Latest update: November 27th, 2013
As an education writer for the nonprofit organization, Kars4Kids, and as someone who made Aliyah from Pittsburgh 34 years ago, I decided to write about the challenges of Aliyah from western countries with school age children. See the previous piece in this series, Fully Absorbed, Coming Through to the Other Side.
As a teen, Randi Lipkin spent three consecutive summers working at HASC, a camp for Jewish children with special needs. Randi’s husband Michael spent his nineteenth summer as a counselor there, and the couple both worked at HASC one summer after they were married, never knowing that someday, they would have a special needs child of their own.
The Lipkin family made Aliyah in August of 2004, with four children from Edison, New Jersey. After they made Aliyah, Randi discovered she was pregnant with Yisrael, who has Down syndrome.
Michael serves as senior editor of financial articles at a local company, Seeking Alpha. Randi is an occupational therapist who works at a “Gan Safa,” a Beit Shemesh nursery school for children with developmental language delays. The Lipkins live in Beit Shemesh.
V: Tell me a bit about your children and their adjustment to your Aliyah.
Michael: We had 4 children when made Aliyah. They were 19, 17, 14, and 3 when we moved. Our oldest, one year post-seminary, was our big Zionist and would have moved here even if we hadn’t. Her adjustment was very smooth. She married a year and half later and is now living in our neighborhood with her husband and 3 children.
Our next oldest was borderline interested in moving. As she was entering her senior year in a Flatbush Beit Yaakov the year we made Aliyah, we decided it was best for her to finish high school there while boarding with Randi’s sister who lived nearby. She subsequently came here for seminary, married soon after, and is living in Bet Shemesh with her husband and 3 children.
Our older son had the toughest adjustment. Even though he wanted to move he had a difficult time adjusting to dorm life at Maarava high school. However, he is now our most integrated child having married an Israeli girl and is currently serving his country.
Our youngest at the time adapted very well because of her young age and smarts.
V: How old were you and Randi when Randi became pregnant with Yisrael?
Michael: I was 47 and Randi was 45. We had just had our first grandson and our second daughter was married during Randi’s pregnancy.
V: How did you and Randi feel about the pregnancy? How was the level of obstetric care here compared to the care Randi received in the States during previous pregnancies?
Michael: I was ecstatic, very excited, but nervous for her. Getting pregnant at that age was nervous-making, and of course, we worried about Down syndrome.
Randi: The overall care here was fine, but I found it very weird that you develop a relationship with a doctor and then he has absolutely nothing to do with your delivery. The experience was totally different than in the states. In certain ways the doctors seemed very laidback and in other ways hyper-nervous.
I had gestational diabetes as I’d had before in my previous pregnancies. The doctor transferred my entire case to an obstetrician that handles gestational diabetes and I at one point said to the doctor, “Can we listen to the heartbeat?”
They were too focused on the diabetes. There was far less connection to me as an expectant mother compared to what I had experienced in the States. Of course, I’d had tremendous relationships with my doctors in the States, because I’d known them for 25 years. It’s just not what you have here.
Since I was having an elective, planned C-section, we paid for a private doctor instead of showing up at the hospital and just getting whoever was on duty that day and we felt very comfortable with that decision.
V: I know you gave Yisrael the middle name “Simcha” because you wanted him to always know he brought simcha, joy, into your lives. Was that immediate? Or did it take some adjusting to the idea?
Michael: It was immediate. Though we had no specific foreknowledge that Yisrael had Down syndrome, given our ages and some anonamolies on a couple of the ultrasounds performed during the pregnancy, the idea is not something that would have surprised us. Even though reality can be different than expectations I can honestly say that there was not a moment where I felt I needed to “adjust”.
V: How did your children feel about having a brother with Down syndrome? What is it like for your other children still at home in terms of bringing friends over to the house? How are they with Yisrael?
Michael: I think the combination of our open and positive reminiscing of our time at HASC and our positive attitude from the beginning helped the other children quickly adapt to Yisrael’s special nature. Our youngest was only 6 when Yisrael was born and we didn’t feel the need to tell her immediately. We just wanted to let her enjoy having a new baby brother. When we did tell her a few months later she too, accepted it quite easily.
