Growing Up Overnight

Motherhood alone is a huge adjustment. But when your first is “special,” the growing pains are exponentially greater. Mrs. A. Churi, for one, had no idea how rapidly or dramatically her life would change with the birth of her first child.

“I’m the youngest of four. There’s ten years between me and the sister before me. I grew up spoiled — whatever I wanted, I got. After I met and married my husband, my dream was to sit in my own house with a good book sipping a cup of coffee,” she chuckles. “Hashem gave me the opposite of comfort and it changed my outlook: Nothing is a given. We can’t assume we’ll get married or have children. And if we have kids, we can’t assume they’ll be healthy. Raising my now 16-year-old firstborn Yehudit — who has both pervasive developmental disorder (PDD) and attention deficit hyperactivity disorder (ADHD) — changed me entirely.”

Perhaps the most challenging part of Mrs. Churi’s foray into the special-needs world was that it took six long years before doctors could fully explain Yehudit’s symptoms and behavioral problems. “We were struggling in the dark,” Mrs. Churi relays. As a newborn, Yehudit had large ears, pronounced bone structure, and slightly shorter-than-usual fingers. Although something was clearly abnormal, Yehudit’s features alone weren’t enough to give the Churi family a diagnosis. In fact, it may have complicated things because, as Mrs. Churi explains, “usually kids with PDD look normal.”

As Yehudit aged, more problems surfaced: she didn’t focus her eyes often and began to walk late. But these developmental delays were nothing compared to Yehudit’s behavior — she was simply too wild for anyone to handle.

“At age two, she went through 11 educational settings,” Mrs. Churi says, revisiting the exasperation. “When she was close to age three, a special-ed preschool agreed to accept her and she blossomed there. At age four, we did a comprehensive evaluation. They sent us for blood tests, put two and two together, and said PDD.” At about age six, Yehudit was also diagnosed with ADHD.

From the start, Miriam Kornitzer knew that her unborn child might have problems. At her 20-week ultrasound, the doctors detected a heart defect, which is common with Down syndrome.

“Initially, I didn’t believe my son would be born with Down syndrome — after all, I was so young. Later, in the third semester, they saw other signs, but as many things as they pointed out, I just kept on davening and hoping against all odds that everything would be fine,” says Miriam, who was 21 at the time. “Family and friends kept encouraging me, saying ‘my friend was also told x, y and z, but it wasn’t true.’ It’s better that I didn’t know 100 percent because hope is what got me through the pregnancy, but knowing that there might be a problem definitely softened the blow.” As the doctors predicted, Miriam’s shanah rishonah baby, Yaakov, was born with Down syndrome.

“Yaakov had some serious medical issues, but I felt I could deal with them. I didn’t, however, know how to cope with the diagnosis of Down syndrome. That was something life-altering — it meant Yaakov would never have the life, future, and independence of other children,” Miriam reflects. “After he was born, I cried hard until I realized that children are not here for us, we are here for our children. Children are not there to glorify us, we must glorify them — and make them glorified before Hashem.” In terms of how fast her son’s arrival matured her, Miriam says simply: “I was 21 and then I was 40.”

Under the Radar

Although there’s not a wealth of data about the age of expectant mothers as it pertains to special-needs children, it’s relatively uncommon for first-time mothers to have a special-needs child. Consider the numbers from the Me and My Mommy program for special needs babies run by the Shalva organization in Jerusalem: only two of the 48 babies in this year’s program are firstborns and in 2014, just three of them were.

Generally speaking, many children with atypical needs are the youngest or toward the bottom of their family. This is certainly the case with Down syndrome (a disorder that has been heavily researched). Statistics show that a 22-year-old mother has a 1/1,500 chance of having a baby with Down syndrome, whereas a woman over 40 has a 1/100 chance, and a woman over 45 has a 1/20 chance.

When you’re looking at the numbers, it’s important to keep in mind that “although the incidence of Downs goes up with maternal age, more children with special needs actually have younger mothers — simply because more younger mothers are having babies,” says Goldie Marans, coordinator of social services in the Pediatric and Maternity Wing of Hadassah’s Ein Kerem Hospital, who has been working primarily with special needs for nearly 40 years.

