J

uby Shapiro’s life started out idyllic. One incident she fondly recalls illustrates her parents’ devotion to their family. It was Juby’s birthday, her parents had planned a fabulous party for her, and she’d invited all her friends. But it was snowing heavily. One by one her friends called to let her know they were unable to come to her birthday party. Her parents went out in the snow and picked up all the girls.

“That was typical of my early childhood,” Juby says. “My parents prioritized their family. I remember spending many Sundays with my family traveling from our home in Silver Spring to the museums in Washington, D.C., going on picnics, and taking walks in the woods near our home.”

Sudden Blow

When she was in ninth grade, her mother picked her up from school one day to take her to an orthodontist appointment. “It was a beautiful, sunny day in November,” Juby remembers. “When she dropped me back at school, my mother asked what I wanted for supper. I waved goodbye as the van pulled away. My 20-month-old sister was in there with her.”

About half an hour later, the school received a call that Juby’s mother was involved in a car accident around the corner from their home. She was rushed to the hospital, but died upon arrival. She was just a month short of 39 years old. Her baby sister, who was strapped in her car seat, survived without injury, baruch Hashem.

“My mother’s death was devastating,” Juby says. “My world came crashing down in a matter of minutes.” In the weeks and months that followed, it was difficult adjusting to the new reality, while at the same time being there for her younger siblings. “I was hoping that this was a nightmare that I would soon awaken from. I was really sad — and angry at the same time. I kept asking Hashem, ‘Why did this happen to my family?’ I finally told myself that I may never know the answer.”

She channeled her energies into accepting the ratzon of Hashem and focused instead on becoming closer to Him. With time, she came to understand that Hashem loves us and as excruciatingly painful as it may be, challenges are for our growth only and are not meant to destroy us.

That realization would carry her through her life.

Missed Milestones

In the summer of 1989, Juby married and moved to New York. In October 1990, she gave birth to her first child, Aaron Meir. He was a beautiful, healthy baby with big, bright eyes. He was very alert, aware, and friendly, and met all his early developmental milestones.

When he was ten months old, Juby was reading a book on child development. According to the book, Aaron Meir should have been clapping his hands, waving “bye, bye” and pointing his finger by then. The pediatrician was not concerned and told her that all children develop at their own pace. But at 12 months, Aaron wasn’t even pulling himself to standing. At his one-year checkup, she asked the pediatrician about it, and he again reassured her that everything was okay.

“Einstein spoke at three,” he told her, but to allay her concerns, he advised her to see a pediatric neurologist.

Juby did her research and made an appointment with a top pediatric neurologist at Columbia Presbyterian. “As I sat in his waiting room, I kept asking myself, ‘Why am I here? Why am I looking for trouble? He’s fine. I’m just a nervous first-time mother.’ ”

The neurologist examined Aaron and asked Juby a lot of questions. “He called Aaron’s pediatrician and took some notes. I saw him writing numbers on his chart. He then looked up at me and told me we have a problem.”

Aaron’s head circumference was very small. When he was born, it had been in the 50th percentile. By ten months, his head circumference had dropped to the tenth percentile, and at 14 months old, it fell between the first and second percentile. His small head circumference, called microcephaly, was due to a slowing of his brain growth. The neurologist told Juby there was nothing that could be done.

“I listened in complete shock and disbelief. I kept thinking this can’t be true,” Juby says. The doctor could give no answers as to why this had happened. It was an extremely rare case, since Aaron was born with a normal head circumference, and most incidents of microcephaly are congenital.

“When I asked him how that would affect Aaron’s development, he told me he would never read, wouldn’t speak more than a few words, and may never walk. He told me to get early intervention for Aaron and to undergo genetic testing so this doesn’t happen again.” I was pregnant with my second child at the time.

“I bundled Aaron up in his snow suit and left the office in a state of total shock. I sat in my car, crying. I had gone to the neurologist as a precaution, but now I was told that my smiley, bright-eyed baby was going to be severely disabled for the rest of his life! It just didn’t make sense.

