Monday, August 15, 2005

Downs Syndrome is Not an Issue

A tricky one this. Having started my own blog I have, naturally enough, begun reading others. It didn’t occur to me straight away to look for blogs connected to Downs Syndrome (or Down Syndrome – without the ‘s’ – as they say in the US), despite the fact that my daughter was born with it over seven and a half years ago. This is primarily because it is not an issue for me.

Of course sometimes it becomes an issue - like when we recently moved house and had to sort out her schooling needs, or on School Sports Day when she enthusiastically came last in almost every event (see Sports Day blog entry for more on that) – but on an everyday level Meg is just Meg in the same way that our ten year old son Rogan is just Rogan. Each has their own way of behaving and each brings their own unique set of complications and rewards. We deal with Meg’s needs in the same way we do with any of the other children, in the same way any parent does – doing what is needed, in the way that seems best at the time. It doesn’t become an ‘issue’ until someone else makes it so.

So why am I mentioning it now? Because I’ve been looking through some other sites where DS is one of the primary focuses of the blogs and two things have leapt out at me.

The first is that the vast majority seem to be by people who have a religious background that means that they now thank God for their son or daughter, and see their child’s DS as a blessing or a lesson. But as a profoundly atheistic father I winced intensely after she was born and a few people commented that having a child with DS was a blessing from God. I don’t need a god to tell me how special my daughter is. And I think, more importantly, I don’t need someone else trying to comfort me with their religion in what they perceive to be a difficult time for me. There’s a horrible patronising element to it that makes me want to scream/puke/thump someone (delete as appropriate).

The second thing is that, in my mind, one of the primary purposes of sites that are focusing on DS, is that it helps other people come to terms with the normality of the condition – whether that is new and anxious parents, or even friends or relatives who are coming into contact with DS for the first time. But undermining this noble aim is the lack of photographs about showing parents interacting normally with their child. There is a fear – perhaps understandable, but in my opinion unnecessary – that by having identifiable photos of themselves and/or their children, they could be stalked by some kind of pervert or weirdo. So as a bollocks-to-that gesture, below is a picture of my daughter and her very proud father.

If you would like to see a very well written and enjoyable blog about the everyday experiences of a father of a child with DS, then I would recommend you visit this site (http://downsyndromelife.blogspot.com/). There is only one mild reference to God, if you search for it, but his emotional experience of parenthood is tangible and warming.

Meg and her father

19 comments:

dRaven43 said...

I agree with you completely. Other people have no place determining what deity may or may not have caused that which your daughter and my son were born with.

What kills me even more is when people tell me they're "sorry" when they hear that my son Cevin has Downs. I'm not. I'm not sorry in the least. So he was born a little different? He was damned to difference before conception with parents like my wife and me.

Sure, it's a shock when they're born but you acknowledge it and move on, taking a few different steps along the way. Besides Cevin's three therapists a week that visit to help him get ready for school, he's a completely normal little boy. He's two years old and destroying EVERYTHING.

Your daughter is adorable!

Not a stalker,


David

Kim Ayres said...

Hi David,

I love your comment:

"He was damned to difference before conception with parents like my wife and me"

I think that sums up beautifully the way my wife and I both feel about Meg.

Kim

BStrong said...

Kim,
Meg is very fortunate to have parents like you and your wife. I agree fully that Meg should be parented the same way as Rogan and given the same opportunities and responsibilities. Our children don’t have a disease, they’re not sick, they just have an extra chromosome, it’s a part of there genetic make up just like the color of ones skin.

Even though we are religious I do try to limit any reference to god and my beliefs because I understand that there are people out there that live differently and that’s ok with me, it’s their choice. On that same note, I don’t mind reading blogs that make references to god. I just find people and their stories interesting.

We are looking to buy another house now and it is difficult because we are searching for something very specific. One of our requirements is that our next house has a carriage house in the back, or an apartment. Even though Amanda is only 16 months old we would like to give her the opportunity to live on her own when she’s older 18+. Her having a residence on the property will make it easier for her if she needs something, but it will also give her the independence that she may want. I realize that we are thinking way ahead, but we just don’t want to move again.