In Ms. Marans’ experience, a large portion of special-needs children are born without any forewarning. Yet even when it comes as a surprise, young mothers today generally take the news more positively than in previous generations, notes Golda Turner, founder of the Beineinu organization for parents of special-needs children. “Thirty years ago, it wasn’t uncommon for families to give their ‘special’ children away. Today, there’s less of a stigma. Since there is more exposure to and acceptance of special needs overall, concrete information about what disorders are inherited and which aren’t, as well as many Jewish-run services to help with every facet of the child’s care, it’s much easier for a young mother to deal with the birth of a special child.”

Still, because such a small number of young, first-time moms have special-needs children, they often go through the nisayon without the support of their peer group. “Part of losing the dream of a healthy first child was losing my friends,” Debbie remembers. “I played along because that’s what you have to do, but I was in such a different place. They were busy dressing their babies up in gorgeous outfits while I was dealing with existential questions like the purpose of my son’s life.”

For Debbie, the day-to-day stuff was the hardest. “I felt like I was left behind,” she says. “There were so many little moments, like seeing my friends’ babies in shoes — shoes! My friends were mothers to big boys while mine was not yet crawling. Seeing everyone around you up to milestones you aren’t up to yet — despite the fact that chronologically, your child should be already. That part is always difficult, though it gets far easier with time, when our view of ourselves as mothers is not dependent on the child’s progress. I remember feeling like a car with the wheels stuck — all the cars from behind kept zooming ahead while my wheels turned and turned in place. I felt like I could never keep up.”

Challenges at Every Age and Stage

How do new parents cope with the news that their parenting journey will involve loving, feeding, diapering — as well as multiple therapists and possibly surgeries?

“A lot depends on the personality of the parents and the strength of their family system,” reflects Ms. Marans. “With ongoing family support, a mother will be able to stand on her own two feet.” By way of example, she describes a scene that happened a few years back when a young couple had a baby with Down syndrome. “Several hours after the birth, the grandmothers were both at the mother’s bedside. They coalesced around her. They gave her the message: ‘It’s hard. It’s really hard, and no one expected this to happen. But we’re in this together. This is our mission.’”

In her work for Beineinu, Mrs. Turner is privy to the many struggles of raising a special-needs child: sleep deprivation, exhaustion, frequent emergencies, hospital visits, the constant struggle with “the system,” and the effect on the other siblings. She also has first-hand experience: she’s the mother of Meir Efraim, a 30-year-old with cerebral palsy, and the grandmother of Yiddala, a firstborn boy with special needs. “Yiddala is severely disabled and medically fragile. There is no day and no night with him, as his care is around the clock. And when a nurse doesn’t show up, family needs to fill in.

“Yet, we know that Hashem does not make mistakes,” she asserts. “He’s the one Who, in His great wisdom, created this child with his package of issues and placed him in our family. When we accept our child or grandchild with special needs and invest in their care and chinuch, we’re sure to reap the long-term rewards.”

From afar, raising a child with special needs can look like a single challenge. But in reality, it’s an ongoing ever-changing nisayon with many hurdles, Debbie says. “When Shimon was a baby, we were dealing with colic and countless therapists and doctors and uncertainty and the attempts to find our footing in what was supposed to be our entrance into creating a ‘normal’ family. Eventually, the dust settled. But it wasn’t over.

“Then we were dealing with a young child who was getting laughed at in the streets, and was starting to understand and feel crushed. Then we watched Shimon’s self-confidence crumble because he couldn’t read.

“Now we’re dealing with the bar-mitzvah stage,” Debbie continues. “Every joyous occasion for us is always tinged with some sadness at what ‘should have been,’ even if we’re good at pretending that it isn’t bothering us. There are so many questions: What do I bring to the bar mitzvah that will be exciting for Shimon because he can’t just sit at that table for so long, but how do I do it so that he doesn’t feel stupid because he’s super-sensitive to that? And what to do about the part that everyone else seems to find so touching — how people love bar mitzvahs of children with special needs and flock because it’s just sooooo beautiful that it makes them cry — while this makes us cringe, because Shimon can pick up on those vibes and it hurts him. Next we’re going to tackle teenage-hood, which is a whole new ball game.”

Family Impact

On the lifelong odyssey called parenting special firstborns, siblings often arrive. If they’re very close in age to their older brother or sister, their life may not be so different in the beginning, but eventually their lives become “special” too.

