Sunday, May 29, 2011

the importance of support

So far most of my posts on this blog have been about things that my kids have done or said - or about some of the tougher aspects of being a parent of kids with type 1 diabetes - at least the emotionally tough bits.

For this one though I've decided to write about the amazing support I have from the Diabetes Online Community (DOC).

One of the most difficult aspects of being a parent of a child with a chronic medical condition is the sense of isolation. With Type 1 Diabetes this isolation is compounded by ignorance based in a complete lack of understanding of the differences between Type 1 and Type 2 Diabetes. Not only do parents feel that none of their friends or family members understand what they are dealing with, they also find that, for the most part, the wider community automatically lumps our kids condition with what they hear about "diabetes" in the media - that it affects overweight or obese people who have not looked after themselves.

Okay - so I am the same as many parents of T1D kids in that before my kids were diagnosed I didn't have much of an idea about Type 1 Diabetes. Some years ago I did watch an adult friend become very ill and suffer dramatic weight loss, he was eventually hospitalised and diagnosed with "Juvenile Diabetes' - but my knowledge was very limited and I had no idea about the difficulty in managing this condition in a child.

So, our job as parents is not only to keep our kids alive but also to be their advocate and defender - and to educate everyone we come into contact with about Type 1 Diabetes.

But now I'm getting off track - since I wanted to talk about the DOC.

When my daughter was diagnosed I found myself essentially left to my own devices. Nobody had any idea what life was like with a child with T1D. Everyone had advice - usually along the lines of, "she'll be better now that she's on insulin", "it's pretty easy to manage - just a couple needles a day", or the one we ALL love, "chin up, at least it's not cancer!"

I eventually gave up trying to talk to friends about what I was dealing with and how hard it was for my daughter because it was easier to just keep it all inside and pretend I was doing fine than to see the look of pity and the "when is she just going to get over this - it's not that big a deal" on their faces whenever I spoke to them.

If there is one thing that is an absolute certainty with this disease it is that unless you live with it you JUST DON'T GET IT!!!

It was then that I decided to turn to the internet, at least to see if I could find some kind of support network of other parents living with T1D. There were lots of options although none of them ONLY for Parents AND only for Australian families.

As the old saying goes - if you want something done - do it yourself. And that's just what I did.

I set up a Facebook based support group called Parents of Aussie Kids with Type 1 Diabetes Support Network. Not a particularly interesting name - but I wanted a name that was so obvious that if people typed it into the Search box on Facebook they'd find exactly what they were looking for.

In the beginning it was a Public support group but as it grew I decided to make it a "Private" group in order to provide a bit more security for the members - and since then the support network has grown and essentially become a second family.

Every member of that group knows exactly what I am going through with my kids, they understand the sleepless nights, they understand the fears, they understand the utter frustration that occurs on a daily basis when things just don't go right - or the thing you did that worked yesterday - or even 2 hours ago, is not working now. They get what it's like to deal with schools and daycare centres and ignorant people.

Finally - I found a group of people that do truly GET IT!

Now - when I'm with my "outside" friends and family I really don't talk about T1D much - if they ask something about it I'll answer them but I don't complain about being tired and I keep my mouth zipped tightly shut when they complain that they "only" got 6 hours sleep the night before because one of the kids was coughing or had a bad dream.

I do not know where I would be without the amazing Diabetes Online Community. Every member of that community has an inspirational story and every family does whatever they can to look out for their child or other family member with T1D.

A lot of bad stuff happens online, particularly on social networking sites such as Facebook - but support groups like the Parents of Aussie Kids with Type 1 Diabetes Support Network - and the one my son started, Teenagers with Type 1 Diabetes, are an example of how these forums SHOULD operate.

No comments:

Post a Comment