I enjoyed reading your blog and will visit again. Thank you for adding my site to your post.

Cheers.
Brian

PS. I think that once my wife is a little more comfortable with blogging the pictures will come.

Kim Ayres said...

Hi Brian,

Thanks for your positive comments.

I have no objections to people looking at their relationship with God during times of stress; in fact it can be fascinating. Indeed, at some point I will probably delve deeper into the fact that I pretty much lost any last lingering belief in any kind of benevolent, all powerful being around the time of Meg’s heart operation (when she was 5 months old), when I had to face the very real possibility that she could die. At a point where I looked for some kind of spiritual support in the universe, I truly felt nothing. Meg survived, but all I could ever put it down to was the fact that we were lucky this time, just as we have been unlucky at other times in our lives. It’s when people try to ‘console’ me with their idea of what God wants, that I want to lash out hard. As David says above, I’m not the least bit sorry that Meg is who she is. I know you understand that completely.

I appreciate your input Brian, and look forward to the day when I see a photo of you and your daughter

Cheers,
Kim

Julana said...

Your little girl is very cute. She must be about the age of our son, who recently turned eight.

Kim Ayres said...

Thanks Julana. Meg's actually 7 and a half. She'll be 8 next birthday. Had she been half an hour earlier she would have been born on Friday 13th, as it happens she just made it into Valentine's day!

Julana said...

That was a mercy!

Rob Hutten said...

Kim,

Beautiful post.
-Rob

Kim Ayres said...

Many thanks Rob

Jeff said...

Kim

I think you and I would get along really well. Nothing drives me more insane then someone telling me that my son having ds is a gift from god.....or some other patronizing comment. Nash is just Nash and his having Down syndrome is just one of the many characteristics that make up his personality.

I look forward to reading more of your thoughts.

Kim Ayres said...

Thanks for commenting Jeff. I appreciate your input.

Naomi said...

I missed this one, must have been before I found your blog.

I agree wholeheartedly, we parent Callum in the same way that we would parent any other child. I'm an athiest, as you already know so no mention of God on my blog. I also quite happily post photos.

I want people to see Callum, to see that he's just a kid like any other (apart from much cuter of course).

I post on a DS forum that is mostly americans and I've seen the "God doesn't give you more than you can handle" and "God must have a purpose" type postings over and over again and they always make me wince.

Kim Ayres said...

"God gives special children to special parents" was a phrase I heard several times after Meg was born. I wanted to shout that if that was true, how come so many people gave up their children with DS for adoption, or put them in institutions, or why are 90% of potential parents aborting their baby if they discover it has DS?

But I didn't, because in those days I was more of a people pleaser and didn't want to offend anyone.

These days however...

Ruth Dynamite said...

This was beautiful - just like your daughter.

Kim Ayres said...

Hi Ruth, thanks for taking the time to comment and welcome to my ramblings :)

jotcr2 said...

My husband and I got oodles of cards saying, that 'she will give you much joy'. Everytime we got a card, and it had the joy word in it, I squirmed. At the same time, you know that people are being positive and nice - but still...

Kim Ayres said...

Jo - I understand completely. Of course people are trying to be positive but that's the problem - they are "trying" to be positive, rather than being positive, and that makes you feel far worse.

heather said...

I found your blog from the 5 minutes for special needs link. I enjoyed this post because I feel like Morgan's Ds is a nonissue for us, too. (Sure we deal with it everyday -- like trying to toilet train right now) But lately I have enjoyed reading others blogs and experiences with Ds that made me re-think never really addressing the Down syndrome on my blog. There is so much more to Morgan and our family that I didn't feel it needed to be the focus of my blog or define our family. Your daughter is sooooo beautiful! Thanks for letting me peek into your life for a minute! :)

Kim Ayres said...

Heather - welcome to my ramblings and thank you for taking the time to comment.

There are many blogs out there which focus entirely on their child's DS, but like you, I tend to feel it's only one part of who my daughter is, and certainly not the defining aspect. Since this post was written 3 years ago, only a handful of posts have had the DS label attached.