Sunday, February 5, 2012

How to cope with the things people say ?

I am on Hopeful Parents talking about the difficulty of dealing with the things people say in the days post diagnosis here

If you hate clicking links ( like I do :-) ) here is the post

How to Cope with the things people say?

One of the hardest things for mums and dads of auties is  what I call  the “coming out”.

Of disclosing to the world that your child has autism

The breezy question of “Hows the little one”?

To which you have till this day, always replied “doing great”

Do you now just state baldly “ well actually he has autism now !”

When we first found out, I told just my very close friends ( those with who had discussed with me the all consuming  “does he/doesn’t he” of the months before getting an official diagnosis of he-does) .

 I told them these close friends by email and I also told them that I did not want to talk about it at all.

Many people said kind things "Must be hard.. how can I help ?"

But the words of other people ( even when  well meaning  ) hurt so deeply

"Did you see that Larry king show" ( where the mother was taking about killing herself?) 

"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know )

"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

Will you be taking him to Vegas to play the slots?

Just curious.. if you could do it again what would you do different …You must really regret vaccinating your child( ouch !!)

Do you think its because you were so stressed when you were pregnant?”( what a comfort, knowing that it may have been my fault !!) 

“These are chosen children of God!” or –“this is just a penitence for past sin” or “god has only given this to you because you are strong”( wasn’t feeling so lucky to be chosen )

And the worst "Soon they will be able to screen for autism in utero and we can prevent autism "

How it hurt!

But the truth is that most people were  just looking for something to say.

Often ,in fact,  they  were trying to read my attitude to see what would be  right thing to say.  

Should they should sympathize or offer something uplifting?

Sometimes, of course,  they were not thinking at all

But, almost never, was anyone looking to hurt

The intent was usually kind

All my life I have been deeply in love with words.

So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and threatened  to turn the light switch off !

But being loved so deeply by R - my child silent for so long - taught me to look beyond words 

To the intention behind the words.

And it makes all the difference to how I feel about what is actually said

The second thing that has really helped, has been falling back in love with my life and realizing once more that we have the best kid in the universe.

.And being able to truthfully answer" he's great ". A cue to starting conversations that focus on the positive and the possible 

The third thing that has made a difference has been to teach myself to be a little less sensitive 

The other day an elderly aunt commenting on R’s talking asks” will he always talk like this or will he improve any more”

My mum, on hearing this, quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what she will sound will come out of her next.. let it roll off your back “

And today its easy to do !


Unknown said...

What a beautifully written article. You certainly have a way of weaving your words. Coming to terms with other peoples' words has always been hard to me, but like you I finally realized that a lot of time people just don't know what to say in regards to my alopecia. I usually try to laugh off what they say, thinking that they are trying to offer comfort but I find that human beings often have a hard time with knowing how exactly to offer support with the spoken word. Sometimes a hug is just better or just letting them know they are there for you!

Floortime Lite Mama said...

thanks so much Lauren
DId not know about the alopecia and I am sending you a big cyber hug

lisa said...

As always, your words help me as well. These are all universal life truths, which I'm sure is your point :) You are such a special person and I'm honored to know you!

Floortime Lite Mama said...

xo xo xo Lisa

BabyWeightMyFatAss said...

Thank you for posting here so I didn't have to click over! lol.

The words of others/mostly family are the one's that hurt the most. Maybe not hurt, but frustrating for sure.

ggop said...

I get super annoyed at the kind religious misguided types who talk about me being given only as much as I can handle. I feel like retorting - really? You have a masters degree in Electrical Engineering from Stanford. And you are spouting such bullshit?

I should aspire to be graceful like you. :)

Lizbeth said...

You bring up a very good point--the intention of what the other person. I have often encountered people who just don't know what to say. They really want to help or offer a hand but they themselves are stuck on what to say without offending. To me, its all about what the other person is trying to convey.

Floortime Lite Mama said...

I know exactly what you mean.. it can really sting when we get those comments

Floortime Lite Mama said...

You are so right .Lack of tact is okay , lack of kindness is not

Floortime Lite Mama said...

It always amazes me that our family members who are supposed to know us the most can also hurt us the most

Yuji said...

Kudos to you for working to be less sensitive. It is really hard to hear some of the comments, but I think in many cases the intentions are good. We can all be angry about the comments, or we can try to educate. You are helping to educate, while hopefully keeping your blood pressure lower as well.

Þorgerður said...

... the life gives you no more than you can handle pisses me seriously off... then again theory of mind is often lacking in the general population ;)

Floortime Lite Mama said...

Thanks so much Yuji for the lovely words

Floortime Lite Mama said...

OMG Porgerour - u made me smile - u r so right about the theory of mind about gen pop sometimes

Kris said...

What a wonderful perspective. The hardest comments for me to deal with have always been the ones where they give advice. The absolute worst was when our neighbor made Alex look her in the eye before she would give him Halloween candy during trick or treat. Meanwhile he was busy keeping an eye on her giant German Shepherd. Seemed like a typical reaction to me. I wanted to throttle her or say "Do you make all the kids look you in the eye first or just the autistic ones?" I admit I have never really gotten over that one but I will try to keep it in perspective!! Love this post!!

Unknown said...

I LOVED this post. I agree 100% that most people are trying to offer comfort, and they just don't understand what they sound like. After all, no one knows what it's like to parent a child with autism until they've done it.

Floortime Lite Mama said...

Exactly Tessa
Thanks so much for reading

Floortime Lite Mama said...

OMG my blood was boiling on reading about your neighbor's "help"

Kris - that one would be very hard to get over

Deb said...

Oh yes, I know what you mean. One of the biggest lessons I have learned is about being too sensitive. I have always been very "prickly." After my son was diagnosed I even felt bothered by a friend who got me an autism puzzle piece pretty pin from Autism Speaks. Even that was jarring to me, because I was still in the acceptance phase. I have had to remind myself again and again that most people truly do want to help. That is a very good point that we have to look at the intent, beyond just the words.

Floortime Lite Mama said...

I so know what you mean .. I am sure your friend meant well but it's hard to accept these kind of gestures when we are processing our emotions

danette said...

Great post! I agree, it helps to take a step back and try to see what the intent was... when I feel like someone means well it is easier to focus on the intent more than the words. Also, considering that as parents we go through different emotions at different times, something that might rub us the wrong way at one time may sound more encouraging at another time.

Martianne said...

Sorry. Do not want to ask you to click a link since you dislike doing so, but did want to tell you that I offered a much belated thanks to you at the bottom of my post today, copied here to save you the click (the hyperlink back to your site won't transfer in the copy though):

Thanks: Back in October when I asked for reader opinions, five folks took the time to comment. Although I have taken their comments to heart, trying to focus more of my posts on sharing about faith, special needs/sensory stuff, resources and practicality with joy, I have not yet thanked those readers here on the blog. So, I am doing so now Heidi, Dandelion Wishes, Mama Pickles, K- floortime lite mama
and The girl who painted trees. I appreciate your comments and will continue to try to post ideas and activities that you can enjoy and learn from.

Floortime Lite Mama said...

"Also, considering that as parents we go through different emotions at different times, something that might rub us the wrong way at one time may sound more encouraging at another time"
This is such a fantastic point

Floortime Lite Mama said...

you are sooooooo welcome
Thanks so much Martianne

Li said...

You make a great point about behaviors that are pathologized because a kid has a diagnosis. Really unfair. Egg and TP the house next year.

Suzanne said...

Wow---what a great list. I love the bottom rung of the pity ladder part!

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