She has a friend also with a brother with Down Syndrome who is a couple of years older than Yisrael. He’s quite adorable and she quickly related her brother to him. Being very bright, she also wanted to understand the chromosomal abnormality that created Yisrael’s condition.
V: Describe if you will, what happened when Yisrael was born, how you were apprised that he has Down syndrome? How might the staff have better handled this issue?
Michael: Randi had a scheduled C-section given her age and the fact she had had previous complications. Randi was prepped for surgery with a local anesthetic. She remained awake, if not woozy. I was seated safely next to Randi’s head behind a divider that prevented me from seeing her guts on display as I nervously waited to hear that first cry.
After a few minutes of jostling and suctioning sounds the doctor held up my new son, still attached to his umbilical cord. He looked pretty gross, as do most babies who are covered with blood and guts, and yet beautiful at the same time.
Right away I noticed that they appeared to be doing a little more with him than the typical Apgar testing—his was 9/9! Specifically, the pediatrician seemed to be checking his muscle tone by flopping him around like a rag doll. At the same time the nurse quietly said to me, “Did your wife have a skira [routine, detailed ultrasound]?”
Well I didn’t have to be Sherlock Holmes to figure out what was going on. When I went over to look at the baby, the doctor asked me, pointing to his beautiful almond-shaped eyes, “Do your other children look like this?”
Being the nice guy I am I didn’t say out loud what I was thinking, which was, “No, Moron. My other kids don’t have Down syndrome!”
I immediately looked at his palm and sure enough he had a simian crease, an almost certain marker for Down syndrome.
Even though I knew the answer, I asked this Russian pediatrician if he thought that my son had Down syndrome. His reply was, “Well he’s not going to be the smartest kid in the class.”
I went over to Randi and whispered to her, “He has Down’s.”
She said, “Okay,” as if she had known all along.
As soon as he was cleaned up I asked to hold him. The moment I held him, I felt my prior expectations shift to accommodate this new reality. That seemed to surprise the staff! Before being whisked off to recovery, Randi gave our son a kiss and told him she loved him.
They really didn’t know what to do with us. It seems that their standard protocol is to say as little as possible so as not to upset the parents. But we weren’t upset. We had discussed this possibility. We loved him just as we had loved each of our newborn children. We were fine, we were going to be fine, and we wanted to make sure everyone knew that from day one.
V: How old is Yisrael? How do you feel about the level of care that Yisrael receives in Israel? Are you satisfied?
Randi: He is now 6. He has a minor cardiac issue that just needs monitoring—it will never affect his daily life. There was a cardiologist on the case. He had an echo and a second echo before being released. They were very on top of things. We were lucky. There was no NICU stay and his bris [circumcision] was on time. He was assigned a regular pediatrician.
From a therapeutic perspective, here in Israel, things were just amazing, very fast-paced. A lot of special needs programs close in August so they were in a hurry to get him started. At 6 weeks old he had already started at Shalva, actually on the late side, some of the other kids were just 2 weeks old. I never spent a shekel there. The support system Yisrael received as an infant there was unbelievable.
He had physical therapy, massage therapy, speech therapy, sensory integration therapy. He spent time in the Snoezelen room. Each week it was three out of four of those therapies, the staff rotates it so everyone gets what they need. The therapists make a connection to each kid.
Shalva is for kids 0-2 years old. They have the Me & My Mommy early intervention program which supports the children and the mothers, and they don’t exclude dads. They offer support groups for the parents and there’s a social worker on staff. They do their best to let you know what services are available in this country so you can get additional support.
Shalva is only once a week so they want you to be able to get all the support you need. They want to know where to refer you when your child turns two. It’s a lifeline. As brand new parents of a Down syndrome child, you don’t know what services are available and it’s not something you can Google. Being at Shalva means you have the support of the other mothers who are at different places in their experiences and the staff is always there mingling and helping. It’s an amazing place for the time when the child is newborn: when everything is new.
V: What therapies does he have? What help do you receive?
