Another day in the life of Amber

[amber32002]

Amber goes to the Doctors

It?s a reasonably simple thing, going to the doctors to get a repeat prescription, isn?t it. Not if you?re ASD it isn?t.

Thought long and hard about what I needed to say to the receptionist. Phoned the doctors. The receptionist told me that my usual doctor was now working from another site. Panic set in.

I asked if I could transfer to that other site as a patient. The receptionist didn?t know. She said I had to go to the surgery and look on the map to find out if my address was ok for that other doctors surgery site. I asked her why she couldn?t just look, but she kept repeating that I had to go in and look, so I gave up, rather stressed out and confused. I accepted an appointment to see a doctor I haven?t seen before (urk).

Checked several times to make sure I had the right doctor?s name. Turned up at the surgery on time (I have to be on time ? can?t be late or else I panic). Went to the reception desk, and told the lady who I was and who I was there to see. She was also dealing with a colleague who was trying to contact someone in Australia, and started talking to me about area codes for Australian phones. I have no idea at all. This is extremely strange. I hadn?t prepared for that conversation, so now I?m having to improvise and feeling even more stressed.

She gives me a yellow circular disk on which someone has written the word ?orange?. I?m not sure what to make of this either. It isn?t orange, it?s yellow. Goodness me, I?m puzzled.

OK, have to choose somewhere to sit down. So many seats to choose from. Can?t sit right next to someone if there?s other seats further away as that?s Not Done. Ok, chosen one. Phew. Trying not to get eye contact from anyone...

Notice there?s at least four more people to be seen before me, but my appointment time is 11.15 and it?s already 11.15. Oh no, it?s going to be late. More stress. I can feel the need to start tapping my feet or hands but I?d rather not because we're in public. Try counting the floor tiles, Amber...anything to concentrate on...

Eventually (20 minutes later, arrghhh!) the bell goes for my appointment. I now have to find the right room, which has an orange square on the door rather than a yellow circle. Oh well. Really nervous because a door with an orange square doesn't match what I've been given.

In I go, and the doctor asks me to sit down. I explain to her that I need a repeat prescription. All goes extremely well until she decides to ask about holidays. I wasn?t expecting questions about holidays. I have to improvise again. Drat. More stress. Out I go.

Back to the office. I know I need to sort out some faxes, and the next thing I know I?ve got my head on my desk , with my brain just totally cut out. Heck, can?t afford to do that?must carry on?so I take some time to just sit and listen to some music on the headphones for a few minutes.

Thank goodness there?s no other meetings planned for that day.

Oh drat, it's put question marks everywhere where there's supposed to be a '
Sorry about that...

wow thats very insightful Amber. DO you use relaxation techniques at all?

that sounds exhausting.

not sure if you have already tried this but
i used to be a great worrier about everything, and had a few sessions of CBT. There was lots of writing lists about what i worried about, what a neutral observer would have thought if they had known what i was worrying about, adn then looking back 2 weeks later and seeing if the things i was worried still appeared sensible to have consumed me 2 weeks ago. It did help me.

I also have an excellent CD 'complete relaxation' or very similar by Glenn Harrold (i got mine from amazon) which i find v useful.

This makes me realise why my DS falls asleep on his desk at school so often. He finds the doctors stressful too, and constantly counts the surgery doors. He has to know which number he is going in, and if he is next.

I'm glad you have decided to keep posting. I learn a little more from you each time.

Very insightful post, thanks.

The receptionist should have been able to tell you straight off if your address was OK so you can keep your old dr...that just sounds like pure laziness and/or incompetence to me!

I hate being late too, would rather be way early than one minute late and risk being told I would have to rebook (worst was when I arrived 15 minutes early one time, computer-checked myself in, waited about 20 minutes after my designated appointment time to be told that there was no record of me having checked in, and that I would have to rebook (they allow you to be 10 minutes late). I fussed and they allowed me to see the dr...)

Bizarre about Oz codes, I am from there but wouldn't really have them all down pat... (07 Qld 02 NSW 03 Vic 05 SA 06 WA, don't know Tassie or NT and I only lived there 25 years!)

You'd think they would have the colours and shapes matching!

I hate having to wait, and do like to know how many people are in front of me so that I know I haven't been forgotten.

I don't like making eye contact with random strangers, but only because I have lived in London too long and don't know if they will think I'm a weirdo for looking at them...

Sorry you've had such a stressful day...

i havent got any1 officially diagnosed with asd, but i find your posts so insightful, and make me think aaarrr so thats why he does that. music has always been a good calmer for ds3, from being very young, i think maybe i need to get my dh some headfones and some decent music and try him with it when he gets stressed out too. plz keep posting amber, i know i find it very useful.

