אל הנער הזה התפללתי - For This Child I Prayed
אל הנער הזה התפללתי
(שמואל פרק א פסוק כז)
Every parent has a vision of how their child will be when they are born. The excitement and divine experience of holding a “piece of G-d” in your hands and hearing the nurse proclaim “you have a perfectly healthy baby” are beyond words.
Often as Orthodox parents we focus on all of the spiritual challenges of raising a child today. What type of Torah education will he receive? What type of recreational activities will be encouraged? However we often take for granted that the baby will develop into a perfectly healthy child.
I still will never forget the shock to my system when I heard that my son was diagnosed as being autistic. At the time, over twenty years ago, Autism was a mystery to the medical field. The doctor, with all the good intentions, advised us to place the child in a institution - in order to save our marriage and our other children.
The burden of having to raise a child with special needs in Israel as newly arrived Olim was quite a challenge.
Many thoughts raced through our heads. Is this a punishment from Above? Is this child a result of something my spouse or I did? Is this diagnosis a result of something this child had done in a previous gilgul and now was coming back to fix? We racked our brains with dozens of hypothetical scenarios of why are done was autistic.
Or - is there a hidden treasure in this diagnosis? Something we were supposed to develop within ourselves through caring for this child? We chose to focus on the latter, to see the diagnosis as an opportunity for personal growth. We were determined to go through this as a family. However we had no idea of how many challenges and obstacles we would face in this endeavor.
Our son had a tremendous sleeping disorder, somehow lacking the ability to differentiate between אור וחושך, night and day. He would break open all the eggs looking for a chicken inside. He would enter the toilet for a swim. Our son preferred to live on a level of ‘before the sin,’ undressing himself in public places.
Often he would take himself on Tiyulim to the Arab-controlled area of Hevron where we lived and was well know to all the security forces in the area. In later years, our son developed self-injurious behaviors like biting himself and banging his head into the floor.
Our first challenge was to work through the tremendous bureaucracy of the government offices. Bituach Leumi, kupat cholim, misrad hachinuch, misrad harevacha just to name a few. Hours and days to get recognition and benefits for our son.
The second challenge was to find the proper treatment for our son. We knew that early intervention was crucial for the best prognosis. We tried many conventional medicines accompanied by alternative treatments as well. Risperdone and Zyprexa for aggressive behaviors. Decapeptyl shots (Lupron) for inappropriate sexual behavior. We ran weekly to therapeutic horseback riding, hydrotherapy, Bicom bioresonance therapy to help heal his dysfunction immune system, Hyperbaric oxygen therapy to help regenerate brain cells, Cranio-sacral therapy for swallowing disorder, Medical marijuana to control seizures. The list was endless.
In addition, we traveled to America to consult with experts. We traveled to Chicago to a clinic specializing in biochemical and metabolic imbalances. We visited the Option Institute in Massachusetts for two weeks to learn how to interact with our son, connect to his world and eventually help him to connect to ours.
Over the course of his many treatments, various issues and halachic/hashkafic questions arose:
Marital challenges: It is known that the divorce rate of couples with children with special needs is extremely high. Can a normal marital relationship really survive in such circumstances - with a child sleeping in the parent’s bed, waking up regularly in the middle of the night, needing the comfort of being in close touch and range?
Spiritual challenges: how do I balance my own learning and davening schedule? Regarding spiritual goals I had set for myself, do I put them on hold to take care of this child? It is known that early intervention helps in engaging the child and mainstreaming. At what point does one say that my spiritual needs come first versus my child’s need of being healed? Does one daven with a minyan or give up the hidur of tefillah b’tzibur to be home to help with the child?
One of the greatest challenges was how to deal with our son’s bar mitzva. Usually visiting the tefillin factory and ordering the tefillin is a big part of preparing for a child’s bar mitzva. Can this child put on tefillin? Is he capable of safeguarding the tefillin with the proper kedusha and tahara, with the proper bodily cleanliness? What type of celebration do you make? Do you expose your child’s disabilities to other family members and friends by getting called up to the Torah? Is he even allowed to say a bracha with Hashem’s name? Do you invite guests to come knowing that there is a chance that he will be closed off and not capable of performing at his bar mitzva? These were just some of the questions we struggled with.
What happens when your child cannot keep Shabbat? How to have him be mechalel Shabbat in front of other siblings? If he needs to listen to music or watch on his iPad to keep him calm, how do you explain this to the other siblings? Does my son really fall into the category of a shoteh who is not mechuyav b’mitzvot?
As he got older - and the realization set in that there is very little possibly of him ever getting married - we then needed to deal with question of how one then deals with the sexual tensions? We initially gave medication that suppressed his sexual drive but then destroyed his endocrine system, causing stunted growth, osteoporosis and pre-diabetes. Does one alternately teach his child to release himself and reduce the aggression and violence knowing at the same time the spiritual damage this does to one’s Neshama?