“I initially went through denial. I was sure the doctor was wrong, so I went for five other opinions. Sadly, his diagnosis was confirmed. I felt completely lost. I wasn’t from New York and had no support system there.”

When the doctor told Juby to get early intervention for Aaron, she didn’t know where to start, who to ask, how to navigate the system. It bothered her that a highly renowned doctor who saw thousands of children a year could not even give her a referral number for early intervention. This was the 1990s, and there was little public information about special-education services.

Juby called her grandmother in Florida and explained what was happening.  Her grandmother felt pained, but didn’t know how to help. She went to see her rabbi in Bocca Raton, Florida, for advice. The rabbi had just moved from New York. His wife was an occupational therapist and she’d worked for an early intervention agency in Brooklyn, just a mile from Juby’s house! It was there that Aaron received special education, physical, occupational, and speech therapies.

But progress was slow.

A Second Challenge

Several months later, Juby gave birth to her daughter, Chana Bracha, whom she named after her mother. “Chana was a baby with a precocious personality. The therapists who worked at home with Aaron used to call her a ‘textbook baby,’ because her development was completely on target.”

But then at ten months old, Chana developed a high fever and had a seizure. She then had three additional seizures and her temperature shot up to 106 degrees. After her third seizure, the pediatrician recommended that Juby take her to a neurologist.

“I took Chana to the doctor, and he performed an EEG test which came back fine. As I was leaving, the doctor said that since he saw on Chana’s chart that her brother has microcephaly, he should measure her head. He said, ‘It’s on the small size, in the tenth percentile, but she’s fine.’ ”

Juby panicked and went back to her pediatrician and asked him to check his records for Chana’s head circumference from birth until now. She had asked at every visit for her head circumference to be measured, and now found out that he had actually estimated the numbers and not plotted them accurately on his chart. The doctor became enraged and told her she was a paranoid parent and just because her older son has a disability, it didn’t mean that her daughter did too.

But a visit to the neurologist a few months later confirmed her worst fears; Chana also had microcephaly. “I could not believe what I was hearing. This couldn’t be happening again. I was in my early twenties and had two severely handicapped children.

“When Chana was diagnosed, it was a very difficult time for our family. There was no one to talk to or reach out to. I was home alone, had no help at all in the house, was doing everything myself, and running to countless doctors and specialists, determined to find a cure.” Top neurologists in the field had no answers. They could not identify any gene malfunction or come up with an explanation for her children’s condition.

Juby desperately needed help. Aaron’s social worker from the early intervention center had told her she could apply for respite care and gave her the name of an agency that could help. “I was placed on a waiting list for nine months. When I was approved, they gave me four hours of help twice a month. After Chana was diagnosed, I contacted the agency again and told them about Chana and asked for more help. They told me there are other people who have needs and I shouldn’t be greedy.”

After six months of running from specialist to specialist, Juby developed a severe case of mononucleosis (mono) and was told to stay in bed for the whole summer. Aaron, who was four years old at the time, also caught the virus. As she was her children’s only caretaker, it was a serious crisis. She made numerous calls and discovered that not only was there was something called emergency respite care, but you could apply to several respite care agencies and obtain hours from each.

“I couldn’t believe it. All I had to do was know whom to ask! There were services and supports out there that I never knew about that would have made such a difference.”

Additionally, the Medicaid Waiver program had recently been created in New York, which provided government funding for long-term care for people living at home, not just in institutions, as had been the case prior. After Juby applied for the program, Aaron and Chana were approved for many hours of help.

During this time, Juby learned the meaning of real chesed. “It’s not enough to offer to help or tell someone, ‘If you need me, call me.’ You have to offer concrete solutions,” she says. “My neighbor, Batsheva, was wonderful. She always came up to my apartment and asked me what she could get me from the store.

“One year, Chana had a seizure on the morning of Erev Yom Kippur and I was in the hospital all day with her. I stopped on the way home to buy some food, knowing I had nothing prepared, but most of the stores were closed, and all I could find was cake. I worried how I’d start the fast on an empty stomach. When I walked into my house, there was soup, chicken, everything we needed. I was so touched, I cried.”

