Monday 23 December 2013

Dear Mum, Love DS....

Dear Mum,

I can sense that it's that funny time of year again where strange and odd things start to happen.
For example, a few weeks ago you got me ready for school as you normally do but when I came home later that day I was shocked to see some funny looking big green thing stood in our living room! It resembled one of them things we see when we go for a walk through the forest but Mum this one was different! It had the most annoying flashing lights and loads of glittery and sparkling round little balls hanging off it!
I don't get why all of a sudden it appeared in our house, it was too much, I just couldn't bear it so I pulled it down to show you that I didn't like it.


You wrestled with it and propped it up again then started talking with a excited voice saying something about 'Christmas' whatever that is so I pulled it down again then you seemed to know that I definitely didn't like it so removed it. At last!

Now it's not only the big green thing that I'm concerned about, what's with the books you keep showing me? They always have a funny looking man wearing a red suit and lots of white hair. The strange bit is the man's hair seems to be stuck on his chin and around his mouth! I've never seen anyone who looks like that before nor do I want to either!

Also what's with the day where everyone seems excited and my routine goes skeewiff, this is the day that I find most unnerving. You and Dad take me downstairs saying someone has been but I don't understand who. I don't like the thought of strange people coming into my house, this makes me anxious, confused and scared.
I see different shaped objects covered in what looks like patterned paper under the big green thing (is that still there, thought I made it very clear how I felt about that!) you pass me one of the objects and both look at me expectantly, smiling. I don't know what you want me to do with it, I'm confused and start to become more confused and anxious.
You rip a bit so I copy until I have taken all the patterned paper off. It's a toy but it's in a box so I can't get at it. You remove the box so I can play with it. The toy is good but what was with the box and patterned paper??  Why didn't you give me the toy as it is, I would have preferred that!

Why are there so many of these objects here under the big green thing? It's too overwhelming, my head hurts and I feel like something is bubbling away inside ready to erupt. I don't like all this strange and weird stuff and the flashing lights on the big green thing are too overwhelming, too much of a sensory overload.

Mum, if we have to experience this strange 'Christmas' thing can I make some suggestions?

  • Can we have a smaller green thing with clear lights with fewer round things or can it go in another room that I don't use much - like a bedroom?
  • Can I not have my toys wrapped in that patterned paper, I don't like the anxiety of not knowing what's inside.
  • Can I receive my presents throughout the week rather than be given them in one day, it's just too overwhelming for me.
  • Can you mark all these weird days on a calendar for me and what to expect on each day to make it easier for me to cope with?
  • Can we try to stick as closely to my usual routine as possible and allowing me some quiet time maybe in my bedroom away from anything 'Christmassy'
Thanking you in advance, Mum.

Love, Your Superstar!
xxxxxxx



Sunday 1 December 2013

Away for the weekend.....leaving autism at home.

There are things about autism that I love. These things include innocence - DS is not into superheroes or bad guys, he is more than happy playing with his spinning toys, watching bubbles and listening to nursery rhymes. Also the way DS is not self -conscious - he doesn't give a hoot what anything thinks of him therefore other peoples opinion does not restrict him in anyway, if he wants to dance around the room making a 'odd' noise then he will if he is alone or if there is 10 people there! The way he sees things from a different angle - I often seeing him looking at things really close such as a running tap mesmerised by the changing patterns and glimmer of colour. We have often sat there watching it together, something I haven't noticed before until he showed me.


Then there are things about autism that I don't particularly favour :( DS watching children playing and wanting to join in but doesn't know how to, the way autism limits his speech which makes him frustrated and angry, how it makes his hearing too sensitive so noise is unbearable, how it makes him unaware of danger, how it restricts his walking/fine motor skills/understanding.
Its this groups that makes days out as well as daily life challenging, so with this in mind we decided to have a little weekend away to see the........
Ta..da! The Coca-Cola truck!

When I heard that the Christmas Coca-Cola was coming to my area I knew we had to see it. I hoped DS would like it too with it being all lit up and would give him some nice sensory feedback. To make a bit of a weekend of it, we booked a room for the night as DS just so loves staying away.

As always, I started to prepare DS the day before about what we were going to do. As it was a school day for everyone else, we decided to take full advantage of places being quiet for DS such as going swimming at a local fun swimming centre, then see the big red truck then to the room (as we calls it)


I showed DS a picture of each of these from the relevant websites as a visual. He took it all in and then proceeded to dance and do his happy jumping around the room :)

DS was a absolute superstar! He tolerated so much, so well! I always watch him intently so I can spot any cues that he needs to get out or escape, the first clue came after about 70 mins into swimming that that the noise was getting too much. I thought he did amazingly well to last that long so we started to prepare him that swimming was nearly coming to a end.

Over the weekend, he coped with:

  • The echo and general noise of swimming
  • The drive from swimming to the hotel
  • Checking into the hotel and getting to our room to realise that they only had a shower and not a bath as well as the drive to the transferred hotel (one with a bath)
  • Sitting in stand still traffic
  • Checking into a second hotel
  • Seeing the Coca-Cola truck in freezing weather
  • Sitting in a busy restaurant whilst having tea
  • Eating breakfast whilst sat beautifully in a strange place with strange plates, forks, spoons etc than that at home.
  • The drive home
Wow! wow! wow! I'm still in shock at all this. This is the second trip away that has been fabulous with no meltdown in sight.
Of course DS will have 'wobbles' and anxiety attacks which I'm finding with early intervention from me I tend to be able to bring him back to being calm - I've just to catch it early enough!

A magical and precious time with DS and autism seemed so far far away....

Have a good weekend xx