I am very relieved my local GPs has no complicated colour systems for the doors.

Strangely, relaxation techniques don't work for me the way they're supposed to. I guess most of them are designed for NT brains, or maybe mine is just a very stubborn one.

What works is my 'time out', (hobby time) or doing the wrapping-myself-in-the-duvet trick so I can shut down for a while.

Just read your entry - very insiteful. I'm confused by the colours to your doctors surgery rooms. Whatever happened to numbers?!?!

Hi Amber, I have posted another thread : Wanted....Mums..... please read it , please email me if you are interested. No pressure, but I think alot of mums would like to hear what life is like from your perspective.

Amber I'm so glad you've decided to stay. I love reading your diaries, they are very good t helping me understand my ds2's little world.

I'm slightly confused about the colours at the doctors as well, no wonder you are!

Thanks for posting, Amber. My dd had a paed appointment today and had a meltdown when we left -now I realise why it was so hard for her.

Take care of yourself, sounds like you could do with some peace and quiet

Hi Amber. Your posts are very helpful

Do you think you can write to the GPs surgery and explain the disc/colour thing? I can just see my Grandma being completely thrown by it, she is not ill as far as I know but small things like that would confuse her now she is elderly. There are lots of people that need a sensible system to cope.

I think we all need "time out" sometimes and the duvet trick works well for me too

Yes, I'll be letting the doctors know.

Next challenge, trying to get a conference organiser to realise that it's not a brilliant idea to say to someone with an ASD, "Oh yes, we forgot to say that the conference you're speaking at in summer is 250 miles away and you'll need to stay overnight and cope with shared facilities and shared canteen meals"

Egads! There's going to be a lot of thinking and planning involved for me!

hi Amber!, how are you coping with the site change?,

drsplus8, bloomin' badly unless I keep it scrolled right down so it looks familiar.

Amber at the Airport

(A trip to do a lecture a while ago). I have to plan for every single part of the journey ? when to get out of bed, how to get to the airport, where to park the car, what the car park looks like, what the air terminal looks like, what plane I?ll be on, where it goes, where it?ll land, what happens when it lands?endless detail, checked many times. Have I got the ticket? Heck..have to check that at least five times, probably more.

Drive there. Play the same track on the CD at least ten times (wonderful). Notice the car number plates, enjoy the predictable rules of the roads. An hour of peace.

Get to the airport, find a space to park the car. Can?t always manage trains as they?re too stressful, and there?s none at 4am anyway. Get my bag out of the car. Lock the car. Wonder if I?ve locked the car. Recheck the locking of the car. Wonder if I?ve left anything else in there. Check that a lot too.

Walk to the terminal entranceway, and it?s like entering the very gates of hell. Noise, flashing lights, echoes, so much to look at, so many people just wandering around the place. No clue where to go ? there is SO much detail. It takes a lot of courage not to turn back.

Ah, that looks like a sign for Airline X. Oh no, there?s no-one at the desk. Must stay calm...find a person to ask, but now realise I haven?t planned what to say. Need to think a bit first. Oh, it?s ok, the desk is opening up.

Queue at the desk. Not too close to the person in front, must not get so fascinated with the flashing advertising sign that I totally forget to move forwards. At the desk, the lady wants my documents. Are they going to be the right ones? Much fretting by me. They are. Oh good.

Through to the security area. I read the sign saying what I'm not allowed to bring with me. Now I have to check my whole bag again because I'm so worried about getting it wrong. Security guard is now looking at me in a Funny Way, since my body language is always a bit 'off' anyway and I'm probably not doing what other people normally do right now.

Up to security, and yes, I'm the one who gets the full frisk. Happens every time. I hate it. I hate being touched by people I don?t know and trust. It is SO painful. And I have to take off my coat and shoes and etc and end up dropping things everywhere because I'm not co-ordinated. Overwhelming noise and bustle around me, too.

Through security. Into the waiting area. More noise, now lots of perfume smells. I need to get a drink, but where from? The seating is dirty, the tables are dirty, and I just can't bring myself to go near them. But I need to, and I need to work out how to balance a tray and pay for things without dropping everything, which is really, really hard. I try going to the loos, but they are so echoey and smelly that it's really difficult to make myself go near those either. Don't even ask about the blade hand dryer things that are SO loud.

