Summary: With the bris over, real life with Rafael begins. Tzipora continues to grapple with her conviction to live with – and understand – emunah and bitachon. A jarring incident at a secular support group helps her realize that she should not judge the way others process grief, just as she doesn’t want others to judge her. Financial matters also come to the fore. While Rafael receives free once-a-week physical therapy from Baltimore City, the family faces mounting co-pay bills for services covered by private insurance. Maryland state law did not yet recognize the needs of families with children with disabilities, and in the Jewish community, too, there was little acknowledgment of or help for disabilities. The Fragers consider moving away from Baltimore.
Life finally settled into some semblance of normalcy. My schedule, as well as that of my toddler daughter, now revolved around Rafael’s therapy sessions. I did not go back to college to finish the BA I was working on. (I had planned to become a high school history and English teacher.) I also stopped teaching limudei kodesh at Bais Yaakov and various Hebrew schools. Instead, I attended three 90-minute physical therapy sessions per week at Mt. Washington Pediatric Hospital. That was in addition to the hour of physical therapy he received from the City once a week in our home. Each physical therapist gave me homework to do with Rafael, in hopes that he would meet the first year’s physical milestones in a timely fashion.
I was so involved with Rafael’s physical therapy and with our daughter’s emotional, social, and educational development that I did not pay attention to how much all this was costing. My husband did, though, and upon the advice of his parents, Yehuda began to explore other cities that would provide more resources for Rafael. He was finishing an MS in computer science from Johns Hopkins, and believed he could obtain a higher salaried position in New York or Los Angeles and, thereby, be able to afford all the extra resources and services our son needed and would need in the future.
I thought otherwise. I believed a supportive extended family environment, where there was acceptance, respite help, and familiarity was more important. So our dilemma boiled down to: What is more important: affordable services or a supportive environment for the mother?
* * *
It was 1980, a time of transition regarding public attitudes and services for children with disabilities. Prior to Rafael’s birth, the majority of Down syndrome children were institutionalized; very few families raised a child born with a disability entirely at home. Not only was there much shame on the part of the parents for having such a child but the general public felt uncomfortable even seeing such a child. It was also believed that these children could not contribute effectively to society.
Interestingly, it was the children and adults residing in the institutions who proved that they could contribute. Their caregivers began to notice that they retained knowledge and figured out effective interpersonal skills at their group residence. Soon, influenced by the civil rights movement of the 1960s, advocates for vulnerable populations appeared on the scene and established movements for civil rights for the developmentally delayed and mentally ill populations.
Rafael benefited from the new social conscience, as many states developed user-friendly programs. In Baltimore, services for babies diagnosed at birth or soon after evolved into what the social services call “wraparound” services. This is the concept that the baby lives with the parents, and the parents facilitate the services with outside providers.
Although this was a good idea theoretically, in a practical sense it created great financial hardship for middle class families, which included most frum families. This is still true today. Poor families who qualified for medical assistance, called Medicaid in Maryland, could get many hours of physical therapy and speech therapy at the best institutions, like Kennedy-Krieger and Mt. Washington Pediatric Hospital, and it was all completely covered. We, on the other hand, had to depend on our insurance company to pay for his wraparound services. We soon discovered that our insurance did not cover all the therapies we used and that we also had to cope with the deductibles, co-pays, and limits for services.*
Of course, there was no question about getting the therapies for Rafael; we knew they were essential. Dr. Caplan as well as other medical professionals had told us so. And we were typical of frum families, who are conscientious about researching their child’s disability and complying with recommendations. The one free hour of physical therapy we received from Baltimore City was a good start, but not enough. We decided to supplement it with physical therapy at Mt. Washington Pediatric Hospital. Our aim was to strengthen Rafael’s good muscle tone, which would help him develop more consistently
By the way, the reason we got that one free hour was because it was considered “educational,” not medical. A federal law passed in 1974 stipulates that children with disabilities have to be given an appropriate public education. So, if a child has a cognitive or physical disability that could cause an educational problem down the road, that child is entitled to begin his or her education from birth. Physical therapy helps children with Down syndrome achieve mobility earlier than they otherwise might. And mobility – moving around and exploring their environment – is considered important for cognitive development, i.e., “education.”
My goal in mentioning all this is so that people will understand what families are up against. Overburdened with the countless hours of therapy sessions, driving to the sessions, and working the “system,” they may need help with basic housekeeping duties. They need good insurance and enough money to pay up-front for services as well as for co-pays and deductibles. The financial strain often forces families to face a painful decision: What is more important, this child or the other children? Most families cope uncomplainingly with their burden; they deserve the empathy and rachamim of members of the community and its leaders.
* * *
As I was grappling with the issue of staying in Baltimore or leaving – whether because of lack of resources or the lack of income to pay for them – I continued to struggle to accept Rafael’s diagnosis of Down syndrome and to integrate it into my life. Rafael’s birth was the beginning of my journey to learn to care less about, ignore – perhaps even understand – the insensitive comments and gossiping behind our back that I knew were going on. I was also learning to disengage from well-meaning people who gave their opinions and unsolicited advice, mostly dealing with their own concerns – ones they would have if they were in my situation but that I did not necessarily feel were problems. (I have not concluded this journey, but I am getting much stronger and firmer in this area.)
I very much wanted to be with my family, my Bais Yaakov teachers, my Rav; my obstetrician, and Dr. Caplan. I could not fathom a better environment in which to raise Rafael. Some incidents solidified my feelings that my family and I needed to be in Baltimore. One that sticks in my mind happened a few months after Rafael’s birth, I attended an NCSY concert. During intermission I saw Dr. Aviva Weisbord, and my conversation with her influenced my already strong belief in daas Torah. (It was a big kindness on Aviva’s part to listen to me.) I told Aviva about the doctors in Knoxville and their opinion that Yehuda and I should not have more children because of our track record. (We had lost our first baby through miscarriage and then had a baby diagnosed with Down syndrome. In their ignorance, they added that, being Jewish, we would probably have a baby with Tay-Sachs!)