Juby emphasizes the importance of accepting help when we need it. “One thing I learned from raising Aaron and Chana is that I couldn’t do it alone. I had to work on myself to accept that I needed help. I have truly been blessed through the years. Hashem sent me wonderful people who were there and made a difference in our lives.”

An Organization Is Born

The summer Juby was sick with mono was a turning point. For the first time since the children had been diagnosed, she found time to stop and think. Until that point, the main focus of her life was caring for her children and attempting to find an explanation and a cure for their condition. “When I first got mono, I asked Hashem, ‘How could this happen? I can’t do anything to help my kids, and I’m stuck in bed.’ ”

But in hindsight, it was the biggest brachah. “It was Hashem’s way of telling me to stop and slow down. Stop running around looking for answers,” Juby says. “I remembered a poem that one of the kids’ therapists gave me called ‘Welcome to Holland.’ The poem compared having a special-needs baby to planning a trip to Italy, but unexpectedly landing in Holland instead and having to adjust to the reality of being in a place you did not expect to end up.”

Juby thought, When you travel to a foreign country, it’s much better to have a tour guide who knows their way around. She wished there was someone out there who could help give her guidance, direction, and support. Then it occurred to her that if she started a mother’s support group, she and the other mothers could share information, and help and support each other. When she recovered, Juby was determined to start a mother’s support group.

“It’s interesting that when I started organizing the group, I met with resistance from the agencies and schools I approached. They told me that parents were in hiding and didn’t want to meet with other parents. I told them even if there are only five other meshugenes like me, we could have tea once a month. I felt so passionate and was so convinced it was the right thing that I went ahead in spite of the negativity.”

She arranged a meeting and gave out flyers. She got permission from the Greater New York Savings Bank on 13th Avenue to use their meeting room for free. At the first meeting there were ten mothers. It was a cross section of people from all walks of frum Jewish life; chassidish, litvish, Modern Orthodox, and Sephardi. Fifteen mothers attended the second meeting. By the third meeting, 60 people, mothers and fathers, attended.

“The meetings were focused on providing information. We covered a wide range of topics of interest to parents, including divrei chizuk, government programs such as the Medicaid waiver, special education law and our rights, social security disability payments, therapeutic techniques like sensory integration, behavior management, etc. It empowered the parents. There was a palpable energy in the room.”

These meetings soon became a full-fledged organization, which Juby named TAFKID. It was inspired by a letter that Rav Moshe Shapira ztz”l wrote to parents of a child with Down syndrome in which he said that each neshamah has a tafkid, a purpose. He explained that most neshamos are sent here to be metaken themselves, but the neshamos of special-needs children don’t need a tikun. Their tafkid is to uplift others. “This concept was empowering and resonated with me. It was the perfect name for an organization that gives the parents of special children chizuk, hope, and a voice.”

TAFKID helps parents navigate the complex system to obtain necessary services and supports for their children with disabilities. “Back in the 1990s, the community was by and large uninformed and intimidated by the school districts’ committees on special education,” Juby says. “I brought in a special education advocate to inform parents of their rights when dealing with the committee on special education.”

It opened a Pandora’s box. She was flooded with questions and requests for help. “You mean I can disagree with my child’s Individualized Educational Plan (IEP)? If the IEP and/or public school isn’t appropriate for my child, I can go to a hearing to seek funding for a private special education school?” people asked.

Juby trained to be a special-education advocate and began representing parents at IEP meetings and hearings. Today, Juby and her staff assist parents in understanding their rights, reading through children’s educational records, referring parents to evaluations, schools, and services, and representing parents at hearings against the New York City Department of Education on a daily basis.

TAFKID is located in New York, but they field calls from all over the country. “We strive to be an information clearinghouse, helping parents navigate through the sea of services,” Juby explains. TAFKID presently has a mailing list of 2,000 families, and there are many more parents who call with questions regarding their children.

TAFKID holds an annual Purim Festival, with an average attendance of 1,000 people. It’s an opportunity for families to come together, relax, and enjoy the day. The entire Lev Bais Yaakov High School has adopted the Purim Festival and volunteers to staff the event. Shlomie Dachs helps arrange the sound and entertainment and comes to sing each year, and many other well-known singers take the stage as well.

