If you had an autistic child would you feel offended if he/she was not invited to a birthday party of a child you know

[TartWithAHeart]

Well would you?

..really rambling now...
When DS1 started school I ordered his clothes labels. And I thought I would be really organized for once and ordered DS2's at the same time as he, of course, would be going to the same school.
Several years later I found those labels in a drawer still bound up together. I just sat and cried. I cried at my stupid expectation that I was somehow entitled to a normal life. I cried at the realisation that something so little was changed - my DS2 didn't need 'ordinary' name tags. He needed his first name written in big letters so he can stand a chance of reading it. I cried at my arrogance at all those years saying why me when the truth is why not me.

I still keep them in the drawer as a reminder that we have no idea what life will bring and that you have to seek normality in your life somehow and that way you find some joy. And this year I took some and sewed them in his PE kit because he can read them now. So they remind me that things DO get better.

i have tears in my eyes.

I bought finger paints for tom when he was 6 months old...you know...EVERY BABY LOVES FINGERPAINTS....thats what the books say.

But HE SCREAMED when we tried to do those 'cute' little foot/hand prints that i wanted to frame.

now...13 years later...and he still hates touching anything 'messy'...i look at those paints (yes...like your labels i have kept them as a reminder) with thoughts of what i thought we'd do together.

but at least now i understand the 'sensory' isssues he has...and no longer look at those paints feeling i failed...

last year he had to make bread at school and refused to knead the dough!!!! luckily...teacher didn't notice...and we (being great parents!!!) sat down to eat 'Lead Bread' for tea!

TWAH - I am sure your friend will appreciate your invitation and efforts.

And yes, I agree it was quite brave to come back on this thread after so many attacks (mine included).

Unfortunately I think that was the inevitable outcome of asking the question to a group of parents who live your friend's reality every day.

mummytojess it's here autism every day Scroll down to the 13 minute movie.

I know exactly what you mean pagwatch. We have some video of us with ds1 as a baby talking about 'when he grows up' etc. Makes me cringe now.

Pagwatch thanks for being so candid.

As for the statement "people like TARTWITHAHEART " MissesF, you don't know me and surely by judging me in this way you are doing the very same thing that I have been accused of doing. The difference between me and the women at the school gate is that they might think it and then look away, or ignore - but I will think it and have the discussion - is that so wrong. I am after all only human.

I am not here to defend myself for having an NT child, or for you to unconsciously project their own despair about having SN children into destructive fantasies about my child being involved in a car accident/or being rendered disabled .

TWAH the thing that made me gasp about your question, wasn't the actual question it was all the little things that you believed that you let slip in (mainly on the MMR thread). Such as the mother over policing her child (she probably has no choice), not liking destruction (destruction can be autism to a tee), searching for a 'cure' (very normal when your child is diagnosed with a devastating condition- and in fact it's my opinion that often people aren;t searching for a cure they're searching for speech- not realising its not the same thing- and nothing wrong with that- I stil search for speech for my 8 year old), complaining because the mother talks about her son too much and is always over analysing every positive thing he does, assuming that she's barking mad for not giving an MMR booster.

Now of course you can word it out loud as you try and work it out, but if you do it on a board where there are mothers who have destrucitve, non-verbal children, who've lost loads of friends because those so called friends couldn't cope with the difficulties that surround autism then you are opening yourself to people disagreeing strongly with you.

When you start out in autism as a mother you get blamed for everything. I was blamed for my son not talking, saying that needed SALT got me landed with an 'in denial' label -despite the fact that I queried autism 2 years before his eventual diagnosis, was also accused of over stating his problems when he was younger (so under and over stating at the same time ). It is so easy to blame the mother - right at a time when the bottom has fallen out of their world.

You maynot have meant your posts to sound the way they did - but they did sound as if you thoguth the child was a bit of a right off and the mother should stop whinging and just get on with it. Sorry but that's how I read them.

I;d really really recommend the film. It will show you your friends world.

TWAH I reallt think you misunderstood the car crash thing- the poster was likening the pain of a dx as the same as watching a really slow car crash (she's right, it is like that)- certainly not wishing a car crash on anyone.

It is true though that any of us with a NT child (I have one, I hope to ahve 2 in a few months!), could be catapulted into the sn world at any poijnt. It does happen, awfult hough it is.

DS never gets invited to parties and they haven't even added "autism" to his extensive list of SNs yet.. although no doubt they will at some stage...

Yes I'd be very hurt.. sorry but I would. The hurt I feel is for DS.. even though he's not really aware of the whole "birthday party culture." Yes he is noisy, somewhat destructive, and does "inappropriate things".. but I'd be with him.. I can never understand why the parents can't see that there is no way I'd just dump him on the door step and leave them to handle him.. I would have thought that was obvious.

And DS loves parties.

