Aspergers/ASD support thread

Sarahsaver

Oh PN sorry to hear you had a bad day.

Well i am supposedly 'neurotypical' but I agree with you on the downs tests, I didnt have them and i looked at it totally logically. Also when i had a stroke i said to the doc who broke the news to me 'oh good it was not a brain tumour'.

Your family and friends ought to make the effort to understand your perspective.

At hospital yesterday when the nurse specialist said to my DS we have to keep a chart of what comes out when he wees, he said, 'what like penguins and stuff? or do you just mean wee?' He makes me so aware of what i say and also how much people leave for us to work out for ourselves.

the conversation between me and the nurse was accompanied by constant questions from DS, and when she asked him to be quiet i said 'he won't be you know this is what he needs to know' i was surprised that I managed to be so calm and assertive. then i told her about the ASD which she didnt know about as she was a wee specialist. I know this will happen more and i will have to stand up for my son so many times like that.

Carrera74

I really am grateful for your posts PN. They make me understand AS more which helps me with my son. He's not so good on the conversations either and gets very angry and frustrated when people don't understand that he just doesn't 'get it'. Even more so when the person who doesn't understand him is his Dad

Hope you're feeling okay today?

Carmina_Piranha_3

PN sorry you're having a bad day. i don't think you did anything wrong, actually - especially regarding the downs testing which was something anyone might have said to them.

just tell your friend you hope they have a good time, and try not to worry about upsetting other people. you can't get it right all the time.

the downs testing and somebody having stroke are highly emotive things, and people might just be more likely to get in a grump with you because they're in an emotional state themselves, it's not your fault. i am an evil cow when i get my period, and my son says i'm too grumpy with him

Sarahsaver

Carrera i have just been reading a book about ASD and it makes your problem clear. Your OH should realise thet your son CAN'T behave in a certain way. It is not that your OH cannot understand or adapt, he i an adult without ASD i presume so it is a case that he WON'T. it is so simple yet so fundemental.
Its like the Holland poem. You are NOT on the journey you expected you are on a different one, you have adapted but your OH has not. I hope he realises this soon cos it helps if you are all 'on side' i should know;)

fallen_angel_69

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability -to try to help people who have not shared that unique experience to understand it to imagine how it would feel

When you are going to have a baby it's like planning a fabulous vacation trip to Italy You buy the guide books make wonderful plan the colisseum the michaelangelo the gondolas You even learn some handy phrases Its all very exciting
After months of eager anticipation the day finally arrives you pack your bag and off you go Several hours later the plane lands The stewardess comes in and says WELCOME TO HOLLAND
Holland you say what do you mean Holland i signed up for Italy i supposed to be in Italy all my life i've dreamed of Italy
But there has been a change on flight plan they've landed in Holland and there you must stay
The important thing is they haven't taken you to a disgusting place full of famine and disease its just a different place
So you go out buy new guide books You learn a whole new language and you will meet a new group of people you would never have met
Its slower paced than Italy less flashy but after you have been there a while you catch your breath and look around you begin to notice Holland has tulips windmills Holland even has Rembrandts
But everyone is busy coming and going from Italy and they are all bragging about what a wonderful time they had there and for the rest of your life you will say yes that's where i was supposed to go Thats what i had planned
The pain of that loss will never go away because the dream of that loss is a very significant loss
But if you spend your life mourning that fact that you didn't get to Italy you may never be free to enjoy the very special the very lovely things about Holland


thought i would write it out dont know whether many people have a copy but we have mentioned the poem quite a lot over the last few pages

Sarahsaver

I am glad you posted that Fallen Angel

if you click on the number in the corner of the post it goes to single post view which makes it easier to print out as well;)

because of DS1 and also a miscarriage last year I think I have decided that with this pregnancy i am on a mystery tour

PasturesNew

I was brought up with nobody knowing what was wrong... just that something was wrong/different.

So I've spent my life being told off for not being like others. Being put down for the way I do things. Being made to feel bad for everything.

Nobody ever told me I was different. I never knew. I just knew that life was hard, frustrating, awkward.... and whenever I tried to express that I was told I was negative/it was just me/everybody managed/I must be useless.

So I plugged on, really putting effort into everything, but never achieving. Never knowing why. Never having a circle of friends. Alone.

