Grrr!!!...these relatives always making stupid comments!

[mysonben]

Sorry for the rant but i need to vent...
Just got off the phone with my sis who lives in france , and hasn't seen my ds since march!

I told her , dh and i have decided to go for a formal written dx if that is what the paed recommends (some of you may know we have a paed appointment next week for ds 'asd).

She starts by saying we are wrong to want to label our ds, because he looks so normal, and his difficulties are mild,... wtf!!!
(Yes we know he is mild but she doesn't live with him to see his struggles sometimes.)

Then she goes on by saying that i analyse and scrutinise ALL of ds 's behaviours and put EVERY little thing down to his asd.
Then she goes on saying "oh my dd does this and that too!" and "my dd doesn't always understand what we say to her and she hasn't got asd!"
Maybe but her dd is nt and not yet 2 years old ffs!
My ds is 4 in three months!
How dare she compare the two of them.

And i do not analyse my ds' every move , maybe i did that for the first month after the verbal dx , because i was trying to make sense of it all and that was my way of trying to cope.
But i am much more relaxed concerning his quirky ways now, besides she hasn't even seen us since the dx back in april so how can she make assumptions like this from 800 miles away!

I'll stop now...sorry for the moan, i'm just so cross with the arrogance of some people who do not even understand my ds , asd and our situation.

Oh, I so understand what you mean. I had to send out a family email in July after a very unpleasant incident at a reunion.

I got a few really sweet replies but the main person involved has not responded so I feel like I wasted my effort on him. It's so difficult to get people to understand what day to day living is like when they only see a snapshot. And unfortunately that snapshot can vary tremendously depending on how our kids happen to feel that day. So the person thinks either that we are totally OTT paranoid parents and the child is really normal or that we are really BAD parents and our kid is out of control

dd is being seen by a paed. who has said that adhd seems 'highly likely' and is just holding off a final verdict to see how dd settles into new school term (we moved last year, so just 'double checking').
when i was home visiting rellies, they all seemed inclined to talk me out of it. they just seem to think that if they say she's bouncy & high spirited then somehow it matters less than if she has a dx. personally, i want her assessed properly, so i know how best to raise her.

i think that some people, iwth the best of intentions, try to make you feel better by trying to minimise any problems.

funny how, after a couple of days in her company, they start to see my point ...

I feel for you MSB. I'm sick of people saying 'but he seems so normal' and 'oh all kids do those things'. Pisses me right off. Are they Developmental Paediatricians? ARrggghhh.

My fave comment is from my dad who says "there's nothing with him, its the rest of the world thats wrong".......super, thanks for that

Hi mysonben

I get this too. My ds deffo has problems but people always want to convince you there are either minor or temporary. I know there are trying to reasure but it desn't help. And it makes me because it implies that if the problems are serious and permanent (which I suspect)that it is even bigger a deal and something to be really depressed about iyswim rather than just the way my lovely ds is.

On the other hand my friend did rightly point out that I sometimes over analyse ds' problems. My ds can (after a lot of proactice take off his velcro fastened shoes) her same age nt ones can't (she's not taught them). She says if it were the other way round then i'd be thinking it was cos of his problems.

sorry garbled but baby dd has woken and is howling
xx

I have a friend who over empathises - I think its her way of trying to 'normalise' things and make me feel better. Sometimes there is some relevence. A lot of the times it is irritating

I quite like that comment off yr dad Barmymummy. I find a lot of wrongness in stinky attitudes and assumptions and gawping and judging..