“We try to give families a great day and the opportunity to experience something fun they wouldn’t usually have access to,” Juby says. “I have tremendous hakaras hatov to our dedicated sponsors and volunteers who make the day possible. It is amazing to feel the simchah in the room.

“TAFKID is my tafkid,” says Juby. “It’s such an enormous chizuk for me and a zechus to meet so many special people and be able to make a difference. I daven that I should be a successful shaliach and have the siyata d’Shmaya to help others.”

The Sun Shines Brighter

Juby and her first husband amicably divorced after nine years of marriage. She remarried five years later. “I remember on our second date, my husband asked me about the impact special children have on a family. He has five children from his first marriage, and he was concerned about how it would all work out. I told him that all children need individual attention and parents have to make time for each child. I had a lot of help with Aaron and Chana, and I felt I’d be able to find a balance. Baruch Hashem, my stepchildren are amazing and we developed a close bond early on. I love each of them and our beautiful grandchildren.”

Tearfully, Juby remembers when Aaron was about to turn 13. There were people who said to her, “You’re not making a bar mitzvah for him, are you?”

It was very painful to hear. She responded that her son is Jewish and deserves to be accepted and honored as a part of Klal Yisrael. She made a beautiful bar mitzvah and invited everyone who had a part in Aaron’s life — rebbeim, teachers, doctors, therapists, friends, and all the TAFKID families. She also wrote a beautiful poem in honor of this milestone, which Shlomie Dachs sang to Aaron onstage to the tune of “Hamalach Hagoel.” There wasn’t a dry eye in the auditorium.

Juby and her husband Dov have two beautiful, healthy children together, 12-year-old Shira and eight-year-old Avraham Tzvi. The couple is very active in their Flatbush community. Just like Juby, Dov is outgoing, warm, kind, and giving. He’s the one you call with a crisis at 3 in the morning.  His simchas hachayim, ahavas Yisrael, and enthusiasm are contagious.

Their house is a revolving door of chesed. There’s a minyan in their house every Friday night, and they have many Shabbos guests. They make themselves available for anyone in need, even if it’s just by providing a shoulder to cry on. Dov also works to mediate many high-conflict divorces and deals with rabbanim and roshei yeshivah from across the country.

Aaron and Chana are now 28 and 26 and live at home with their family. They’re in wheelchairs, can speak only a few words, and require one-on-one support with dressing, feeding, and self-care, but are very aware and perceptive. “Aaron and Chana may have disabilities, but their personalities are definitely not disabled,” says Juby. Chana has a great sense of humor and is always smiling and laughing. Aaron loves music, and while he cannot speak, he sings on key and enjoys sitting near the piano and banging the keys.

“Aaron and Chana participate in all our family functions and are an integral part of our lives,” Juby says. “Dov’s children are close with them, as are our kids. They completely accept them and are very proud of them. When Shira had a birthday party in the house, she proudly brought all the girls to say hi to Aaron and Chana.” And Avraham Tzvi once told his mother, “We have mezuzahs on our doors and malachim downstairs.”

Her advice on coping: “There’s no simple recipe for it. It took years of working on myself to accept that many times we can’t understand why things happen, but if it’s what Hashem wants, then it’s meant to be, and Hashem is with us through the nisayon, carrying us all the way. Within every nisayon are so many nissim. We just have to be attuned to recognize them.”

When asked what she’s learned from being Aaron and Chana’s mother, Juby replies, “When watching a speeding train, the Kotzker Rebbe ztz”l said that being on a fast train is not always ideal. When the train moves too fast, you miss out on seeing the passing scenery. As parents of children with special needs, we’ve been given the opportunity to notice every facet of development. We don’t just smell the roses — we study the petals. This has also helped me recognize and appreciate all the nissim inherent in typical development as I watch my other children and grandchildren grow.”

To Juby, challenges and obstacles aren’t stop signs; they’re opportunities to build her faith, inner strength, and courage to serve Hashem, and uncover the greatness that lies within.

(Originally featured in Family First, Issue 642)