Silence is Golden

“The real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment. “ ~Dorothy Nevill

Indeed!  I’ve often wondered what makes people say trite, inane clichés when someone else is going through a difficult time.  It’s something that has bothered me for a long time, and has been highlighted by my experience in raising a child with special needs.

Recently, I posted about locking horns with my kiddo and the need for those observing to remain silent.  And lately, I’ve read many posts from friends (mostly on Facebook) about insensitive comments people have made regarding their grieving process, all in the name of being “helpful” or “kind.”

I understand people want to connect, offer support, show they care, or be the shoulder to cry on when others are grieving; I think it’s an admirable part of the human condition. And on the flip side, the hurt that can come from someone’s “helpful” words (no matter how well-intended they were) can be a load to bear.

Since we’ve been navigating these waters for almost seven years now, I thought it was time for my “Top Ten” List of Thoughts That Should Have Been Left Unsaid.  (Yes, these have all actually been directed to me/us at one time or another.)

Drum roll, please…

10.  What’s wrong with your kiddo?

Nothing.  This comment implies that something isn’t the way it “should” be.  And, damn, I hate it when someone “shoulds” all over me – especially when the question is asked in front of other children.

Kids’ experiences are shaped by the adults around them, so paying attention to what words are spoken or what actions are used is tantamount to their perception of what is acceptable behavior.  And everyone is different.  (Now there’s a word I’m okay with!)  By asking this question of us in front of other kids, they learn to judge others who aren’t like them.  That’s called prejudice.

Rather than asking this, I wish people would comment on something positive about our awesome kiddo…like his fantastic baby blues, quick wit, or incredible vocabulary.  He’s wonderfully engaging (especially with adults), so asking something that builds a connection rather than causes separation would be a better way to start.

If I feel like it, I actually may choose to share a little bit about his history, how he functions, and what is involved in our daily lives.  But I need to trust you first.  That takes time and space, and I’m the one who needs to determine if and when that happens.

9.  What happened to him?

I don’t even know where to begin with this one.  Do you really want the full story – the complete blow-by-blow?  Seriously – he and I are both in medical studies because the nature of what happened to us was so unusual and quick that it baffled the doctors.  Based on medical science, neither of us should be here.  But I don’t put all of my eggs in that basket.  I know our survival was 49% medical advancements and 51% Divine Intervention.  And that’s a pretty damn personal piece of our story to share.

I really don’t mind answering the question; I just take pause to wonder if people really want to know the details when they ask.  It is a loaded question, with many layers of emotions wrapped within.  So if you ask, you’d better be prepared to give me the space to answer, and be interested in hearing the answer.

8.  Oh…he’s just now doing (fill in the blank)?  This is often followed by a comparison of when the speaker’s kiddo mastered that behavior.

Yes, he just did it for the very first time.  And I’m okay with that.  As a matter of fact, I’m probably cheering and yelling with glee, and giving him as many high-fives as he’ll take before I embarrass him.  Because when he was born, we were told he might not live very long if at all; and, if he did, the road would be steep, tough and unpredictable.

So every victory – no matter how small or insignificant to anyone else – is a big, damn deal in our house.  And we celebrate them, with full-out, crazy-mom, “squee”-type glee.  I don’t care how long it takes; I just want to see him succeed.

I’m not going to belittle your child for doing something that isn’t on the timeline I’d choose, or what I think would be expected.  Each one is so different and I’m tired of them being compared.  I’m glad if your kid is brilliant at what s/he does; so is mine.  Our definitions of that term just look different.

7.  Have you tried…(fill in the blank)?

Yes.  Almost without a doubt.  Truly, we have exhausted the resources here in the Grand Rapids area, and we still know more about our kiddo and how he functions than most of the specialists we have seen.

We have read the books, studies, research, seen the videos, contacted specialists, tried different medications, therapies, strategies and more.  And we still are.

I love that you’re trying to be helpful, but having to explain the years of appointments, therapies, medications and more isn’t a fun process to someone who makes a comment just from a minute or two of being with us.  I’d rather save that one for when it is needed.

(Disclaimer:  Those close to me – family, friends and colleagues – this one doesn’t apply to you.  If you know the details of our story, or have hugged me while I was having a rough day, then you can ignore this one altogether.  I love that you send me articles, book suggestions, info on different types of bodywork and more.  Please don’t stop.  I know you’re not trying to fix anything, and your focus is on supporting us.  Thank you for that!)

6.  You just need to be more consistent with your discipline.

You may as well scratch your nails on the chalkboard, because that’s how this one comes across.  My husband and I are intelligent, loving, well-studied parents who have put in, literally, hundreds of hours in therapies, studies, research, doctor’s appointments and more, all in the hopes of finding a better balance for all of us.

