Parenting Our Special Children
I offer a unique perspective in the world of parenting. My long-awaited,
extremely precious only son was almost lost to us in the first hours of his
life, and is now growing up to be sweet and lovable but also physically,
medically, and cognitively handicapped. I sometimes remark that after giving me
twelve years of no responsibility for children, Hashem has now given me the
responsibilities of a mother of twelve.
What I can attest is that having a child is nothing to take for
granted. Certainly, having a healthy child is something for which every parent so
blessed should be eternally grateful.
Soon after we realized that my son was not going to be a “typical”
child, a secular Israeli doctor in Hadassah
Ein
Kerem
Hospital taught me an
important lesson: Every child can be compared to a ruler. It would be
irrelevant to take measurements with a metric ruler and an imperial ruler, and deem
one inaccurate because it calculated a smaller number; it is similarly
irrelevant to compare children. Every child is his or her own ruler, and should
only be measured against him- or herself.
This holds true for all children, but all the more so for children
we label as “special.”
Many of us have heard of the practice of the Chofetz Chaim ztz”l
to stand for the lofty neshamah of a special-needs child. As a people, however,
our history is not so favorable when it comes to relating to these children. Very
often, fear of social stigma combined with poor educational opportunities have put
special children at a disadvantage in frum society. Baruch Hashem, we
have moved past the times when such children were sequestered and never spoken
about, and our educational system has made tremendous strides in providing for
them. There is, however, still a long way to go.
The first child with an impairment mentioned in the Torah is
Chushim, the son of Dan. He was deaf; the Gemara (Sotah 13a) informs us that
even so, Chushim had the zeal and courage to kill Eisav when he interfered with
the burial of Yaakov Avinu. Though Dan was the only shevet to have but one
child, it nevertheless grew to be one of the largest shevatim. The Midrash
in Behaaloscha teaches that since Shevet Dan traveled last, it was the
“gatherer of the camps” — the one to collect what had been left behind, and to give
a feeling of safety to the stragglers.
It is clear that Chushim was raised in an environment where he
felt included and empowered. His father reaped much nachas from this
only son, who passed on a legacy of compassion and security.
In my previous column, I quoted a rav who remarked that “children
were not given to us for nachas but for avodas Hashem.” Parents
of special-needs children should be acutely aware of the unique bond between a neshamah
and the body that it chooses for life in this world. Only a very heilige
neshamah opts to live in a compromised body. Knowing this gives impetus to
the parent — whom Hashem chose to bring this child into the world — to serve
Hashem through caring for this child.
Disabilities vary tremendously from mild to severe, and include physical,
cognitive, and emotional impairment. As disabilities vary, so do the challenges
of raising children affected by them. What all parents of impaired children share
is the need to parent in ways that do not fit into the typical “chinuch
shiur” guidelines. Looking at the recent baby development column so cutely presented
in this magazine, I wondered how many other mothers quickly skipped to the next
page, as I did, to spare themselves yet another stab of pain over milestones
that their child has not yet reached.
No child in this world ever exactly matches the profile of another;
that is the beauty of Hashem’s creation. No child’s wonderful middos or
misbehaviors will precisely mimic those of another. As our faces differ, so do
our ways and thoughts. To quote a well-known lecturer: “Every person is a one-time
phenomenon!” Every mother therefore needs great measures of binah yeseirah
to know how best to raise her child — even if he is a “normal” child.
When she is faced with challenges, she can look to abundant
literature as well as to many specialists and mechanchim, who, with siyata
d’Shmaya, can help her along the path. This is not the case for the mother
of a child whose problems don’t fit into the category of typical — or even
healthy — growing pains.
The parents of a disabled child must navigate a stormy sea of
doctors, therapists, medication, medical equipment, insurance, and more, with
no guidebook or compass. I personally treasure the connections I have with
other mothers of special-needs children. We are important information resources
to one another and can offer each other chizuk and comfort as no one
else can. There are also some Jewish organizations that are active in supporting
and educating parents of special-needs children.
At the end of the day, however, my child is my responsibility and
no one else knows his needs as I do. It is a tremendous achrayus to
shoulder, and sometimes these shoulders get quite tired.
I have mentioned in public speeches that the mother of a severely
handicapped child is herself handicapped as well. People might find this to be
a very shocking comment. My intent is to convey my reality — that I am
completely dependent on the assistance of others. It is so very paramount for
every mother to take time for herself and attend to her own needs, and all the
more so in the case of a mother whose job title could be joined with “nurse” or
“therapist.” It is often difficult to accept help and feel like a “chesed
case,” but it is important to know that a good mother can only fill this role if
she takes care of herself.
I would also like to stress how much these precious children give
to and inspire others. While parents and siblings will always be the ones most
impacted by a special child, every nuclear family is part of a greater extended-family
structure, and an even greater community structure. The special child, whether
directly or indirectly, can be a tremendous source of strength and inspiration
for everyone whom he or she encounters. Each special child is blessed with an
inner or outer chein that endears him to others, and can teach us
invaluable lessons of perseverance and fortitude.
In addition, it is a privilege to be able to help a child in any
area where he could not otherwise help himself. It is an opportunity to follow
in the footsteps of the Ribono shel Olam —to fulfill the mitzvah of v’halachta
bidrachav.
Mah Hu af atah: if not for Hashem’s everlasting
chesed, we would each be nothing more than a golem, unable to
move, see, hear, think, or feel. In our morning brachos, we healthy people
thank Hashem for seemingly insignificant details of our lives — “He opens the
eyes of the blind,” “He helps the bent-over stand up straight.” We tend to take
these gifts for granted; think how accurately these words would describe us if
not for all that Hashem has bestowed on us!
Who can be greater than the parent to whom Hashem says, “You are
like Me”?
Who can be greater than Klal Yisrael, who cry out to Hashem, “Look
at us”?
May Hashem continue to grant love, care, and strength to His precious
nation. May He provide all parents with the love, care, and strength necessary to
raise their children, and may we soon see all of Klal Yisrael running up the steps
to the Beis HaMikdash singing and dancing — following the lead of all these
precious children!
Parents of special-needs children should be acutely aware of the
unique bond between a neshamah and the body that it chooses for life in
this world
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