Sorry this turned into a rant! Its funny how so many people want to play it down and reassure you isn't it. My parents and sister have been great but extended family useless. My Mum plucked up the courage to tell my Gran about DS3's diagnosis of ASD - Gran is coping with my aunt's recent cancer diagnosis, elderly and fragile so it was the last thing she needed - but she took it on board, although very upset etc - only for my cousin who works as a receptionist at a GP surgery and therefore the oracle of everything medical to tell my Gran the diagnosis was effectively bull*t because "they can't tell at 2, they are too young". Grrrr. DS3 talked from 8 months to 26 months then stopped. How can this be confused as being normal? As if we would put my Gran through it if we weren't sure. Then our friend came to visit allegedly to be supportive but then when we explained about starting ABA yapped on about how this was just a difficult "transition" for DS and that I should trust my natural parenting instincts and he would just move on "in his own time" and if he wanted to do the same thing over and over then just let him and he would move on when he was ready - that this was what they did with the kids at the pre school she worked at - and then looked at our bookshelf full of books about different therapies etc and seized on a title about "recovery" and basically how much she hated this idea of "cure" and "recovery" and implied that just because I had a book with this word in the title (in fact the first page disputes the theory of recovery) that I was unaccepting of DS and his autism, when this was just an inherent part of DS I was denying etc etc at which time I yelled "the psychologist says something has gone wrong with his brain". DS3's regression was about as severe as if he had suffered a head injury and brain damage, I mean he talked for 18 months and interacted and pointed and shared and had friends at nursery ffs, I have the photos and the videos. Of course we accept who he is now as any parent with an injured child would because we love him whatever and we are getting to know this "new" boy, but because he has regressive type ASD his personality is completely different. If he had suffered a physical injury and been in hospital etc everyone's attitude would be totally different but because its autism and subtle and he has no physical scars somehow either its all in our imagination or it is real but we are "in denial" or "unaccepting" and trying to change who he inherently is. Her advice was based on a friend with a child with Aspergers - he did not have a language delay and is very high functioning - I should have told her we decided on ABA when I picked DS out of his cot to find it was full of congealed lumps of vomit - he had not called for me, or cried, he could not tell me he needed me. But by that point I had to leave the room! ABA has got to be better than choking on your own vomit right?

Thank you ladies for replying.

I don't think we will ever change some people attitude, sometimes they are well meaning but because of lack of knowledge they put their foot in it, sometimes they are just plain and simple ignoramuses!
And until they find themselves in the same situation as us mums and dads of sn children, then they just will not get the point.

Maybe i should sent DS on a little vacation at my sister's house, her stinking attitude would definately change after a couple of days!!!

i have a very dear, but very stupid friend who once accused me of keeping dd4 "like a baby", because i wont have any more ! - yeah right love .... like i said , she's stupid.... she also has said that dd4 will grow out of it, as there is no such thing as autism,... that aliens have abductuded her once, then brought her back,(probably got fed up with her talking shite according to dh) and that you can lose wieght by thinking ( she's a paul mckenna fan) ..... shes also a scientologist... .... its annoying , but as shes generally a loon anyway i let it slide!

I admire your patience drlove8 - if anyone suggested to me that DS's autism didn't exist, I would very likely explode.

We're further down the road- ds1 was dx'd in 2006 although we've ahd another since- and those who can't accept it have been alrgely remoed from our lives. MIL is one of those; one might feel it's harsh but we'd accepted years of shit, for her to call ds1 a freeak was it though. Also my sister who works in childcare and refers to the boys as 'not properly disabled'- what would it tkae ffs? A dx, statement for one and SNU place for t'other- she's of the if they can walk they're OK type though.

We didn't decide to cut her out, its just life moves you in opposite directions and tbh it's not been a bad thing. You have to move on and people that can't deal either have to make an effort to keep up or be left behind.

I think its generally a lack of education about asd/ learning difficulties that are behind the stupid comments.... A bit like the people who comment on us parking in disabled bays, even though we have blue badges and are entitled to use them....
If your not in a wheelchair then there is nothing visually to point out a diability to a lot of people.
The ignorence is like the racism that was widespread in the 1950', (not that it makes it less disturbing or wrong)-some people do simply do not know any better. education is the answer imho....
Not nearly enough is done to get the message across. people who have disabilities are still people , they and their families have feelings just like everyone else , and those who voice stupid comments would be better keeping silent.