In Debbie’s family, Shimon was followed by five sisters, one of whom — Rachel — is just a year apart in age. “At first we kept Shimon in the role of big brother who protected Rachel from all the kids on the block,” says Debbie. “But we couldn’t fool her for very long.

“It’s different when the special baby is the youngest who we all love together. But Shimon is the big brother and he’s almost bar mitzvah now. In 11-year-old Rachel’s eyes, he’s a bochur and he’s not cute, and sometimes he’s embarrassing. It’s hard for me to see my girls losing their respect for Shimon. I have to work on helping them respect him since they’re old enough to see how much he’s delayed but not mature enough to love him for who he is. But they do have a strong connection, and if he’s taunted, they rise to the occasion.”

Much as Debbie’s girls don’t want to be Shimon, they did — and still do — get jealous of him at times. “People tend to give more attention to special kids. I have a neighbor who gives pekalach to his kids and to my son each week. Don’t think Rachel doesn’t notice — I see her eyes pop out.”

Of course the most valuable commodity that children compete over is their parents’ attention, and in this regard Debbie’s special bochur is also frequently “in the lead.” As she relays, “In almost every family, the little ones get a much longer bedtime. They need help putting on PJs and brushing teeth. They get story time. In our house, Shimon is babied more, along with the younger kids. I can’t pretend that my daughter is five years old, and it wouldn’t be to her benefit if I did, even though she gets less of me.”

Balancing out that equation, however, is Debbie’s personal commitment to not overburden Rachel with her older brother’s care. “It would be the easiest thing in the world for me to fall back on her because we need the help, but I try not to ask.”

From her view as the mother of two toddlers, Miriam sees her younger son Yisrael learning lessons from his big brother precisely because Yaakov has Down’s. “Yaakov is more social and more eager to show Mommy how good he is. He’s teaching my younger son social skills. On the other hand, when he sees Yisrael working hard to learn to walk, it motivates him. They pull each other to the next milestone.”

In contrast, once Mrs. Churi had a second child, big sis Yehudit’s difficulties — as seen through the eyes of her younger sister — made life harder. When they tried to play in a park, Yehudit rummaged through public garbage cans; at Savta’s house, Yehudit emptied out the drawers and clothing closets. The only solution was to take each child out separately, even if it was less frequently.

“Efrat is only one year younger than Yehudit and she’s a very responsible type,” notes Mrs. Churi, who is now a mother of eight. “The second child born after a special child has mercy on his parents. I’ve read a lot about their perfectionism and their conscience. They think ‘my parents received this kind of a child first, so I’d better be excellent and perfect, help them, and give them nachas.’ ”

Two of Mrs. Churi’s daughters needed professional guidance to help them process their feelings of hatred and jealousy toward their big sister, who sometimes hits and yells at them. “I took them to art therapy to let everything out,” says Mrs. Churi. “I did it so they could grow up mentally healthy, and baruch Hashem, I really saw a difference — even in the daughter who is more closed. They were doing arts and crafts, which they love, and the healing conversations came through the back door as they created their projects.”

Two and a half years ago, when Yehudit was 14, she went to live in a group home with round-the-clock care because she was doing things that endangered herself and others. Now that she only comes home for Shabbos once a month, the other siblings have a more relaxed home atmosphere.

A Special Couple

Raising a special-needs child can also rattle a marriage, especially when the couple is still so young. That said, “hardship does not automatically create problems in a marriage — it only highlights the places that should be worked on,” asserts Debbie. “So if there were areas in one’s life where the marriage kind of ‘coasted’ before, it will no longer be able to do that once something as all-encompassing as caring for a special child takes over.

“As far as my own experience,” Debbie continues, “despite this sounding all fluffy, the truth is that it only brought my husband and me closer. I think that our relationship —all of 12 months old — was still somewhat artificial, and you can’t be very artificial when you’re dealing with life and death questions (we first thought Shimon had a type of metabolic disease, possibly with low life expectancy). And since our parents were far away, there’s was no one else who really understood what was going on. I also think being newlyweds and still more careful with each other’s feelings was only to our benefit.”

In spite of the continual hurdles and the many rough days, these women feel only love for the children who turned them into mothers and who will always remain in first place in their family. And they continue to harbor hope for what their kids may eventually accomplish.

