Parents of children with special needs have to be incredibly resourceful. They face all the normal challenges of parenting, compounded by an onslaught of additional challenges, large and small, when it comes to helping their children get through the day and receive the services and schooling they need. But what do you do if you just received your child’s diagnosis and you’re feeling overwhelmed by the tasks ahead of you, not sure where to begin? Or what if you’ve been at this for a few years, but still feel like you could use some help in figuring it out? That’s where people like Stefanie Weiss, Sarah Birnbaum, and Joanna Dreifus come in. These moms have been there and back to help their own children—and have consequently set up advisory services to guide other parents in managing the kinds of medical, educational, financial, and bureaucratic challenges they faced.
The Doctor Connoisseur
A self-described mental health consultant, mom of three Stefanie Weiss works with parents of children who may have OCD, anxiety, PANDAS, ADHD, and other mental health disorders, matching their kids with the right doctors. A point of professional pride for her is that there isn’t a doctor she refers to whom she hasn’t already interviewed personally in the two-and-a-half years since she started the business.
“It really is very important for both parent and child to feel connected to the doctor,” says Weiss. “On some level, it helps the beginning of the healing process.”
Her services start with a consultation with just the parents, which includes an in-depth review of the child’s medical history. Depending upon the child’s disability, she may recommend a doctor in the initial meeting, or she may decide to do more research and consult with some of her regular medical experts before recommending a health professional. Once families decide to meet with the recommended doctor, Weiss will forward along a synopsis, which, as she describes it, helps to create a level of comfort and familiarity even before they arrive at the medical office. She also encourages families to follow up with her to ensure they’re on the right track. “I want to know what the doctor had to say, and I also want to be there for the patients,” she notes.
Weiss originally started her special needs work on Long Island, and she’s had an office in Manhattan for the past year. She says her motivation is two-fold; she’s fascinated by the work and empathizes with parents struggling with the possibility of their child needing special treatment. She’s been there herself with her son, now a sixth grader, who was ultimately diagnosed with PANDAS, which Weiss describes as a predisposition to anxiety and OCD brought on by an unusual form of strep.
In her experience with her son, she learned that “a parent is a child’s best advocate. You know your child better than anyone else. If you think something is wrong, you better stick up for [him or her],” she says.
By sparing parents the hassle and discouragement of trying to work with the wrong doctors, Weiss aims to keep time, worry, and expense in check through a boutique consultation experience that’s personal, specialized, caring, and, most of all, helpful. Plus, she’s so jazzed by her work that she regularly posts related articles and studies on Facebook and Twitter, helping other parents stay in the know.
For more information, visit askstefanie.com.
Sarah Birnbaum remembers the moment doctors shared the news of her child’s mental health evaluation. After her awkward laughter wasn’t returned, the truth of her first child’s condition fully seized her.
“That was the beginning of my new life,” Birnbaum says, whose daughter is on the autistic spectrum.
In the course of that new life, doing everything she can to help her daughter, Birnbaum has gathered a wealth of information on doctors, schools, support groups, government programs, and anything a local family with a special needs child might require.
After years of informally advising friends and acquaintances on every manner of challenge related to getting their children the right services and schooling, she took up a suggestion to turn her knowledge and empathy into a business as parent advocate and special needs advisor. She launched New York Special Needs Support in the spring of 2008.
As Birnbaum describes on her website, her professional experience as a web producer, with an emphasis on “keeping track of many moving parts and doing whatever it takes to move a project forward to its deadline,” gave her the skills and attitude she needed to help her daughter.
“My goal is to be to parents whatever it is they need me to be, until they don’t need me anymore,” she says.
To that end, Birnbaum meets with families to hear their stories and provide resources, options, and advice for sorting out schooling, mental health evaluations, doctors’ appointments, and anything else that might fall through the cracks along the way.
“I describe myself as that tesseract from A Wrinkle In Time,” she says, referring to the special space portals in the classic children’s book. In other words, she sees herself as closing the gap between her client’s needs and the appropriate solutions.
And her work doesn’t stop at consulting. She gives free talks several times a year to inform groups of parents about how to navigate the system and be advocates for their children.
“You will notice things other parents don’t notice and you will notice things that doctors won’t notice,” she remarks. “You are privy to new, secret knowledge that you probably never wanted to know.”
For more information, visit nyspecialneeds.com.
Joanna Dreifus felt a connection to children with special needs long before she became a mom caring for two of her own. It began with her mother, who was a special needs teacher. When Dreifus was in high school, her mom helped her get a job at an afterschool program where she assisted kids with Down Syndrome and other disabilities. “Honestly, I’ve always been interested in child development, health, and related issues,” Dreifus says. “When other kids were into sports, I was the candy striper.”
Ultimately, she garnered a master’s degree in public health from Columbia University, and her impressive professional achievements include being a board member for the YAI Network—one of the largest social service agencies in the city—and a grant maker at New York Community Trust, where she helped fund health organizations serving people of all ages with special needs.
Divorced when her children were very young, Dreifus has spent much of her parenting life as a single mom, ensuring that her son and daughter, now six and nine respectively, get the services and schooling they need.
“Between them, I feel like we’ve taken on the entire alphabet of special needs diagnoses,” she says.
In January of 2007, while she was still married, Dreifus launched a shopping blog for moms aptly called My Mom Shops. Though there was no overt connection to special needs, Dreifus has found that whenever she alludes to something going on with her children, or runs an article on special needs products for her kids, the response is always strong. It’s what first gave her the indication that there was some kind of advisory role for her in the special needs world.
A few years later, she wrote an article for New York Family called “20 Things To Know If Your Child Has Special Needs,” which focuses on many of the everyday challenges that parents face, like dealing with haircuts or finding a bit of time for themselves.
“I want to pay it forward because I really have such a wealth of experience,” she says.
After years of advising friends and acquaintances informally, she launched the website Special Kids NYC in June, to help parents of children with special needs deal with everything from developmental delays to neurological disorders to mental health issues. After a private consultation, she’ll work with parents to address issues big and small, from how to get their child the best schooling to how much to disclose about their child’s diagnosis or condition to others.
For more info, visit specialkidsnyc.com.