By Ben Tinsley
DALLAS — A 2015 photo taken during Purim does a wonderful job of reflecting the love in the Englander family.
On the left is little Adira Englander, clutching an “Olaf” doll from the movie Frozen. She is sitting in the arms of her mother, Dena Rosenberg-Englander, a former social worker.
On the right, Alexandra, 6 — held by her father, Simon Englander, an area attorney — is dressed like “Elsa the Snow Queen” from the same movie.
It is a happy, happy photo. Smiles beam all around.
Moments like these don’t come around every day — particularly for Dena Rosenberg-Englander and her family. The Englanders have to balance a high level of stress and work with their daily lives tending to the special needs of Adira, who was born with micrognathia, a birth defect that created a lower jaw that is smaller than normal.
In Adira’s case, her jaw is too small for her to eat and a feeding tube must go in through her stomach to nourish her.
“And as she got older, there were other developmental milestones she wasn’t hitting,” her mother explained. “We started therapy and she was diagnosed as autistic with developmental and medical problems.”
Adira’s condition necessitated her parents’ hiring a 50-hour-a-week nurse. But even with that medical assistance, Rosenberg-Englander still spends the majority of her time tending to her daughter, taking her to various places and driving her around.
“Things have gotten easier as my daughter has grown older but some days she is still a lot of work,” she said. “We are lucky because we have families and some support. I’m really lucky my husband is so capable.”
But still, it can all get to be a bit much. This is why Rosenberg-Englander was enthusiastic when she located a special support group of understanding parents with whom she could discuss and share ideas regarding care for her daughter.
This is Jewish Family Service of Greater Dallas’ parent health group “Parents Empowered Raising Kids” (PERK), which creates social and support connections among adults who are raising children with special needs.
Rosenberg-Englander said the group has helped her make really good friends.
“I now know the resources that can help,” she said. “I just know there is someone else out there.”
The organization’s events are facilitated by professionals from the JFS Special Needs Resource Team. They are designed to give parents tools and support for everyday challenges, said Michael Fleisher, JFS executive director,
“PERK is a great place, where individuals and families come together over a common challenge,” Fleisher said. “Members of the group meet to discuss their needs with themselves and people of expertise. … No matter what challenges the children may present, all parents have learning curves when it comes to addressing needs and assisting with the problems of their children. The feedback on the group has been very positive.”
Jewish heritage a struggle to teach
Meanwhile, one of Rosenberg-Englander’s big concerns about her daughter’s condition is that Adira didn’t seem to be absorbing much about her Jewish heritage.
“My other daughter Alexandra goes to a Jewish school,” she said. “There are a lot of benefits to having an older sibling. Most of Alexandra’s friends will let Adira tag along and play with her. They play hide-and-seek and other games with her. But — Adira’s not really playing.”
Trying to help Adira’s Jewish learning has been frustrating, Rosenberg-Englander admitted.
“We tried to teach her some things and then hired someone to do the same a few hours a week,” she said.
This is one of the many issues discussed by the PERK group during sessions.
Group member Judy Kogutt of Dallas has a 26-year-old special needs son named Asher —who has suffered from developmental delays since he was 18 months old. Kogutt understands fully well the trouble a special needs child can have getting and retaining a Jewish education. For many years, she has explored the issue of Jewish education for special needs children.
“It’s very important — I have been working on that for Asher since he was 3,” Kogutt said. “Unfortunately, they’re not any closer than they were then. Many people have to leave Jewish day school programs to find somewhere they can be accommodated. Luckily some of the supplemental schools are getting more programs.”
Kogutt describes the PERK group as a good opportunity for parents to get together and share crucial information.
“JFS provides us with a moderator-type person,” Kogutt said. “He helps keep us on track during meetings. Or, if there is a lull, he kind of throws something out there to stimulate the discussion or give input. … During the meeting, people come in, eat, speak, and stay afterward to chat.”
Michael Fleisher said in addition to PERK, JFS officials have worked with a variety of help groups over the years that have addressed a number of different areas and invited the community to participate.
“We try to address these concerns,” he said.
Basically, the PERK meetings consist of coffee and conversation resulting in shared connections and parenting support for families with special needs children. A professional from the JFS Special Needs Resource Team facilitates an interactive conversation with the parents, specifically tailored to their issues.
All information shared in PERK gatherings remains confidential within the group, which meets in the homes of parents once a month.
Englander said the PERK group has been going for a year and a half.
Generally the group meets on a weeknight, around 8 p.m. or so, and meetings are open-ended, lasting as long as needed.
Topics can be as simple as the best place for a child who has trouble sitting still to get a haircut from a patient barber or hair stylist, or as complex as what kind of care to get a special needs child.
Rosenberg-Englander — herself a JFS volunteer —said it is important to meet with people who understand your situation.
“People like to come to our meetings,” she said. “It’s good to have a place where you can bounce ideas off others and figure out how to get services in Dallas and Texas.”
Michael Fleisher said JFS has been involved in discussions with Temple Emanu-El and Congregation Beth Torah leaders to create similar groups around these issues as well as the issues of addiction and recovery.
“These would be led by volunteers and people involved in that particular process and also — like this group — include professional guidance from time to time,” Fleisher said. “We have also been in discussions with parents who are concerned about the challenges teenagers face. This process is something that we very much encourage and invite those in the comity to reach out and engage us about.”
The subject of the next PERK meeting is “The Role of Grandparents in Special Needs Parenting.” It begins 8 p.m. Monday, July 20 at the home of Judy Kogutt, 5708 Willow Lane.
Anyone wishing to attend the meeting can RSVP to Dena Englander at Denglander612@gmail.com.