Downs With Ups

The most difficult part of setting up this blog was creating a name for it, for I wanted something that would be interesting, descriptive and light-ish.  As one who finds it difficult to make decisions easily, I enlisted the help of several friends, sending them some ideas I’d thought up.

They each gave me their valued opinions and most of them suggested something like ‘Ups and Downs’.  This would have been a terrific title, but unfortunately that domain name, along with my other ideas, already exist in cyber-space.

Not one who gives up easily, I played around with some other ideas and ended up twisting the cliché, thus summarising basically what this blog is all about.  Downs With Ups.

My original options for names included: ‘On the Edge of Normal’ and ‘Come Walk in Our Shoes’.  The former I liked, because on one level, I have a normal-ish family, which consists of a mum, a dad, a daughter, a thoroughly spoilt cat and an extremely cute guinea pig.  We live in an average suburb in a regular house.  We do what I imagine most families do: pay bills and taxes; have a circle of friends and family, of whom we never have enough time to see, and seem to spend a lot of time shuttling our daughter to various after school activities.  We try to make a point of having dinner together each night of the week, although this is sometimes difficult to achieve.  At another level though, we are completely different, as I’m sure this blog will illustrate.

The latter, ‘Come Walk in Our Shoes’ was relevant I thought, because most people don’t experience a life quite like ours.  There are many labels that could fit our family, such as marginalised, minority, different, disability and special needs.  I imagine these descriptions wouldn’t sit comfortably with most people and I’m not sure they sit comfortably with me either.

I guess most people might try to imagine what it would be like to raise a child with a disability if prompted, but otherwise wouldn’t give it much thought.  Of course, that’s okay. Why would anyone want to do that anyway?  It would be difficult I imagine, and possibly confronting or saddening.

However, if ever they needed an alternative perspective or wished to take a snapshot of some of the issues families with kids with special needs encounter, then I hope this blog will help achieve that.  I must confess though, that I know no different.  My experience is in raising a child with a disability.  I have no other children with which to compare, no other experience with which to use as gauge.

So, with all this in mind, I have several posts to share with you over the next week or so about some issues that have recently been highlighted for me.  They have a lot to do with my mortality and how this affects my role as a parent of a child with special needs.   I want to share them with you not to make you feel depressed, but to give you an idea as to the extent of the planning I feel I need to undertake, so that my family can meet the future with confidence.  I hope they prove interesting for you.