The expenses of raising a child with special needs - at what point is one supposed to or even allowed to take tzedaka? From whom is it appropriate to take tzedaka? Only from family members or from communal funds as well? How many jobs and the pressure that ensues is one obligated to undertake to provide various therapies which have the possibility of improving the quality of the child’s life?
The once-a-year family vacation to Eilat or to the North - does one include the child with special needs, knowing that it will hamper the activities for the other children? If one chooses to leave him back, what message is one giving him? To his siblings? The struggle to find proper respite care for him so that you can care for your own needs also arises. These are just some of the dilemmas that parents of children with special needs find themselves dealing with on a daily basis.
I wanted to share the method that was probably the most therapeutic both for our child and for us. I believe that the story that this method stems from can also be useful for parenting children in many different challenging situations, whether it be teenagers going off the derech or following a derech different from that of their parents:
The story is told by Rebbe Nachman of Breslov of the Turkey Prince. Once the king’s son went mad. He thought he was a turkey. He felt compelled to sit under the table without any clothes on, pulling at bits of bread and bones like a turkey. None of the doctors could do anything to help him or cure him, and they gave up in despair. The king was very sad...
Until a Wise Man came and said, “I can cure him.”
What did the Wise Man do? He took off all of his clothes and sat down naked under the table next to the king’s son, and also pulled at crumbs and bones.
The Prince asked him “who are you and what are you doing here?” “And what are you doing here?” he replied. “I am a turkey” said the Prince. “Well I am also a turkey,” said the Wise Man. The two of them sat there together like this for some time, until they were used to one another. Then the Wise Man gave a sign and they threw them shirts. The Wise Man- turkey said to the king’s son, “Do you think a turkey can’t wear a shirt? You can wear a shirt and still be a turkey.” The two of them put on shirts. After a while he gave another sign and they threw them some trousers. Again the Wise Man said, “Do you think if you wear trousers you can’t be a turkey?” They put on the trousers. One by one they put on the rest of their clothes in the same way. Afterwards, the Wise Man gave a sign and they put down human food from the table. The Wise Man said to the Prince, “Do you think if you eat good food you can’t be a turkey anymore? You can eat this food and still be a turkey.” They ate. Then he said to him, “Do you think a turkey has to sit under the table? You can be a turkey and sit up at the table.” This was how the Wise Man dealt with the Prince, until in the end he cured him completely. (As written in Under the Table by Avraham Greenbaum.)
The advise of the Wise Man inspired us to use the Option method of intervention for our son. Instead of viewing our son as sick and incurable, we used the approach of joining him in his autistic world. Without judgement, we began to “sit under the table” with him. By joining him flapping his hands, lining things up, humming melodies together, we showed our son that he can do these things and still connect with us and the world around him. I still will never forget the day he took my finger and pointed at a picture he liked in his book. Slowly our son began to join our world, wear clothing, eat human food and sit at the table with us. We used this method and way of approaching our son for many years to follow.
There is a story of Rav Chaim Shmulevitz (the Mirer Rosh Yeshiva) who during the Yom Kippur war, gathered his students to daven and awaken Rachmei Shamayim on behalf of Am Yisrael and the soldiers. Strangely enough, he decided to pray at Yad Avshalom, located in the Kidron Valley at the foot of Har HaZatim. His students were puzzled as to why he chose this particular location pray at out of all the holy sites in Israel. Rav Chaim opened his Tanach and read to his students Dovid HaMelech’s eulogy on behalf of his wayward son Avshalom.
״ויעל על עליית השער ויבך וכה אמר בלכתו ׳ בני אבשלום, בני בני אבשלום. מי יתן מותי תחתך אבשלום בני בני...ויזעק המלך קול גדול ׳בני אבשלום, אבשלום בני בני״
The Gemara in Sotah explains that David referred to his son Avshalom eight times as his son בני. Seven times to take him out of Gehinnom and once to bring him to Gan Eden. Then the Rosh Yeshiva continued, “Master of the World. It is true that we are a little rebellious but matter what, we are still your children. So we are begging you כרחם אב על בנים כן תרחם השם עלינו. Like a father never stops having compassion upon his son, so too may You have mercy upon us and save us from our enemies."
Regarding ״בנים אתם להשם אלוקיכם״ the Gemara in Kiddushin writes in the name of Rebbe Meir, אף על פי שחטא ישראל הוא (Even though he sins, he is Israel). In baseball, "three strikes and you are out" but in Judaism a son is always a son.
There is a classic teaching of Rebbe Nachman of Breslov - אזמרה- which stresses the importance of finding the good points in every person and focusing on their נקודה טובה. It is so easy to focus on our disabilities. However it is essential for us to focus on the abilities of our child and to take the healthy part of our child and build him up, to help him develop and grow. עוד מעט ואין רשע, התבוננת על מקומו ואיננו. Just like spiritually this applies, so to it applies physically to the human body. We focus on the healthy part of our son and build from that point to enable him to integrate into our family.
“אל הנער הזה התפללתי” Despite all the challenges, we are grateful to Hashem for the opportunity to learn acceptance, tolerance, compassion by seeing the good in our child with special needs and in all of our children.