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Original poster

Grandparents in denial about asd

79 replies

MangoMonster · 15/09/2011 19:35

anyone had family who refuse to accept a dx and still think your being neurotic? My parents basically think there's nothing different about ds and the doctors and I am wrong and stressing over nothing. Starting VB soon and I know they are going to have problems with being consistent as they want to indulge him at every opportunity and they are not very open minded and are very prone to sensitivity. Live very very close to them...

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StarlightMcKenzie · 15/09/2011 19:37

Oh yes. Because they have the luxury and their beliefs and decisions will not be to his detriment ultimately.

You don't have the luxury of denial. You need to get on with it.

Original poster
MangoMonster · 15/09/2011 19:42

I know, but I am a little stressed at the moment which they can see and they think I'm being ridiculous. I so wish incould be calm and not worried, I am sometimes but it's a rollercoaster right now and frankly it hurts when they tell me I'm not doing the best by him when I know I am, because at least I'm bloody trying.

They told me I should stop reading about asd as it's making me stressed. Why can't they see I'm only human and it's a phase, I will learn to cope better. It's only been 4 weeks.

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wasuup3000 · 15/09/2011 19:48

Take a break from them you are dealing with enough and need their support not their critism.

Original poster
MangoMonster · 15/09/2011 19:50

Thanks, easier said then done, they live next door, so I can help them out.

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StarlightMcKenzie · 15/09/2011 19:51

The only person you have to prove yourself to is your ds.

The rest will come on board in their own time, and if they don't you'll stop caring about it.

I didn't realise it had only been 4 weeks. So sorry. This is the absolute worst bit. I know that because I remember clearly how I felt, but I am 2 years on and look back at my first few weeks and honestly wonder what on earth I was on about because it isn't THAT bad.

I went to a NAS meeting and told the organiser that we had just had a dx, and had the most miserable face. She replied 'It isn't the worst thing' and I wanted to gorge her eyes out. But I agree with her now.

StarlightMcKenzie · 15/09/2011 19:55

Oh lordy. In-denial Grandparents living next door.

The making of a comedy sketch - not.

Stay in control and determined. You'll earn their respect that way.

Just look at the bright side though - you avoid all those envelopes on your doormat that contain 'helpful' newspaper clipings about asd being caused by too much tv/microwave food/carpet cleaner - whatever.

And, actually, they might agree with your much sooner than inlaws that only see the child once in a blue moon.

Original poster
MangoMonster · 15/09/2011 19:56

I know it will get better, but feel annoyed with myself for not coping and being happy clappy all the time. So it really hurts when you are berated for it. Really hope the VB gives some positivity.

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Original poster
MangoMonster · 15/09/2011 19:58

It is a comedy sketch and can be very surreal! I just have to keep my feelings and temper in check...

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Original poster
MangoMonster · 15/09/2011 20:05

Thanks starlight, you always come across so reassuring. This board wouldn't be as good without all your advice and the time to take to help people.

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colditz · 15/09/2011 20:08

My Uncle knows Ds1 isn't Autistic, because, you see, he's seen autistic children, and Ds1 is too happy to be autistic.

The frightening bit?

He's an education consultant in America.

Original poster
MangoMonster · 15/09/2011 20:15

My dad has said the exact same thing... And he's a retired consultant :(

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Original poster
MangoMonster · 15/09/2011 20:16

That's why i don't have a leg to stand on and he has little faith in doctors.

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StarlightMcKenzie · 15/09/2011 20:18

My Dad was a teacher trainer.

On hearing the news he said 'good, it is better to be different and find your niche than a boring conformist' which was well-intentioned but infuriating all the same.

StarlightMcKenzie · 15/09/2011 20:22

Thanks for your comment Magno. I can assure you that I don't post for altruistic purposes. You lot keep me sane and regulated so that I am safe to go out into the world, and being brave enough to give advice means I sometimes have it challenged which makes me a better advocate for ds.

Also, people on here are a fiesty bunch and do take on board suggestions so for once I am not banging my head against a brick wall.

I like to think I'm nice as well though Grin.

Ponders · 15/09/2011 20:35

I can recommend doing a search for posts by jimjams, in SN but also other topics

\link{http://www.mumsnet.com/Talk/special_needs/20906-does-anyone-else-feel-totally-responsible-to-find-the-best/AllOnOnePage#527481\her MIL used to be a nightmare} - jj generally managed to laugh about it but I think I would have killed her (repeatedly)

actually there are quite a lot of posts on that particular thread you might find reassuring, I think, MM Smile

Original poster
MangoMonster · 15/09/2011 20:42

I just feel like SN is such a hidden world and I had no clue about it till recently. I've learnt so much from reading posts and talking to other mums in rl. I do feel as if everyone wants to brush it under the carpet, without realising how many children are affected and could be helped in simple ways. It's a shock and an eye opener. I guess I thought I'd never have to understand it and couldn't before, as it's really difficult to understand unless you've had some experience first hand. It's so unbelievably difficult to explain to people, so I haven't bothered, but kind of have to persevere with family, although maybe they just aren't ready yet.

