Life's Unspoken Bargains: What It's Really Like Raising a Special-Needs Child

By: Rishe Deitsch

From: Jewish Mom

we all have basic, unspoken expectations of others
we give things to them and we expect things back

that is the nature of any relationship

we expect things of our spouses
of our parents
of our children
of employees and employers
of the people who serve us in stores or restaurants
in banks and post offices

when it comes to our children, we have unspoken expectations, too
we love them unconditionally but have expectations nevertheless

for example, Chana expects her daughter Sarale, now just a few months old, to eventually become toilet trained, become independent, be a mentsch

someone Chana can be proud of – even lean on some day

this is why Chana can so happily care for the totally dependent
Sarale now, as a baby — because she assumes it is temporary

it’s all unspoken
Sarale never signed a contract or shook on it, but it is a strong
expectation on Chana’s part and Chana will feel betrayed if Sarale
doesn’t fulfill any part of the unspoken bargain

even though it is not through any fault of her own!

still, Chana will feel as if
they had a deal and Sarale -or was it God? – broke the deal

so that is why you sometimes see impatience, bitterness, anger and
disappointment in the parents of handicapped children
and we are quick to condemn those mothers — they are “not nice,” we
say, they have “no sympathy”

and even “can you believe I once saw her act really mean” to the child

fact is, those parents are left holding the bag
they are left holding up their part of the unspoken deal, while their
child has broken his part
and they will be left in this position for the rest of their lives

unless a miracle happens

the handicapped child, now a handicapped adult, through no fault of
his own, broke the deal they had when he was born

he stayed a baby

that wasn’t the plan, that wasn’t the deal, and now those parents
can’t get out of their
part of the bargain

they still have to care for him, years after all his friends who kept
the bargain are on their own
they love their child
but
they are in pain

the handicapped child has his share of pain too
but so do the parents

think about how angry you become when the waitress who took your order
in the restaurant makes a 20 minute private call while you wait for
your food

she did it because she is desperate or disabled in some way, perhaps temporarily
but you are angry and disappointed anyway… the waitress didn’t keep to her part of the unspoken deal between you
and now your evening is not going as planned

this is the way some parents of a handicapped child feel
except it’s not one evening
their entire lives are not going as planned
and they carry the added burden of feeling guilty for the feelings they have, feelings which are taboo for parents: disappointment, resentment

if you are blessed that all your children are on their way to a healthy independence
may I suggest
you stop imagining how much better you would do than the parents of the handicapped child
how much more compassionate you would be
don’t give them the poem about winding up in Holland instead of Italy
just thank Hashem you are not in their shoes
and support them
yes, support them
or, at the very least, stop condemning them

and pray that everyone in your life keeps to their unspoken bargains