees are offset 20% thanks to the philanthropic community, and residents of more than 10 years have access to scholarships. In addition, Medicaid and Medicare are utilized.
Joey lives in a semi-independent apartment. He has his own bedroom and shares a bathroom and kitchenette with his suite mate and buddy, Aidan. Joey has the freedom to walk all over the 55-acre campus, from his house to the dining hall, to the activity center and the walking trails. His days usually begin at Jackson House where he meets with a group for morning meetings and games.
“I love doing crafts, meditation and exercise, and I like having conversations at Jackson House,” said Joey, whose smile is ever-present. “I really love to make my bed, and I do my laundry by myself on Saturdays, and Aidan and I like to listen to music together.”
Joey won the Annandale’s Got Talent show in 2022. He sang “Bad Habits” by Ed Sheeran and dropped the mic at the end of his performance.
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Credit: undefined
“The show was just the best,” said Shelly, who brought friends to cheer Joey on. “It’s so obvious that he’s happy and thriving at Annandale, as is Sam, and that’s all any parent would want for their child. We could continue to try to cobble together ways to meet their various needs, but Annandale provides comprehensive one-stop shopping at a level we simply wouldn’t be able to provide. Living on a campus with their peers allows them to experience and enjoy community in a way they never would if they lived with us. Instead of scavenging for social opportunities, they have built-in friendships.”
Like the Berrys, one of Shelly’s greatest fears was wondering who would take care of Joey and Sam when she and Jed no longer can. Now that their sons are at Annandale, the fear has evaporated.
Annandale offers all levels of care throughout an individual’s lifetime, which means Joey and his brother never have to leave their home or their friends.
“I see my family often,” said Joey. “My mom is really beautiful. She calls me Joe Joe.”
Shelly and Jed take their sons out to lunch most Sundays. Joey prefers Taco Mac because he likes to participate in Brewniversity, sampling different beers and accruing points and prizes.
“They like to be out and about, but they’re always glad to get back home. Annandale is their home, and they love it,” said Shelly. “We’re so relieved and grateful that they will have that for the rest of their lives. We know we won’t be here forever, so we take immense comfort in knowing Annandale will always be here for them and they will be loved, supported, respected and cared for.”
Joey calls his mom at least five times a day. He talks to her about his day, asks about her day, he always says he loves her, and he loves Annandale Village. He often says, “I’m happy that I’m happy,” which is music to Shelly’s ears.
“I’m happy that you’re happy, Joe Joe.”
To learn more about Annandale Village, visit annandale.org
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