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Original poster
MangoMonster · 15/09/2011 20:43

Thanks ponders, will do.

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silverfrog · 15/09/2011 20:44

my PIL do now (4.5 years after dx!) accept that dd1 is ASD. but they don't get it. and htey think we pander to her, and let our lives be run by her etc.

it is very wearing. andI get all the clippings in thepost too (last one was actually quite interesting - what MIL is doing reading the New Scientist I'll never know (really not her thing) but there you go - maybe she is trying to help, in her own way)

how old is your ds, Mango?

be kind to yourself. th eepriod just after dx is a tough one. you've just had your fears recognised and validated, and on one hand you are happy that you are not a neurotic parent, but on the other you are faced with so much uncertainty.

but it passes.

and we have all been through it here. come and rant at us Smile

Original poster
MangoMonster · 15/09/2011 20:52

He's 2 next month. Sent off his card to cbeebies today, hope they show it, although he probably won't realise, but I'll video it and he'll know that we weren't just stressing about his eye and asd but trying to make his childhood fun!

It's almost a catch 22, you don't want people to agree but you do at he same time... Crazy. I've already had new scientist from one relative and Christian beliefs from another...Both meaning well, but I can't say it's helped yet.

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StarlightMcKenzie · 15/09/2011 20:59

I've got Steiner relatives!

Top Trumps? Grin

StarlightMcKenzie · 15/09/2011 21:01

I think they show all the cards online now, if they don't show them on the TV.

Boy am I so glad I'm not where you are now. You've done so well though. He's young. You've taken control and got some decent intervention happening. Take some time soon to focus on yourself. You sound really sensible and switched on so you'll understand it is a marathon not a sprint, and it need pacing and planning.

graciousenid · 15/09/2011 21:09

MIL (ex nanny, nursery nurse & childminder) thinks there is absolutely no issue at all with ds - he's just a bit quiet. The diagnosis came about because of my need for attention & ABA is a massive vanity exercise on my part.

My parents accept the diagnosis but have this blind faith/magical thinking belief that ds will be fine & he will get married have job etc. On a good day I appreciate the optimism, typically I find it draining tbh.

I think it is par for the course unfortunately.

Original poster
MangoMonster · 15/09/2011 21:14

Don't know what Steiner is? Tried looking it up but...

I know it will get better and just got to keep focussed! My dp is amazing but works too hard, hence me being mn. Dreading tomorrow and trying to smooth things over. Plus my sister made a comment about me wearing jogging bottoms and not proper clothes! Apparently I'm letting myself go! Ha ha. If only I had the capacity to worry what I looked like. Sometimes I feel like I'm on a different wave length. Feel like someone should shoot me right now! But I know it always seems worse at night and tomorrow I'll be better.

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Original poster
MangoMonster · 15/09/2011 21:18

gracious thanks for your post. I feel like they think I'm doing ABA because not capable of teaching my ds myself, which I guess is why they ate dissapointed in me.

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StarlightMcKenzie · 15/09/2011 21:24

From this site but MN might delete this post as the gnomes roam and threaten...........

The role of the Steiner kindergarten teacher is to facilitate the ?incarnation? of the spirits and souls of children into their physical bodies. If there is here a philosophy that the EYFS guidelines might ?breach?: in our direct experience the significance and implications of this philosophy are inadequately understood by most Steiner parents. Teachers, if pressed, may repeat that ?Anthroposophy is not taught to the children? but this is disingenuous or naive. The transmission of Anthroposophy is subtle, through verses, stories and images. Every aspect of Steiner education is informed by Steiner?s clairvoyant ?insight? or ?intuition? and has occult implications. Thus the Waldorf categorisation of children according to their ?temperaments? and their ?soul type?, school readiness linked to the ?change of teeth?, the dance form eurythmy, the oddly uniform artwork, the gnomes (or elementals) and the faceless dolls, are all embodiments of the anthroposophical impulse.

Labeling of children according to a spurious philosophy could be seen as insignificant were it not for the pedagogical response of those Steiner teachers who, instead of acknowledging a child?s real, individual emotions and behaviour, respond to body-type, hair colour, gait and ?humour? in formulaic (occult) and potentially detrimental ways.