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A day in the life of Amber

80 replies

amber32002 · 23/10/2008 08:16

I wonder if it would be of any use to people to occasionally see what life's potentially like for a child with an ASD when they grow up? It'll only ever be one example (mine ) but it might help to explain how each day 'feels' for me...and bits would help explain life for anyone on the autistic spectrum, whether LFA or HFA or any other sort.

Today, 5am. Oh no, I'm awake again. Always been a very light sleeper. Try to get back to sleep for a little longer, but it's difficult because my brain automatically starts downloading all the info and planning for the day ahead (grr). Must have got back to sleep, as it's 6.30 when I next look at the clock. Attempt to pick up dressing gown from floor. This takes three attempts, since I'm not focusing on what I'm doing the first two times. Get downstairs and let dogs into garden and do the whole dog-feeding-kettle-on-dog beds-tidied-computer-switched-on routine. Feed dogs. Make cup of tea. Am feeling rather brave, so decide to try a new breakfast cereal as part of my "For goodness sakes try something new once in a while!" plan. Sit down at computer, take a bite of the new cereal, yuk. Urk. Horrible. Crunchy, too sweet, rough, strawberry-smelly, urk. Dogs have most of it. They seem happy. Answer some messages on the computer.

7.30. Better wake hubby up. Son's on half term now so at least he can sleep in. I now have the shower challenge. Showers involve water, which is wet, and the shower hurts. And the soap tends to get away from me. And my sense of balance is not good, so I take my life in my hands in any shower with a wet surface to stand on. Then there's the rough towel hazard too, even the ones that I wash in extra softener feel like sandpaper. And don't even talk to me about the toothbrush and toothpaste thing and how overwhelmingly minty and painful that is, but it all gets done.

Next really big challenge, the clothing. What to wear. I tend to have ten tops all the same but in different colours as that's easier than choosing different tops. And lots of the same trousers. Everything has been carefully felt and examined in the shop to see that it's very soft and non-scratchy as possible. Which colour...arrghh...can't wear the same colour every day, as that's Not Done so I have to choose one. Then, the hairbrush hazard. Hairbrushes hurt. Makeup next, which at least I can choose for being the right texture and non-smelly ones, though it's taken years to practise putting it on without having to take it off again because I've made a mistake with it. Get a hug from hubby, who's an absolute sweetie (he's ASD as well). I don't trust a lot of people to touch me, and unexpected hugs are always 'painful', but if I know I'm going to hug, it's fine.

Shoes...hmm. I have a 'blind spot' about shoes. I can't wear heels as I fall off them, so that means I have to wear flatties or boots, and any new shoes pinch, dig and hurt, so it takes ages to get the courage to wear a new pair anyway. OK, boots it is today, old familiar ones, polished to some sort of standard.

I'm exhausted, and it's only 8.15am. Now for the rest of the day...

OP posts:
amber32002 · 27/10/2008 16:46

Ah, now I haven?t said what it?s like at a party?That?d possibly be a good one to frighten/enlighten/bemuse people with, too.

Friend?s New Year?s party. We?re invited to it, but at least I know her house really well, and I?ve met a number of the people before too, which helps. I know where to park (vital), and where the front door is (also vital). She?s talked me through what will happen, which is great. I convey all of this information to hubby. What to wear?arrrghh. Can?t be anything too unexpected or new, otherwise the sensory overload from that means I?ll crash out after half an hour. I pick an outfit that?s very comfortable to wear, but it?s still not my usual clothes, so that?s a worry for me.

I get there about fifteen minutes after it starts, with hubby. Friend open the door, and immediately greets me with a social kiss. Arrghh! Can?t think for a minute ? total overload. She?s forgotten I don?t do the social kissy thing! Drat. Oh well, at least I?ve remember to say hello and say something nice about her outfit. This is important.

In we go. A wall of noise hits us?there are already a load of people here as they were staying in her house for a few days. And the smells too ? food, drink, perfumes, aftershaves. And there?s flickering flashing lights in the hallway ? those fancy flashing party ones, except I can?t be near them so I have to move fairly swiftly to somewhere else. Total overload! Help! Hubby?s immediately invited to go into the garden to get a beer by the husband of friend, so that?s me by myself for a bit. Eek! Ok, girl, think?what do we do at parties? We talk to people, nicely. Mind?s a blank?I know, I?ll find the kitchen and ask if there?s something I can do. Kitchen?it?s here somewhere?follow the cooking smells?aha, there it is. And full of people. Drat. I ask one of friend?s people-doing-the-cooking (don?t ask me their names - no clue who they are ? might have met them before, can?t tell). They hand me a plate of things. Ah, I?m now carrying a plate of things. They appear to be canapés of various sorts, but what sort, and what am I supposed to do with them? Eat them? Take them somewhere?! Out of instructions. Hmm. Most people would think to ask, but I?m temporarily speechless. Ok, I think I need to take them out to people. Someone notices I haven?t got a drink and hands me a champagne flute with sparkly wine stuff in it. This is a Bad Thing as now I have a plate AND a glass, and I have to try to balance both of these and navigate a crowd of what appears to be total strangers. Some of them are saying hello to me, and someone kindly kisses me on the cheek. I now seem to be wearing some of the sparkly wine stuff. Oh b*m!

