The blog of photographer and musician, Kim Ayres

DS Protocol?

We were in the supermarket yesterday when we saw a mother with 2 kids – one was about 18 months old and sitting in the trolley, while the other was about 4 or 5 and was running about being helpful.

The wee tot in the trolley was achingly beautiful. She also had Down’s Syndrome.

It’s something I don’t see very often; indeed with reportedly 80% to 90% of pregnancies carrying children with DS being terminated these days, I guess it’s something I’ll see even less of in the future.

It’s an odd thing, but after more than 8½ years, I still have no idea what the protocol is, if there is one at all.

What I wanted to do was go over, pick the wee lass up and give her a big hug. Of course this would clearly be unacceptable and I would most likely be beaten to a pulp by an irate mother before being arrested for attempted kidnapping.

Even so, a part of me still wanted to say hello and mention that we too had a child with DS and that she had a beautiful daughter, but that seemed wrong too. One of the things I always felt uncomfortable with after Meg was born, was the idea that I had somehow joined a “club” (see Lada Owner’s Club for more details), so if I’d been prepared to tear up my membership card then, it would be more than a little hypocritical to try and use it now.

So rather than say anything and risk embarrassing the mother, or ourselves, we just surreptitiously watched the child as she laughed when her bigger sister came up to the trolley, and pretended to be interested in the items on the shelf every time the mother glanced in our direction.


quinn said...

AT my last job..I was drawn to a gentleman pushihg a cart with his little son in the basekt and I noticed that this cute little blonde haired/blue eyes cutie had down syndrome. He was happily munching a cracker and making a real good mess with it. I said to him ...something like .ooh i bet that is pretty yummy....the dad, to my surprise... sounded a bit cranky and said oh he is a real trouble maker this guy.

Then I asked the dad if I could help and we went on and on about the things he needed to order etc. we were quite a long time with the details and even a cell phone home to double check measurements. All the while this little fellow was seated quietly and happily nibbling and watching the goings on in the busy busy store.

After we were all done I said something like ...what a super good boy you have been ,, all this time waiting and not being a bother. *I really was impressed as most kids..any kids.. do not have patience for such delays.....* The dad didn't seem to like my comments and I still do not really know why.

What would he have prefered I do, Ignore his child ? not comment.?? If that had been a child that did not have DS and had been so well behaved I know I would have said the very same things.

I saw a cute little boy..not a cute little boy with down syndrome.. sometimes I think it would be easier for everyone else if the parents could relax a bit too.

Stella said...

I know Kim, it's a tough one. Have to say when Sarah was small I was quite happy to belong to the club and loved when people approached me - beats the stares anyway.

In your situation usually I would admire the child if I am seen watching, you know "she's lovely, how old is she?" etc. I may or may not mention Sarah just depends on the vibes.

I still don't mind when people approach me when I'm out with Sarah and I have found that often the "starers" have a family member with DS. What really gets up my nose is the "oh they're so lovable" "they're so happy" "they ALL love music" - for F***** sake, what utter shite! Of course I'm always tempted to reply "who? girls?" tee hee

Kim Ayres said...

Quinn - maybe the guy was just having an off day, maybe he'd had a face full of people staring, commenting, muttering and being incredibly insensitive and so was ready to read more into what you were saying than you were.

It's an easy thing to say that it would be easier for everyone else if the parents could relax a bit, but when you know that the world can be a harsh place for those who don't conform to some idealised norm, then you can get very defensive.

I know from my own experiences, that when I realised that my daughter had DS, within about an hour of her birth, all I wanted to do was hold her close and tell the world to fuck off.

Stella hit the nail on the head when she writes about getting so annoyed with people who begin sentences "they're so...". What this does is lump people into a group and assume shared charactersitics, thereby denying their individuality.

If I hear one more person say "they're such loving children" I am quite likely to throttle them. Yes Meg is a loving child, but then so is my son, who does not have DS, and there are times that Meg is not particularly loving and is an absolute pain in the arse - just like any other child.

But as parents of children with DS, we are constantly faced with people pigeon-holing our children and failing to accept them as unique individuals. Society in general does not accept difference very well, and the attitude in the medical world where pregnancies are concerned is little short of Eugenics.

It does not come out of concern for the children or the parents, it comes out of fear and ignorance of difference and of the unknown.

While I fully appreciate you were able to see this wee boy as a child, first and foremost, many people do not - all they see is the DS, which they fear because of ignorance and prejudice.

As parents, we can sometimes become over sensitive to how people are reacting to our children, but given the attitudes we frequently have to face, I don't think it's that surprising.

Kim Ayres said...

Stella - perhaps what draws me to want to speak is that common understanding of what the parents need to put up with.

quinn said...

Absolutely...I agree whole heartedly.

Although I do not know alot about DS, I used to volunteer at a local school years ago for DS kids. Perhaps that was where I learned the best things. I do know that IS where I learned to see each person for who they were and not see the disability. ( One of my childhood pals is a girl with severe brain injury from birth. she is 4 years older than I am chronologically but she is really functioning still at about 14/15 year old.)(( Growing up though she was my little playmate and good friend, it didn't matter any to me)).

