Monday, 22 September 2014

What your man REALLY wants in bed...or not

I had a bit of a random epiphany the other day, but before I share it I should point out that if you know me and don't want to know anything about my sex life (or if you don't know me and don't want to know anything about my sex life), then stop reading.

Seriously, stop now.

Friday, 19 September 2014

accessibility : not just about ramps and wheelchairs

I think that there is something of a misperception to do with accessibility.  Focus tends to be on physical access - is there a ramp or only steps; can the person at the information desk see if there is someone in a wheelchair waiting to ask a question; is there a lift; can those doors be opened by a wheelchair user.  Important as these aspects are, they are not the entirety of the issue.  Even taking into account sensory impairments, there are a lot of other disabilities out there that need to be considered, which is why my word of the week is 

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ac·ces·si·ble   (k-ss-bl)
1. Easily approached or entered.
2. Easily obtained: accessible money.
3. Easy to talk to or get along with: an accessible manager.
4. Easily swayed or influenced: accessible to flattery

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Physical accessibility is only part of the picture, but having spent Smiler's life trying to find places to visit that are suitable for our family I know many venues find it difficult either to recognise this, or to know what to do about it.  After all, we're all quick to grumble when the lift isn't working or our wheelchair doesn't fit through the door, but how many of us talk to shop managers about whether their announcements actually need to be that loud, or to zoo staff to point out that the information presented in an exhibit seems unnecessarily complex?  Even if it crosses your mind, having the time to feed this back, as well as the opportunity to talk to the right person, the confidence to present it to them even if you think it's a small thing, and a realistic enough perspective to suggest a reasonable solution which would improve the situation, even though what you really wish they would do is drastic and expensive.

Smiler has severe learning difficulties, complex health needs, and uses a wheelchair.  Over the last few years we've been surprised to find how tricky it was to find the sort of information we needed about local (and not so local) attractions.  Not just slopes and distances, but how spaced out are the tables in the restaurant, how easy to understand is the information presented in the exhibits, even how loud are the announcements.  But having spent all of Smiler's life learning to spot these things, it has become second nature to us, checking the level of sensory input, physical space and limits, clocking the places and situations which might be difficult, or measures which might help everything run more smoothly.  

The task now is to try and find effective ways to assess this, and to pass this information on to the people that can actually do something about it.  It's a difficult offer to frame - "how would you like us to come and check out your place?" seems a little flippant, but a couple of local venues have taken us up on it.  One in particular is very enthused about taking the opportunity to tap into our expertise, and I hope to be able to tell you more about it soon, but in the meantime, feel free to keep us in mind or recommend us to anywhere you think might be interested!

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The Reading Residence

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Tuesday, 16 September 2014

the sweet and the sharp

In less than two weeks Smiler will have another birthday.

Thirteen years ago I was sat around watching the days pass by waiting for this infant of mine to make it to the outside world - the world outside of me.  
Thirteen years ago I was restless and exhausted, eager to get the pregnancy bit over with and get on with the parenting bit.  
Thirteen years ago I imagined what life was going to be like, what my child was going to be like ...
Boy oh boy did I have it sideways.
I'm not sure how much anyone really knows what to expect - I certainly didn't, but it's tricky to know how much of that was because within hours of giving birth I was being given a whistlestop tour of the neonatal intensive care unit.

So Smiler's birthday is always a day of mixed emotions for me.  He's happy and excited (even though he's not really sure what's going on) and loves the attention - the balloons, the cake, the birthday badge; the candles, the singing, the wrapping paper - he loves it all.
I love to see him engaging with the people around him - with the world around him, but deep inside I grieve for that baby I was expecting, that baby I didn't get.  
Even as I smile at his delight, somewhere way down deep inside I can feel an ache for the innocence, the naivety of the days before his birth.  A sharp stabbing reminder of way back when - way back when I knew nothing about blood clotting factors or portage or anaesthesia or makaton.  When the death of a child was an inconceivable tragedy, a desperately sad but ultimately distant event.  Not something that was ever going to touch my life.  Not something that could ever happen to my child.

I wish that I could see the smiles without remembering the tears;
enjoy the laughter without hearing the screams;
feel the warmth of the hugs without fearing their lack.

I wish that I could calmly breathe in today - just today, as it is.
No heavy dull ache from thirteen year old memories,
nor flinching at the sharp edges of the months to come.
I wish that I could just breathe.

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Monday, 1 September 2014

Things have been difficult for the past month or so, and the next few are going to be a challenge as well.  There are a couple of things going on with Smiler that might be resolved easily, or might not.  My health isn't great either - the seizures, along with the concentration and memory issues associated with this brain cloud of mine are making daily life complicated.  Although I'll be trying to get back in the habit of joining in those favourite link ups, my focus for the next little while is going to be on what's going on offline.  Good luck for the new school term everyone!

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