People don't seem to let their children come to his parties either. Most don't even RSVP. Two years in a row we sat at a play centre waiting for his school friends to arrive... and none of them did. Thank God for our family and friends who would never let him down. But I had to pay for 10 anyway. I felt stupid the second year in a row.. I had hoped the first year had been a fluke.

We tend to just have family parties at home now.

None???? Jesus god.

None indeed. Perhaps it's that he goes to mainstream school (with SN unit) in a different town to most of them. But it's only a 15 min drive away.

I'd have bloody driven them here myself if I'd have thought that was the problem!

The mainstream thing is probably relevent. Most of the parents are probably afraid of his obvious disabilities.

Yes your're right Gess. But then - I know nothing very little about autism, apart from what I have seen of FDS's behaviour.

I could have asked the ? - "would you invite a destructive child whose mother can't control him to your party" - but that would not then have tackled the implications about the potential exclusion of someone just because of their ASD.

I don't expect people to agree with me - but to have the discussion without making insinuations about my personality - I wonder whether this was a face to face conversation would people be so blatantly rude. And I am absolutely shocked and disgusted about the "car accident" remark - the implication was that it would serve me right if it happened to me - then I would understand. I firmly believe that understanding comes from discourse - not from hurling horrible, horrible insults at people.

I have just watched the film. Thanks for the link. It's very moving.

That's awful behaviour Shiny.

TWAH - having a child of the same age, and going through the diagnostic process, it is easy for me to identify (or possibly over-identify!) with your friend - it is a really mind f*ck, you can get a bit preoccupied by your child, their problems, and their futre.

TWAH
You really did misunderstand my comments. I was talking entirely about trying to desribe what happened to my child in terms that someone outside that experience would understand.
If I had said it was a 'kick in the stomach' would you have desribed my expression as

"...destructive fantasies about my child being " kicked in the stomach?

Seriously. Read it again. My post was about how incredibly hard it is to make others understand the impact of autism AND how hard it genuinely is for others outside because nothing really compares.

SHPHH - that's just terrible. And just what I mean in my earlier post about people thinking something or ignoring but not having the discussion to find out more.

I think you've misinterpreted the car crash remark. It;s just a description of how everything you had goes overnight. All your hopes and dreams. It's not wishing it on you at all. It's just a way of trying to demonstrate how you might feel in her shoes (it's easier to imagine isn't it- seems more in read for all of us).

FWIW that did happen to my friend's sister when she was 18 or 19. Whole life ahead of her to one where she'll need lifetime care.

There is a saying that disability is only a car crash away for all of us. I think it's just designed to remind people that no-one is immune to disability. I think I thought I was until we had ds1. I suspect most people do.

Seriously
How do you get from
"it is like your child has a car accident"
to
" I really hope your child has a car accident" ?
I know you are cross but not once have I attacked you in any way at all. Your comments and your interpretation of my remarks are extraordinary. I was actually agreeing that it is hard to understand when you are not in it.
You are attacking the wrong person and for the wrong reason.

Diagnosis is like a car crash really isn't it. I did feel physically bruised after it. Even though we'd expected it for over a year (and had been told there was nothing wrong with ds1), when the consultant we saw about something else said we needed to go back to looking at autism I ended up on the floor literally. I remember dropping everything and doing this ridiclous over dramatic 'losing it' routine, sobbing at the feet of the consultant . God would never want to go through that again! I was quite composed by the time we got the actual dx a year or so later (just went home and blubbed!).

Well obviously a bit wary of the description now - but that was how it seemed to me .
Your diagnostic moment was different to mine poor you . I had my fall apart at anothertime.

I am pretty oblivious to others discomfort about my DS's gains though. Happy to tell alost anyone " x can do this now, couldn't do that before - isn't he brilliant "..poor postman/shop assistant/teacher/man in coffee shop etc

ALMOST (tut - spelling/typing )

Dh says he remembers the trip back from that losing it consultation really vividy. We had to take a taxi, then train then taxi - he said I just stared out the window silently crying the whole way home. I think I thought I was in a film

I was hormonal- had only given birth to ds2 2 weeks previously, so I think I was leaking milk and feeling like I needed to feed him & ds1 had gone barking following his birth.

God it was a dreadful time!

Do you know the thing I found hardest though? Was when dh had his losing it moment. Still makes me shiver to think of it. Could deal with my grief, but hated seeing his so raw.

Oh Gess...

I have mental chunks of "dreadful times" stored away in my memory that are just too painful to think about. The other day we were watching a home video of DS early weeks in SCBU round my dad's (can't watch it at home since the DS in question fed coins into the VCR and it died a noisy death ) and it brought so much back. I played it all over in my head for days.

What was his like Gess? If you don't mind my asking..

Men are scary.. because they don't "deal with" things as they come along.. so their "losing moments" seem to bite on the ass when you least expect it! And if the DH is the rock you cling to, that's very scary..