Randi: At 8 weeks Yisrael started receiving therapy from the Kupa (HMO). The whole rights thing: I don’t know if it’s only the Meuchedet plan, but I do not pay any co-pay for Yisrael’s therapies. Therapy throughout the first eight years is free. It’s got to be at least 26 shekels [around $7] for treatment but we don’t pay a thing.
Yisrael has had amazing therapists throughout the years. As a therapist and as a mom I have learned so much from them. He received from the Kupa all his therapies at Mercaz Rakefet in Beit Shemesh and they provide all kinds of therapies: speech, physiotherapy, occupational . . . all sorts of therapies. He even attends a therapeutic sports chug (afterschool program) that he’ll attend for the entire year.
The teacher for the sports chug has a degree from Wingate and specializes in the field. The sports chug is considered emotional therapy and therefore it’s all covered. Mercaz Rakefet has been my go-to place because they run a great program. They teach the kids how to lose, how to win, how to play with other children. When he completes the sports chug, he’ll be able to participate in the regular mainstream sports programs at the local matnas [community center]!
V: How do you see Yisrael’s future in Israel as he develops and grows into adulthood?
Randi: I don’t know where he’s going for Kita Alef [first grade]. I haven’t explored it going that far forward. But he goes into first grade next year. Educationally and academically I don’t know where he’ll be but I stand behind the idea that he is just getting the best possible education available here or in America. It’s Torani [National Religious].
The Irya Gan [city-sponsored nursery school] here in Beit Shemesh comes under the umbrella of Chinuch Meuchad [special education]. The class is small, just 8 kids with 3 staff members. The kids are not mainstreamed per say, but Yisrael does get some mainstreaming at the Gan [nursery] next door.
V: What would you tell prospective Olim who are parents of children with Down’s syndrome?
Randi: I can only speak towards this portion of his life in terms of recommending Israel versus America. I take things one year at a time. I would definitely recommend things from a therapeutic level here. I do not feel he could have gotten anything near what he is getting here in New Jersey and we would have gone bankrupt!
Still things are expensive for us because we do go private for certain therapies for Yisrael because there are certain therapists who have that much more expertise in the field, particularly with kids with Down’s syndrome and they do not work in the Kupa [HMO]. But still—it doesn’t come close to what we would have paid for similar therapies in the States.
V: I think it notable that both of you were involved in HASC and that Randi is an OT. Do you see a spiritual lesson in that in terms of being the “right” parents for Yisrael Simcha? Or is that a terrible suggestion—that if you volunteer with special kids, you might end up with one of your own?
Randi: Certainly that’s a thought given our backgrounds and the ease with which we accepted Yisrael into our hearts and lives. However, also given our experience, we know of too many cases where this was not the case, for example where children with Down’s syndrome were left behind in the hospital, abandoned. It’s never smart to second guess God’s “intentions.”
I think we were pre-prepared and nothing was a shock. Very little was a surprise. We had experience—we were 90% ready for a Down syndrome child. On a behavioral level we were prepared to raise him and handle him. We have perfected our parenting styles to be the right parents for him.
Being more rules-oriented in order to help Yisrael develop the discipline that he will need in his life has been an effort. He behaves on the level of a 3-4 year-old. But we still make demands on him.
V: What about age wise? Is it hard to keep up with a little one at this stage in your life? Especially one with special needs?
Michael: Yisrael keeps me young. Randi does feel more tired, less energetic.
Randi: My friends all have empty nests and I don’t really have that: my own time. I rest. I get him from Gan [nursery school]. We do something almost every afternoon. Yisrael doesn’t go to bed until 9:30 at night.
I laugh because I’m out there in the afternoons with the 25-35 year-old moms. I guess he’s keeping me young and I don’t know it.
Feel free to write me: Varda at kars4kids dot org and I will share your stories here in this space, anonymous or attributed as you prefer.
About the Author: Blogger and mother of 12, Varda Meyers Epstein is a third-generation Pittsburgher who made aliyah at age 18 and never looked back. A proud settler who lives in the biblical Judean heartland, Varda serves as the communications writer for the nonprofit car donation program Kars4Kids, a Guidestar silver medal charity.The author's opinion does not necessarily reflect the opinion of The Jewish Press.
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