Monday, May 4, 2009

The things they say

Yesterday I bump into a friend after 3 years.

She is such a wonderful girl and we used to so enjoy hanging out but had slowly gone out of touch. We chit chat and catch up.

She touches upon some uncertain events that she has been dealing with. And how she has decided to go with the flow since things were so out of her control.

I laugh and tell her being an Autism Mama has turned me into a go-with-the-flow kind of person

I see her face change with the shock of what I said.

And I realise just how breezily I discuss R's Autism these days

It wasnt always like this.

I was very very sensitive - like a wound.

Every contact- no matter how well intentioned, hurt

To my close friends I wrote an email describing what we had just found out and asking for them to ignore me and pretend for my sake that they did not know what I had just told them.These good friends did just that

But the words of other people ( well meaning though they were ) 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 )

"Soon they will be able to screen for autism in utero " ( ooooh lovely)

And the worst

You must really regret vaccinating your child( I dont have a sarcastic quip for this one as this cuts so deep)

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

To emppathize.Offer some hope! Maybe a solution.

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 needed to go to sleep this instant or else horrific consequences would ensue !

But being loved so deeply by R - my child without words- has taught me to look beyond words

And so I listen patiently to this good hearted friend of mine who says things that would have wounded me so deeply 2 years ago

"I know there is the good autism and the bad autism .. does he have the good one ? she is going on "They cant attach - autistic kids cant"

She finally stops and says " Is he really bad ?"

"No", I smile back "he is the best"


aninont said...

Yes, I have a friend whom I met with this past weekend. She is nice of course and has kids exactly the same age as mine.Her two kids and my NT went for the circus and S and I were hanging out with her. I really did not want to be with her because I seem to have nothing to talk to anybody anymore.. I dont even want to talk about autism anymore.I have no inerests, I dont like books,movies,music, reading, cooking nothing that "normal" people like. just btw.. she tells me " I can understand what you are going through, Autism IS a lifelong chronic neurological condition...."

aninont said...

oh, another one, we are in the process of changing the agency providing care for S and I called up this woman and said "Hi, I am P, S's mom"
The intake coordinator replies" oh yes,the Indian autistic boy's mother"

Floortime Lite Mama said...

ugggh - Aninont that sucketh - the thing is that soon they stop mattiering - these thoughtless comments

All About the Bailey's said...

So true, so true...those comments deserve a punch sometimes. I know exactly what you mean. You are right, with time comments don't mean much, besides those other people take what they have for granted...and we see all the beauty in our children.

Chuck said...

You have expressed a depth of meanining in this post that transcends the limitations of mere words and yet imbues them with heightened beauty and grace. . .

Anonymous said...

I remember 2 years ago when we had my son's diagnosis of autism - my co-workers are probably more sensitive and sensible then most I guess; I was able once to explain to them and to myself that day, and utter this truth through my tears:''my son is perfect''. There was no way any label was going to change my adoration for the magnificent being he is. Those were the last tears I have shed for autism.

Lyndsey said...

I know exactly what you mean. So many of those comments and questions used to cut to the bone and I wanted to just reach out and slap the speaker. I know they didn't mean to be offensive or hurt me-- it's just one of those things in life I guess. I talk about it now so casually, and sometimes the people I'm talking to who don't know about it almost ignore that I said anything at all. I think I prefer it that way. ((((hugs)))) for the times you were hurt by words.

Julie said...

So nice that you can catch up. I know how you mean about how things that used to hurt so bad, are no big deal now. Though reading what you wrote brought it all back for me. I actually had a conversation with someone over the weekend and it brought to light some things that I've been ignoring/in denial about because it hurts to much to think of it. While the conversation was nice, I hate that I think more deeply about things after the fact. Ugh. Most of the time I choose to see the positive, because I HAVE to. Sorry.

robin said...

Just teared up after reading your post.

I look forward to these...and reading about R, you, and your life.

melody is slurping life said...

My thoughts are much like Chuck's. Thank you for continuing to share your insight.

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