At the time of these doctors’ statements, I was able to be strong in my emunah and bitachon in Hashem, but as time wore on, I realized I was conflicted. I also flippantly stated that – should I get pregnant again – I would not have an amniocentesis, because even if the results were bad, I could not abort. Aviva told me that I should not say I would not do the amniocentesis without speaking to a Rav. She stated that the rabbanim are very well versed in all issues of pregnancy, illnesses, and raising children.
This was invaluable advice, and I followed up on it when I became pregnant with my third child, Mordechai Shmuel. We called Harav Weinberg, zt”l, and inquired if I should have an amniocentesis. Rav Weinberg felt that was important for someone with my anxiety to have the test and find out that all was well with the baby. The worry I was experiencing was not good for the unborn baby. We asked what would happen if we found out this baby had an issue. Rav Weinberg stated, “We will cross that bridge if it happens.”
I still think about this conversation when I am anxious about an issue that is really up to Hashem. I think about the chochma of daas Torah, which is the combination of understanding human behavior (especially the behavior and nature of the person the Rav is talking to), psychological and emotional concepts, common sense (which is not so common to the average person or to one who is experiencing the problem), and putting the Torah into daily practice. This is one of the reasons we as Jews have been able to flourish in this world.
* * *
Another incident that made an impression on me occurred when Rafael was three months old. It was a Thursday, the end of February, 1980, and Taanis Esther. It had snowed overnight. I awoke to a floppy, low muscle-toned Rafael. I anxiously called Dr. Caplan’s office and got the answering service. I left a message that something horrible had happened to Rafael. Dr. Caplan immediately called back and discussed the symptoms. I said, “Dr. Caplan, Rafael lost his good muscle tone. He is floppy, like a rag doll. Oh no, now Rafael is really going to be retarded!” Dr. Caplan asked me why I was saying this. I replied, “The nurses in Knoxville told me that Rafael’s saving grace was that he had good muscle tone. They said that meant he was not going to be as retarded as other babies diagnosed with Down syndrome.” Dr. Caplan told me to come to the office immediately.
As soon as I arrived with Rafael and my toddler daughter, I was taken back to an examining room. Dr. Caplan examined Rafael and then said that Rafael had a cold or virus. “If you or I had Rafael’s symptoms we would feel like a rag doll. Our muscle tone would be floppy, too.”
I sat down and started to cry. “Oh, Dr. Caplan, how am I going to do this? What is going to be with Rafael”?
Dr. Caplan replied in a beautiful manner, “Mrs. Frager, I am not a prophet, so I cannot predict what will be in the future. I can tell you how your child is doing now healthwise. I can identify psychological concerns and refer you to a professional, but I cannot tell you what the future will bring.”
I anxiously asked, “How can I live this way?” And Dr. Caplan answered, “We know that you have a beautiful, healthy, intelligent daughter. Neither I nor you can predict her future. We take it day by day and put our trust in G-d.” This conversation did wonders in repairing my day-to-day emunah and bitachon in Hashem. Since that time, many years have passed, and I have unfortunately experienced, and know of, other issues that I have had to live day by day. In these instances, too, I put my faith in G-d in order to function effectively. I have always believed that Hashem sent me the right doctor, because Dr. Caplan spoke to me where I was – not where he was. That helped me so much in determining how my family and I were going to live a “normal” life.
* * *
Meanwhile, we continued to weigh the pros and cons of staying in Baltimore versus moving elsewhere. In Baltimore, I had an excellent support system with my parents; my sister and brother-in-law, Rabbi and Rebbetzin Peretz Dinovitz (who had just returned from living in Israel); Rabbi Benjamin Dinovitz, z”l and, ybl”c, his Rebbetzin Gitty Dinovitz; Rabbi Steinberg, z”l; Harav and Rebbetzin Yosef Rottenberg; Rebbetzin Shenker, a”h (may her soul rest in peace); Harav Weinberg, z”l, and his Rebbetzin, a”h; my three cousins, Faye Klupt, Cindy Woff, and Malka Finkelstein; my Aunt Ida and Aunt Gertie, a”h; and my two closest friends from Bais Yaakov school days, Debby Eisenberg and Robin Schwartz.
My close friends, sister, and cousins let me talk through a lot of my emotional conflicts without making me feel like was transgressing the Torah. They did not judge my reactions and were just present, listening. The difficulty was coming to the realization that I had what I needed in Baltimore – but Rafael and Yehuda did not.
I finally agreed to move to Elizabeth, New Jersey, after Yehuda accepted a position in New York. We chose Elizabeth because there were very good resources for Rafael in a neighboring town. It was a state program that provided services four days a week for three hours. During those three hours, there was individual physical therapy, parents learning the physical therapy while the PT was there, circle time, speech therapy, where the babies were encouraged to make sounds, the speech therapist teaching the parents the speech therapy routine so it could be done at home, and bonding with other parents.
Our Baltimore friends made a wonderful tzaischem leshalom (farewell) and gave us a picture of a beautiful beach sunset, exactly the kind of scene I enjoy looking at. We moved to Elizabeth, New Jersey, on May 10, 1980. I had a heavy heart.
Next installment: The struggle of becoming a part of a new community and spending most of my time in the Infant and Toddler program for children diagnosed with a disability
© 2013 Tzipora C. Frager
* The new ACA, known as ObamaCare, is said to have changed these limiting provisions in regular insurance policies. However, due to the many glitches that ObamaCare has experienced, there is no data yet to document if there has in fact been a decrease in this financial obligation.