What I don't think I was able to convey in my comment ( I am not that great at getting my point across..but let me try a bit more)...
This fellow didn't seem to acknowlege anything possitive mentioned re: his child. He was very negatively speaking about his son to me even though I thought the boy was being really patient and good. His comments and tone in response to things I said....well....It was like he wanted me to see fault in his child....and I did not.

I so get what you are saying any one of us can be having a really bad day with our kids in tow. Even with what you relate about how others may have been toward him other times, even if that were the case....I don't know ..maybe it is the mom in me ..but I think I would have been more inclined to say ..yeah, he is being a really good boy etc.etc.

I have some friends that have children with disabilites of different kinds....You know what is the most amazing thing and it's not new, people have been saying it for years and it is soooo true...If people just take a minute to get to know the person inside, all the rest pales in just don't see the dissabilities. OH sure you know they are there.....many people can't get past seeing a wheelchair, or seeing someone walk differently, or someone with a portwine stain birthmark etc.etc...but if they would really honestly get to know that person would blow there mind how quickly those things are not in the forefront.

( k I am rambling..but who knows maybe my ramble will get one person to take the time to make some new friends that they might have otherwise walked on past.)

Dr Maroon said...

You did right.

It's an extension of the pregnant woman thing. Pregnant women sometimes feel they are public property just because they are pregnant, which is pretty unexeceptional when you think about it, all our mothers were.

The baby's parents are probably exhausted dealing with every reaction you can imagine and just want to buy some omo and chinese wings to watch the film on four.

Whenever babies and toddlers stare at me esp in supermarket checkout queues,(which they do) I always wink and make that clicking sound normally reservrd for attracting the attention of dogs, they love it.
Their parents though sometimes look at me as if to say
"If only it was that easy mate."

jotcr2 said...

I think it is tricky too, in that you don't want to start talking about the kid to the parents, while the kid is right there. Its a bit rude. However, I heard a lovely story about an old man who said to a mum with a DS boy (11) while they were out shopping, "Do you realise what your son was just doing?". She thought he'd done something naughty, but the old man showed the mum how the boy had gone to every bush and every flower in the garden section of the store, and smelt EVERYTHING. Not just the flowers, but the shrubs too. When saying bye, the old man whispered to the mum, 'My boy is 23'. I liked that story.

Anonymous said...

Great post Kim. I too know exactly what you mean about wanting to run up and talk--all the while knowing the person will likely think we are nuts :)

Dr Maroon said...

Hey Kim, Just read the lada Owners Club page.
Now that is good writing.

Work it out.



Kim Ayres said...

Quinn - your welcome to ramble here anytime :)

Dr Maroon - I've got this independently-raising-eyebrows trick that keeps toddlers bemused in queues.

Jo - That is a nice story :)

Rebecca - I've never had anyone do it to me, so I have no idea how I'd react if it was the other way round. That's probably why I'm never sure what to do.

Dr P. Maroon - glad you like the Lada page. Unfortunately I can't work out quite what you mean. I think I half understand the Peter bit, not sure about the love (though could be more to do with the 2 day party that's been going on at your blog). You could always email me with an easy to understand comment :)

Dr Maroon said...

Kim, we may never know just what I meant.
Probably an exuberant display of filial emotion brought on by alcohol.
(yer me best mate you are…) you know the kind of thing.

‘Work it out’ is Scottish for ‘Go figure‘, I think..
Look, I thought you were psychic.

Sam, Problem-Child-Bride said...

I went back and read the Lada Owner's club post too. You're right, it is all too easy to get sucked into membership in some particular group. While usually well-meaning, they often want to extrapolate all sorts of things about you just by virtue of your being "one of them". It sets up a sort of false camaraderie from the start. Not always but, I've found, mostly.

What you describe is why I dropped out of various mothers, mothers-of-multiples, mothers of preemies, bipolar groups, I joined along the way. Although I have to say, I still keep in touch with some of the people I got to know from a few of them (not the bipolar group though - they're all utter nutters ;)), so I guess in some way their goal of connecting people worked.

There's always food for thought at your's Kim. I like it here.

Kim Ayres said...

Dr Maroon - so do you subscribe to the idea that when you're plastered you're more likely to tell the truth, or that you're more likely to talk utter bollocks?

Sam - One of the things I like about blogging is that you end up meeting and hanging around with people who really are like-minded - it becomes self selecting. Freed from geographical constraints we end up regularly visiting and commenting on sites we feel comfortable with and avoiding ones we don't, so there isn't a need to be falsely pigeon-holed. You only have to be yourself and you attract the kind of people who like your kind of personality.

I'm pleased you like it here - I always enjoy your visits :)

BStrong said...

Hey, there are many "clubs" out there, but I think the one we have a membership to is pretty good. When I see a parent who has a child with DS out and about I just smile. I figure that if they want to engage in conversation with me, they will.

We have experienced it both ways, people coming up to us and commenting about a family member who has DS, or just an understanding (been there, done that) smile. Sometimes we welcome the conversation, other times we just want to say go to hell leave us a lone.

There is no politically correct way.

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