Tuesday, March 20, 2012

20 - 'normal'

Pic 20 WDSD

I prefer to use the term 'regular' rather than 'normal'. Its probably neither here nor there but it is my preference. I'm not sure what normal is really. On a whim and inspired by some other crazy special needs mama on fb I decided to do a post a day to celebrate World Down Syndrome Day - the first one to be recognised as such by the United Nations. It seemed a good idea at the time. After a while though it got hard. I want to shout from the ceiling how great my daughter is - because there are some people who see Down Syndrome as a 'burden'. I want to 'normalise' her - in the eyes of the community - and I do that partly by sending her off with all the other kids. She deserves that opportunity. At the same time these posts highlight that she is NOT 'normal'. I don't get a month or 21 days to celebrate all the different gifts, talents and torments that Kit brings to the world...
I don't need to for a number of reasons which I have been thinking about and trying hard to articulate but it still isn't quite clear so I ask your patience with this one.
Once we got the twins home and Phil had returned to work our life settled into a rhythm of sorts. We joined Lifestart (an EI provider) which gave us wonderful support and along with NSW Down Syndrome Association, put us in contact with some other great families in similar situations. Life was pretty cruisy (in hindsight!). The maternal guilt was there though - all these special needs playgroups, weekends away with other special needs mothers/families - what about the 'regular' life - that fantasy was still there with Kit, after all. And so I did a couple of things - I joined a local 'typical' mothers group - the evidence of which is up above in the many babies photo. Now I didn't know what to expect at such gatherings but the little I did was gleaned from friends who'd had kids before me and were really attached to their mothers' group friends. I thought I should give Kit a chance to mingle with a bunch of regular babies and that I too deserved a window on 'normal' parenting. The other thing I did was enlist my wonderful MILs help - I enrolled in Mums'n'bubs swimming classes - where I went in the water with Kit and Marea took Hannah in the pool in the same class. At one point my nephew Jacob also came along so that was a lovely thing to do.
The mothers group didn't really match my expectations. I didn't make any long-lasting friendships there at all. Oh they were lovely women. But I just didn't 'click' with anyone. We went to a couple of birthday parties. I went to lots of meetings in parks and cafes. It wasn't that they weren't nice women - and there was nothing wrong with their kids (well they were only babies after all - very well behaved! lol). I still run into some of these mums from time to time - and we exchange smiles of acknowledgement. A while ago it might even have been a quick 'hello' and catch up but lately it isn't even that. We've all moved on.
I do know a bit more about those kids though. I know 2 ended up getting help from Hannah's EI group because they were struggling to meet later milestones. I know one has been diagnosed as on the autism spectrum. One little one who had some digestive issues has had a pretty rocky road at school because of her medical issues. The tiny little boy is now tall and skinny and strong looking and learns piano at the same place as Kit does. It is nice seeing them around - all so different. With different strengths and weaknesses. Just like Kit and Hannah. That is why one of our mantras is "more alike than different" - cos really no-one is 'normal' (or everyone is)...it's our call really and on WDSD I am asking you to go for a wider and more inclusive definition of the term - because that is closer to the reality for most kids - and especially so for those with disabilities.
And so I tend to use the term 'regular' - I know Hannah is 'normal' but she isn't 'typical' or 'regular' there are irregularities in her makeup that require a little more patience and advocacy on my part. Mostly it is commonsense but there is a bunch of characteristics (a 'profile') that is shared to varying degrees by people with DS and that it is useful to know if you are going to be able to really get to know them and relax and enjoy their unique personalities, their gifts and talents. I hope that that is something these posts have given you this March.
Oh - and as for that 'failed' mothers group. It wasn't what I might have hoped for or what other friends of mine experienced but it was important and a positive place to be ...for us the 'click' came with some of the families of children with special needs and of course the madcap parents who send their children to the same school as ours and encourage and support us on this mainstream journey....Until next year...if you see someone with DS out and about, smile and bask in the friendship on offer :)

1 comment:

Tanja said...

Love this post!!!
I agree with you on the mothers group as I'm in the same position at the moment. The hunt continues for 'someone like me' in this small, rural community.