“My daughter Rachel overheard me telling Shimon that when he’s big and knows how to read really well, he can go to yeshivah. Rachel thoughtfully said that Shimon is like Rabi Akiva, who went to learn alef-beis at age 40. I don’t know what prompted her to say that but I was so touched,” says Debbie. “Because it’s true… I may not expect Shimon to be like Rabi Akiva in that he’ll become the next gadol hador, but Rabi Akiva also had a tough time learning to read. He was 40 and illiterate and not at an age when it was easy, and yet he went ahead and did it. Age didn’t matter. I can’t explain what hearing Rachel’s comment did for me. It was a reminder that ‘difficult’ or ‘unusual’ or ‘slow’ does not mean ‘impossible.’ ”

BREAKING THE NEWS

When a “special” baby is born, who tells the parents? And how do they go about it? “A diagnosis always comes from the doctor,” explains Goldie Marans, coordinator of Social Services in the Pediatric and Maternity Wing at Hadassah’s Ein Kerem Hospital. “I’m there for support. But the first thing we say, as a team, is mazel tov.”

After that, the doctor raises potential concerns and when needed, more tests are taken. Once there’s a diagnosis, it’s time for another meeting with the family. “We almost always ask if there is anyone else the couple wants to include in the discussion — like parents, siblings, or a pediatrician.” If relatives are already at the mother’s side, Ms. Marans will diplomatically inquire if the new mother wants these family members included or prefers that they wait outside.

What she and her staff won’t do, however, is keep one of the parents in the dark. “We’ve had husbands who want to protect their wives who are weak after birth and who ask us not to tell her. We say, ‘We’re telling her. Do you want to be there?’ ”

Whoever isn’t present at the meeting will either see for themselves or need to be told. That’s another bridge for these fresh parents to cross. “How do you go from being the one who receives news to being the one who gives the news?” questions Ms. Marans. “These hours are very critical and the family situation affects a lot. Does the mother get along with her mother-in-law? Do the spouses support each other in times of difficulty? Have they been married for one year or ten? Is the new mother always in a race with her sister — and the sister already has three perfect babies? What kind of special needs does the baby have? Kids with Down syndrome tend to be very loving, others may be less socially responsive.” 

With so many delicate factors to consider, why is there a rush to inform the new parents when they’re still in the delivery room? “Our experience, based on years of research, is that if there is any suspicion that the baby is not typical, it needs to be checked right away,” says Ms. Marans. “And there’s no right time to give someone bad news.”

A GUIDE FOR THOSE ON THE SIDELINES

Your sister/relative/friend/neighbor just had a special newborn. What’s the right — and wrong — thing to say? How can you help her best?

Everyone agrees to begin with “mazel tov!” but the script gets fuzzy after that. Beineinu once ran an informal study, asking parents for the best and worst comments they heard after their special-needs child was born. Surprisingly, three of the comments Beineinu received appeared on both lists, proving that it’s hard to say exactly the right thing in this delicate situation.

As someone who has been on both sides, Debbie advises speaking from the heart: “Sometimes I want to be the one who says the wise words and that comes across as fake. If my thoughts are really about the mother, she’ll feel it no matter what I say.”

Beyond that, Ms. Marans suggests: “Say good morning. Ask what she needs. Ask her if she needs an hour to herself while you watch the baby. Make yourself available. This is a baby who needs hugs and kisses — and the parents also need hugs and kisses. Most people don’t know how to express their needs, so ask them what you can do. The parents still want to be invited for meals on Shabbos and Yom Tov, and they want others to celebrate with them when their baby reaches a milestone at the pace HaKadosh Baruch Hu decides on.”

It’s easy for grandparents, parents, and relatives to get overly involved when an 18- or 19-year-old just became a new mother to a special-needs child. “They often think the new mother can’t handle such a big job — after all, she was just a seminary girl who they told to go to sleep the night before a big test. But remember,” says Debbie, “Hashem gave her that child.”

You should also limit — or entirely eliminate — all unsolicited advice. “Everyone has amazing things that their cousin’s husband’s mother tried,” Debbie says. “But these suggestions, as well as the endless questions, are exhausting to the new mother. Remember how overwhelming it is to just become a new mother, let alone to learn about motherhood and specials needs at the same time.”

(Originally featured in Family First, Issue 485)