My DS doesnt have ASD. He has developmental delay. I have had friends tell me for years that 'he is fine' 'nothing wrong with him'. Its almost like they think you are doing your child a deservice and being horrible for suggesting your child is not 'perfect'.

Sometimes I think people are kindly trying to reassure us that everything is ok. Unfortunately it sounds like they are minimising the problems our DCs face or accusing us of being neurotic.

As if there is not enough uncertainty and guilt already attached to having a child with SN.

Quite a few times I have heard 'oh my DC does that or cant do that' and I have to point out that their DC is 3 years younger than mine!

MSB, I soooooo know how you feel.

My own mother accused me of keeping DS2 in nappies on purpose "so I can get more DLA"

My BIL as well, only comes up to ours 4 times a year, and every time he sees ds2 he talks to him very slowly and loudly (imagine something off Faulty Towers).

I remember you saying a few times she has made such offhand comments about your DS. At least you don't have to see her that often with her living in France though!

peachy 'freak' would do it for me - as would anyone questioning the dx. It's stupid. We've had a relative recently who hasn't seen DS in 6 months suggest that maybe he's just a bit "quiet" - yeah, right, zero language at 2.2, and a whole host of other symptoms... quiet...?! Putting aside the whole paediatrician dx thing.

Mumslife - you're right about the ignorance and Drlove you're right about the racism comparison - funny have said a number of times recently, that I could get quite political about this.

Oh, I am so glad you started this thread, MSB. I have just been talking about this very subject to dh.

We were at the PIL earlier. DD (8) has AS and she is really stressed and anxious at the minute. She was really out of sorts and I was talking to MIL about how tough dd is finding things lately.

Among her pearls of wisdom were : 'she's probably just needing an early night', 'maybe she's bored' (when dd was curled in a ball, rocking) and my personal favourite 'there's nothing wrong with her talking to herself all the time - I do it sometimes'

Despite them reading all of the relevent reports, they still think it doesn't exist or that it will go away. Makes me

You are all right.
We all are or have had to put up with stupid hurtful comments on top of dealing with our dc difficulties, our own feelings,...

I'm not saying everyone should become knowledgeable about every disability or disorder there is around (it would be nice though! ), but relatives and close friends once they know our dc have been given a dx, or there is evidence and suspicions of asd or another problem, well they should at least educate themselves a bit before making comments about things they know nothing of , or at the very least shut their mouth if they have nothing nice or supportive to say.

I don't look for sympaty from my sister , it wouldn't help me or my ds if she said "oh you poor thing, he has asd!".
No what i want is a bit of respect for my and DH 's decisions regarding ds' problems, and a bit of understanding that it isn't always easy. But she will not give us any support, so next time she starts i will tell her to get stuffed!

No doubt she will call next week to "see" what "bad decisions" we have taken with the paediatrician.

mysonben ....i hope it goes well for your appointment....

Drlove8, thanks.
I'm worried about it, the app. is on the 12th, because i know she has all the reports on observations of DS , and they are not good news, every single one (they are 3) points to asd, and i'm so sure she will want ds to be formally assessed.
We are dreading it but will do it if it is deemed necssary.
Will update on that next week.

hmm, well i keep getting the old chestnut of 'adhd didn't exist when i was younger' and 'they're so keen to label children nowadays'
yes, well, believe it or not, it's called PROGRESS when 'they' (doctors) develop new understanding of why some children struggle more than others. and they're not like some model agency, lurking outside top shop looking for the next 'big thing', doctors only assess & diagnose those who need the help.
sorry, rant over. had a bad day. dd 'only' appears to have adhd, and not v badly, but today was hard work for everyone who met her, and well done to the swimming teacher & lady in the shop, who just dealt with her and didn't get angry!

some adults are able to educate themselves & know how to be helpful.