Life’s Unspoken Bargains: What it’s Really Like Raising a Special-Needs Child by Anonymous

Life’s Unspoken Bargains: What it’s Really Like Raising a Special-Needs Child by Anonymous

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

Photo courtesy of Flickr.com user Scott Akerman

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11 comments

  1. What a profound way to put it. I especially like how you pointed out that even the waitress who isn’t living up to our expectations is disabled in some way.

    I can’t imagine ever condemning the parent of a child with special needs. What a chutzpah. I would even venture to say that people who feel that they can judge or condemn are *really* the ones who are disabled.

    Thank you for your eloquent expression of the challenges you face.

  2. I also am a mom of a special needs kid. I deeply relate to the writer’s description of emotions we go through. This poem brought tears to my eyes. So many people don’t understand (B”H!!) what we parents of special needs kids go through. We don’t expect you to know what it’s like, actually we hope you never do. But please skip the judgement and censure. “Don’t judge another until you walk in his shoes”. And skip the pity also- be my friend if you find me worthy of your friendship for who I am, not for what my life’s situation is. I still have a lot to offer beyond my child’s challenges and differences.

  3. Rivki, not that I like it at all – but I am going to speak up in defense of people who mistakenly condemn the parents of a child with special needs.

    It is so easy to “tsk tsk” when you see an adult being harsh to an innocent child! We don’t always stop to see the bigger picture.

    That’s what Chana Jenny’s website is for…

  4. I am the mother of a special needs little girl who is about to turn three. And it’s not easy by any means. It’s hard work, it’s exhausting, exasperating, and painful. It’s also beautiful, magnificent, and more heartwarming than one could ever imagine.

    I know that I have screamed at my daughter when I was at the end of my rope. But it wasn’t any different than me screaming at any of my other kids. My other kids also break my expectations sometimes. They act chutzpadik, they fight with each other, and they don’t listen to me. And that makes me upset, and I discipline them. Honestly, if my special needs daughter does any of those things, I will discipline her as well. I will not have her turned into a pity case. “Oh, nebuch, she doesn’t understand.” When she hits her brothers, she gets disciplined in a way that befits her abilities.

    I really, truly take offense at the idea that parents get frustrated because their kid “broke the deal” while the parents are bound to keep their end. I would hope parents have more understanding and acceptance of their child than some random waitress! And if the waitress really had no choice but to take the call (emergency) I would wholeheartedly forgive her and wish her the best. I would imagine parents would have the same sentiments for their kids!

    I understand that there is more chance for frustration when dealing with a kid with special needs than a typical kid. But to put it this way- that the reason for frustration is that the child is breaking their end of the deal?? This is shocking me. It’s because of less sleep, more responsibilities, and dealing with irrational people (insurance, Board of Education.) All those factors cause lots of frustration and I explode at all my kids equally. And at anyone else that happens to be nearby. 😉

  5. How beautifully it is explained in the poem, and how true it is that we all have expectations of our children.

  6. This is so powerful, thank you for sharing.
    It’s interesting isn’t it how parents who walk with a physically disabled child get a sad smile from strangers or a polite offer to help. But when you see someone’s mentally- ill child acting wild or irresponsible most people will simply wonder “what’s wrong with his parents. Don’t they teach him anything? He is so out of control it’s terrible!”
    People with a mental illness are also ill. Their parents also need support and helpful offers and sympathy. They do not need your look of annoyance, disgust or advice about what you should be doing for the child.

  7. it says “six comments” but I only see four
    anyone else having this problem?

  8. The author of the poem asked me to post this response for her:

    You take offense at the sentiments expressed – but your child is only three years old. My child is more than ten times that age. I am still taking care of him like I did when he was three, in some ways. My husband and I are aging – yet this child/man will never take care of us, no matter how frail or elderly we become. I sincerely wish you well and I hope that your child grows up to be healthy and independent and can even give you a helping hand some day. But please don’t jump to conclusions about how you would feel if you were in my shoes, how forgiving and understanding you would be. Yes, I guess you might say I am taking offense to your taking offense. It is just not fair of you. Wait until you chas v’shalom have a child in his or her 30s who still won’t shower regularly, and then let’s talk again. You might not be so clear on this issue then.

  9. Hello: How can I get reprint permission and publish this poem, ‘life’s unspoken bargains’ in a future issue of my magazine, Down Syndrome Amongst Us?
    Kindly respond asap.
    Gratefully,
    Sarah Sander
    Editor – Down Syndrome Amongst Us magazine

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