I have to Not Miss the Flight. Back at the waiting zone, I stare extra hard at the notice board, trying to listen out for the announcements too over the noise level. Supposing I miss the flight? It would be a disaster and I don't want to have a shutdown in the middle of the airport, not even with the autism alert card with me. People don't have training on this, and they'll try to drag me off somewhere which makes it worse not better.

Security are still very interested in me. Oh no, another frisking. It usually happens. I hate it so much. I so need to just relax for a while, but no chance of that. I have to get on the plane. I'm ok getting on the plane ? I know to find the seat, and say hello to the airline crew, and sit down. I also absolutely love planes. Out of the window I can see other planes taxiing and I'm now in heaven ? aircraft! Wonderful! I love the takeoffs (if I've remember the in-flight boiled sweets to stop my ears hurting), the flying, the looking out of the window, the weather updates from the crew, the landing. Not quite sure what to make of the in-flight snack and drink, which resembles cardboard and a cup of dishwater, but I say thank you anyway. The person next to me wants to talk to me, but I?d rather not. If I have to talk to them, that's more exhaustion for me, and I've already had hours of high stress. So far, I have no clue who anyone is nor any way to recognise them ever again, which is a big peril of me travelling anywhere alone with no people-recognition skills.

We land. We disembark. I follow the signs to the taxi rank and get taken to the hotel, and wrestle with my purse to pay the taxi driver the right amount and Not Drop the Bloomin Change! Drat, I have. Guess what ? now I have to have a conversation with the hotel staff, book in to the hotel the right way, and get used to a new room. No way am I going to the restaurant for lunch. I might order a sandwich for the room, as I'm now too stressed to be able to do anything else. If there's no room service, I'll walk out to find a shop that sells something, anything I can eat in the room. I look at emails and texts and get out a nice book of car statistics to look at for a while. I so wish that I was at home, somewhere familiar. Time to rest before I'm due to speak, though. Thank goodness.

I don't do a lot of speaking at events. Sometimes people ask why

Wow Amber, so glad we have you so to speak.

You really help me get inside my sons head and understand the trauma every day simple life is to him. I genuinely mean this, thanks.

Amber you write brilliantly and so eloquently. Thank you so much for these posts. I have a cousin with Aspergers, we're only 6 months apart in age but sometimes it can seem so much more.

Very detailed explanation. I've flown once before, when DH and I had our friends who had flown several times before with us to let us know what to do, where to go etc. There is no way I would want to fly on my own, or being responsible for someone else.
I am fine taking trains, beyond a slight nervousness at a and b subdvided platforms, but buses are a nightmare and unless I can be sure where they will stop or I have absolutely no alternative I will not get them.

Headfairy, we're a real mixture of age-levels. I can manage a Masters Degree Level conversation on topics I know really well, but put me in a room where there's a sandpit and some colouring crayons and watch me get totally engaged with joining in with the children and having enormous fun just doing something really simple for hours. I can discuss the finer points of business with professionals, but if I'm on a train with them and we're going past a field with sheep in it, I have to really struggle not to shout out "sheep!" and point and get overexcited which is Not A Good Thing To Do . In some ways it's like some (not all) of us stop at the emotional/physical skills level of a young child in some respects, but sometimes a child who has an amazing ability with words in some contexts (and not others).

My cousin is very similar, he's married and very settled yet sometimes he comes across as even older than I am but at other times he has almost childlike fascination with something to such an extend he'll focus right down on it to the exclusion of everyone one else.

amber - can I pick your brains about TV watching habits? DS likes to watch the same stuff or channels, very resistant to watching new ones at home. When out and about he is happy to watch whatever is on the screen - in shops etc. So I guess if he can control it, he feels he ought to, but if he can't control it (i.e. yell at me to put something else on!), he's fine. Any ideas what that's about?

Totalchaos, well, I'm very much the same, but it's not so much about control. At home,I know that I only have X amount of time to relax enough to build up the strength for the next set of scary events. Tele, especially a familiar programme or a favourite repeat, is brilliant. So much predictability.

Outside, we know that Anything Can Happen (and often does ) so at a certain age we know that we have to just put up with whatever is going on and wait, patiently as we can, for that magic moment when we're home and can do our routine again.

I guess when he's out, he's not really entirely watching the programme to relax. He's being polite, in his own way, and just waiting.

But at home, it's a need, a tool, a very much required way to survive. If it's not there, panic'll set in very fast indeed.

If one of my favourite tele programs starts a new series, I'm as excited as any small child could be, and if it gets to the end of the series, I'm really sad. But I'll watch anything that's on if it's at someone else's house, as it's polite to do so.

Er, does that help?