Some mopping and apologising later, and with the glass put firmly down, off I go into the crowds with the plate of thingies. Noise?perfume, people I don?t recognise who are talking to me?goodness me?and their Christmas tree still has flashy light things on as well so that?s another corner to avoid. Aha ? I recognise that person, that?s friend?s mum! And there?s the lady from the school run ? er, name?what?s her name?I?ve known her for eight years so you wouldn?t think this would be hard would you?aha, Sarah! Got it! They beckon me over, and we?re joined by two other people. This is when it occurs to me that I?m now involved in a Group Conversation whilst holding the remains of a plate of thingies and standing in a room filled with background noise and music etc. Now I have to try to switch attention between each person, which is horribly difficult and I can?t hear what they?re saying. I resort to lipreading, which I can do a bit if I can hear a little of what they?re saying, and it saves looking at their eyes too, but I have no clue at all what I?m supposed to say back to them. So many ways to get this wrong ? I could laugh in the wrong place, or fail to look surprised at something surprising, or fail to look sad at something said in a sad way, but I can?t ?hear? the tone of voice. Are they happy? Sad? No idea. Wonder who the others are?? Oh, I met them last year and the year before?oops.

This is more hard work than entering the Grand National on the local seaside donkey, it really is. I'm quite an extrovert, so it's not as if I'm just shy. I?m already absolutely exhausted, and it?s only been 15 minutes. I have to keep going for another few hours before we can leave without seeming very rude. Time for some emergency measures ? the disappear-into-the-garden-for-a-while trick, the lock-self-in-bathroom-for-a-while manoeuvre, and the find-hubby-and-just-talk-to-him-with-no-contact gambit. I also find a really interesting book to look at for a while, and find someone who?s an engineer so we can talk about engineering for about an hour. Someone comes up to me and says ?Amber, I don?t know how you stood that boring conversation for an hour ? well done!? Not sure what he means. That was brilliant! These tactics buy me quite a bit of time, and a glass of bubbly (in a tumbler this time!) helps. (We?re walking back, thank goodness)

Somehow, don?t ask me how, we survive three hours. Well, sort of. Hubby?s been fast asleep in a chair for the last hour (which he does when overloaded, but they?re used to that?), so I prod him awake again and we manage to find our hosts who by this stage have drunk rather more than one glass, I suspect, and who give me a really big hug (arrghhhh!). Hubby might have been hoping for a really big hug off my friend, but all he got was a handshake. I try to remember what to say ? but at this stage I could be coming out with complete nonsense, so it?s best to smile and nod and depart whilst we can, leaving the party still raging away. Luckily friend knows we?re not being rude if we leave early?

Next day, nothing. Just peace and quiet and favourite obsessional hobbies whilst we recover. We like being sociable, but goodness me it?s hard work for us, and at such a big 'cost', even if it's not very often.

OP posts:
HelensMelons · 27/10/2008 18:30

Amber, absolutely brilliant.

Last time I was at a party, there were canopies - something that I shall now always be suspicious of. Anyway, it was prawn/shrimp things done in the oven and I ate the whole thing - even the horrible, crunchy tail that you weren't supposed to. Never again!

WhizzzBangWhizzzOOOooAhhhh · 05/11/2008 18:04

Hi Amber - can I just say how fantastic this thread is! I'm a TA in a secondary school & a lot of my day is spent supporting a lad with AS. I've read several books on the subject & know the lad quite well but your insights are great.
Can I ask (if you don't mind) how you cope when something is bothering you (& what's the best way for others to cope with you!). This lad is very reluctant to talk about whats bothering him but it prevents him doing his school work as he is so distracted and anxious.

amber32002 · 05/11/2008 18:31

Whizz, (if I may shorten the name ) I'm glad a few of the insights are helpful.

Hmm...if something's bothering me? Depends what. There's two possibilities:

  1. Haven't a clue what it is that's bothering us. This is entirely possible. Why? Because our brains insist on trying to process every single bloomin' bit of info, unless we can switch it all off and concentrate obsessively on something to block it all out. So, there we are, trying SO hard to cope with school clothing (uncomfortable) and background voices (can't block 'em out) and enough visual things to look at to confuse our vision totally...and we might walk straight into a table corner and not even notice. Or be ill with a fever and not have enough chance to even think about it. Or know that something's really wrong with a group of people's attitude to us, but be unable to explain it because it's like a deaf child trying to 'explain' how something sounds wrong.

  2. Do know what it is that's bothering us, but don't want to say as you might do Something Scary. People do outrageous things when we say something's wrong, like make eye contact, go to touch our shoulder or arm, scrunch their face up, burst into tears, shout at us - you'd be amazed. And it's all ten times 'louder' for us than it is for you. So Not Saying is sometimes a lot safer. That way nothing scarier happens.

Suggestions - writing is often easier. Can he use the written word, or pictures, to explain something instead? If I'm not sure how I'm feeling, I look at pictures to find one that looks like how I feel. It might work for him, even if he's not a very young child. But done discreetly of course. And don't react to it in any noticeable way if he says it. Ask him what he'd like to happen, make sure he's aware of each thing you might suggest or do, and a full explanation why.

Might that help?

OP posts:
WhizzzBangWhizzzOOOooAhhhh · 05/11/2008 19:49

Thanks Amber - thats a great help .(my 'normal' name on here is Whizzz, this is just my dressed up bonfire name ).
I hadn't considered the idea that the outcome may be something scary for him. I will see how he is tomorrow & maybe suggest the writing things down option.
Thankyou

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