The fact that anyone would make such a comment without knowing kiddo’s history (or ours, for that matter) nor watching us day in and day out just blows my mind.

Do we lose our cool at times?  Absolutely.  Do we sometimes cave.  You bet.  (I know we’re not alone on this one.)  And, overall, we’re continuing to put one foot in front of the other, communicating with each other the best we can hold boundaries together.  We call it “Tag-Team Parenting” and I’m blessed to have such a great hubby to partner with.

We’ve tried (and are still trying) it all…rewards, more consequences, sticker charts, special prizes, less time doing favorite activities, and more…and it doesn’t work for our kiddo the way it does for one who is considered neruo-typical.

5.  Will he ever be normal?

Oh, how I hate that word (and usually mentally bitch-slap whomever uttered it.  Sorry; that’s just how I roll).  What the heck is normal, anyway?  Do you mean neuro-typical?  Now that’s a term I can talk about:  what would be considered the range of behavior (in a general sense) that one might be able to see among a group of similarly-aged children in a controlled environment.  Is my terminology vague enough for you yet?  Good, because that’s what the term “normal” feels like in our household.

It’s not helpful.  Quit putting it in your “go to” list.

And please don’t ever (ever) use the “R” word – retarded – around me.  I’ll have a full post on that later.  Consider this a heads-up.

4.  Oh, you must be such a patient person!

No, I’m not.  I just blogged about this the other day (check out “Locking Horns with the Minotaur”).  I like things to go the way I want them to happen, and in the timing I think is best.  Do you know how much of that I usually get when it comes to kiddo’s challenges?  Nada.  And I’m making peace with that.

But don’t mistake my silence as some grand surplus of patience.  It may be; I do have the capacity to choose to be patient.  And I can also be quite stubborn.  In the case with some of kiddo’s meltdowns, the thought I hang onto (told to me by our favorite therapist, Dr. B.) is, “I’m a whole lot more stubborn than you are, kiddo.  You’re not going to win this one.”

3.  Oh, that’s nothing.  Be glad you’re not dealing with…(fill in the blank with whatever other disease, ailment, situation, etc. that comes to mind.) OR the variant…Oh, that’s nothing.  You should hear what happened to so-and-so.

Thanks for minimizing the challenges we face by assuming that someone else is dealing with something worse than what we’re going through.  They may, indeed, be dealing with horrific circumstances that I wouldn’t wish for myself.  But that doesn’t mean that what we’re dealing with is “less than” someone else’s burdens.  We all carry our loads differently.

Our experiences with kiddo have put families in our path who have dealt with losing children, therapies we’re grateful our child doesn’t need, and other challenges that I honestly don’t know how they handle.  Except I do.  Because the parents I know they would do anything to take away the challenges, pain and suffering their kiddos are facing, just like we would.  And it doesn’t help to compare what we each deal with.  Period.

2.  Oh, my kid(s) went through a phase just like it.  Don’t worry – it will pass.

Really?  So you have a crystal ball that is giving you this information as a certainty?  Oh, thank goodness – here I was, feeling all sorry for myself that this was the way it was going to be.

I’ve said it once, and will probably have to say it again for a long time:  cerebral palsy is not a phase!  Got it?!  Good.  Moving on…

1.  God doesn’t give you more than you can handle.

Well, then I sure wish He’d quit recognizing what a capable spirit I am and trusting me with so doggone much!  I’m exhausted most of the time and I think He constantly gives me more than I can handle so I don’t try to walk this journey alone.  I wish I could take away the challenges our kiddo is facing, but it’s just not that simple.  And I know the growth I am experiencing through this whole process wouldn’t have unfolded the same way had He given us a different child.  By the way…I don’t want a different child.  I love this one.  Challenging though he may be, this kiddo is the biggest blessing we have ever experienced.

So, how about holding us up in prayer instead?  Instead of pity, why not send some awesome mojo, wishes for patience, heart-felt love and kind thoughts our way?

Better yet – how about offering to give us some respite?  The time for us to recharge and reconnect with each other away from kiddo is something we strive to do on a regular basis because we need it.  We’ve beaten incredible odds to have survived the NICU experience and be co-parenting a child with special needs and keep our marriage strong.  (Notice I didn’t just say “together”; we have a healthy, loving relationship.)  The odds against us are staggering (do the research; truly, the divorce rate for NICU/special needs families is astronomical).

Any of these options would do more to lift me/us up than the thought that somehow, this is what I/we deserved.

So there you have it.  My list of what not to say.  And there are lots of things to say.  I’ll be posting about those another time.  In the meantime, if you’re not sure what to say, then don’t.  Or say exactly that:  “Wow – I just don’t know what to say.”  Then offer your ear.  Chances are, the other person is the one who wants to talk anyway.