Nobody told me why I was different. People have told me many times that I'm weird/odd/different, but without knowing there was a name to the difference you can just put it down to being "not like them" and people would drift off to have their type of life. Leaving me alone, hurt and confused.

Each time I'd keep trying at everything. Lose a job, get another. Always fighting my way through life. It has been like swimming through treacle.

And now I have a name for it. And it hurts that for 40 years I've been made to feel like poo about all this stuff. About what I did/didn't do. About what I think. About my opinion. Utter, utter poo. I've not been down about it, just plugged on .... and nobody would ever discuss with me why my viewpoint might be wrong or show me a different way. They'd just say "you're wrong" and walk, leaving me to it.

Now I have a name to it, it will make it easier.

But I'd like formal diagnosis before my parents die, so I can go to them and let them know it wasn't them, it wasn't me. It just was.

I've never had a relationship with my parents, it's been broken by this thing. I've never had a relationship with my siblings, it was broken by the thing. The thing that nobody could ever name. The thing I never knew existed.

Maybe, with a name to the thing, they can all stop making me feel so useless at everything.

I must have made their lives hell, not knowing that I was different. Trying to communicate. Not managing to.

Without a formal diagnosis I can't tell them. If I tried I'd be put down again, as "don't be so stupid" and they'd never forgive me, let me forget I mentioned it. So I need the bit of paper for closure. Before they die.

mandy.h_2

pn i know what u mean my dd is so much more accepting and forgiving of her brother now we have a reason for the way he is, im not saying she finds it any easier just understands more.

we are glad we got a diagnosis,my ds was that naughty child, awkward etc, but now i say no he has a condition and people dont know what to say.

my nephew has just come back of hols with father, his mum has said for years he had as but father was havin none of it, now after only two weeks he has had his lightbulb moment and agrees. pity its about 5 years to late eh

pn i think u r so brave still trying to interact alot of as people give up u must have some self belif to carry on your good efforts

mousytrap

Survived the orienteering with son last weekend. We chose the easiest course (which would normally be the one his age group would do by themselves) and we were back from the 1.7km in about 26 mins.

He trotted on ahead looking for the controls and was excellent at remembering which number he was looking for on them. He wasn't really paying much attention to the map that I was carrying, but then they were all at "track junction" and the like so nothing exciting to look at. Think we'll have to do the next course up from now on for training purposes otherwise I won't be able to tutor him much... and he needs to carry (and read) the map...

Also as of yesterday, have GPS will travel....

Did go looking for the first cache this afternoon (involving about 4 coordinates) and got to the site of the cache, then had to bail out and get to the school for 3pm. Might go back tomorrow for a closer look. Now that I know what I'm doing with the GPS (almost) I hope it will be doable having the kids along.

We got the Etrex H one. Buttons seem pretty stiff on the old fingers. Hope they ease up with wear...

mousy

NoahsPennilessMummy

Fallen angel thanks for that poem.....it just says it all really doesnt it:rolleyes:

I havent been on here for a while....still busy fighting with LEA to increase ds one to one hours to include afternoon as well as morning.

Been feeling sorry for myself over last week or so too as ds behaviour has been so hard to deal with and tiring.

he is up very early each day so I have to start my day then too....well its the night time still really:eek:

He is so loud all the time, he talks "at" me constantly about numbers and times and music and sings songs whilst flapping up and down.....if I try to get into a conversation with him he just shouts at me as I have interrupted his train of thought.

The school hol was unbearable as he was just loud like this all the time and there was no escape and I found this stressful and hard to deal with.
I am struggling as he gets older ( he is almost 5) to find things to do/days out which he enjoys or can deal with.

He hates sport ( he is dyspraxic as well as asd) as his co ordination is poor which doesnt lend itself to sport.....most of his schoolmates are into football etc and do that in hols......he cant cope with anything too busy and noisy either.

I feel like such a whinger at the mo and am sick of feeling sorry for myself.....almost 3 years since diagnosis and I am still feeling a lot of anger towards autism and what it has done to my boy and our life.
Recently I have felt myself dragged back into the "why me" train of thought and I so hate being there as it is a pointless place to go.

I love and adore my boy more than anything but sometimes it is all so hard.

Rant over:o