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People constantly giving me their 2 cents... ggrrr!(16 Posts)
Yesterday we had a few relatives (the in laws) at our house for my b/day. DS was interacting nicely, playing , going from one to one for attention,... well he was being very sociable.
So the comments started 'oh no we don't believe he 's ASD just look at him , he is enjoying himself,...' obviously i tell them they don't live with us to witness some of his oddities , and they start saying ' boys will be boys ,... lots of kids do that !...he 's only young "
Gee! That really makes me mad when they always try to rationalise /normalise ds'ASD behaviours. So i show them the paed 's report only to be met with 'that doesn't prove anything!' [hmmm]
It is i and dh and our older ds1 (16y) who look after ds2 (well mainly me ! ) so these relatives aren't there on a normal day to put up with ds'quirky ways , repetitive words, rituels at bedtime and dinertime, his non-cooperation and constant battles i face with dressing him , feeding him, bathing him ,...
These people have never read a single book and know nothing about ASD yet they think that they are qualified to make comments about ds and his problems .
Tipycal example , my sil is getting married in july and ds is to be her pageboy , i'm worried because i don't know how he will react to the church, the numerous guests many strangers, i don't even know if he will keep quiet and behave during the service. So i expressed my concerns , and said if ds doesn't behave at the wedding rehersal then we shouldn't have him as a pageboy.
sO SIL replies 'he'll be fine ,he 'll just follow all the other little bridemaids , he'll understand!' What the hell , they obviously don't know my ds very well...
I stop the rant now because i'm getting annoyed again just thinking about it
OMG! its like your living my life- my sil is a social worker and tells me theres nothing wrong with my dd even thou she has gdd SLD and told she has a mental age of 1.5 (shes 5). all i can say is bite your tongue and smile getting bothered is not gonna help anyone.
Oh yes, this is all very familiar!! My in-laws, despite no fewer than 5 eminent experts having diagnosed my DS as autistic, and despite his beautiful displaying of every single autistic trait in the book, still privately say "he's not autistic, he'll get there in the end". I think it's because he's affectionate, and because they've read so poorly round the subject, they think he can't therefore be autistic. I think you are quite right to be wary of the pageboy stuff - the whole point is that he won't just follow what the other kids do, that's precisely what an autisic kid won't do! It's a bit like my in-laws saying that my DS will start to eat a wider variety of foods if "he sees us all sitting down as a family eating those foods". Yeh, right, so as long we are all sat round the table he'll tuck into pate, caviare, lamb cutlets, peppered cabbage, potato dauphinoise.... It's a form of avoidance on their behalf, and we don't have the luxury of playing that game, as we live with the autism day to day!
my dad often asks " is she any better?" or she'll grow out of it! have to laugh or i'll cry
im so early days with all of this stuff, but admit I get comfort from the family telling me how normal they think dS1 is. In some way i KNOW that they do this to reassure me, to bolster my confidence. Because at this point - as I find myself over-analysing a behaviour which would not have bothered me last week - I very much feel the need to be reminded that he is a little boy first, and has ASD second. I dont know, it's a dfficult thing to address. They don't live with it, they see so much wondeful stuff, it must be much harder for them to accept. Perhaps a bit of denial, perhaps a bit of ignorance in understanding whay you actually need to hear in order to feel supported. Its a bit of a role-play perhaps? (mothers trying to comfort their chldren)
im lucky in that my mother-in-law has 40+ year experience as a physio fo kids with special needs (many of which are asd) so I take her words as words of someone with knowledge. But I also know that they are from someone who is a loving family member first, trying to find the words to soothed our freyed minds, so i cant help but take what tehy say with a pinch of salt.
I dont thnk it would go amiss to explain to family WHAT YOU WANT TO HEAR. They will give it to you if you tell them. And what you NEED to hear I suspect will change fom day to day, so totally agree with momof3monkeys - try not to let it bother you, they know not what tehy do, they tryng to make t better.
My family are at a bit of a loss how to deal with this. But i expect tehm to fogive the outbursts of of my emotional brain, so I try to do the same when they rub me the wrong way (as well as tell them in no uncertain terms that it rubbed me that way!!)
Re: wedding. I cant speak fo you but I would LOVE to see my DS 'follow the bidesmaids'!!! WOULD. NOT. HAPPEN. Perhaps explain to your sil a worse case scenario and explain how much worry that will cause you. Try to come to a happy medium of involvement, because your son should absolutely be involved... just maybe not on the taditional pageboy level. It should be on HIS level and it would be all the much more special for it. GOOD LUCK!!!!
mumofthreemonkeys my dad used to say things like that he actually asked if my son had "hurt his head" when he was a baby and that was why he had autism also at fils funeral i knew son would laugh no no they all said hell be fine guess who had to be taken out of church for his hysterical laughter??/??
I have been getting this for years, mostly ignore it now.
It is worse when it is teachers, especially teachers at my 6 year old hfa school. Apparently it is quite common for all the children of ds age to run out of the classroom to get outside to to add that particularly shiny pebble to his collection, at all times of the day, and to hide in the toilets, all kids with asd are just like other kids. He won't eat his lunch, the head teacher will sit next to him to prompt him, perfectly normal.
At the last meeting with senco, class teacher and headteacher, the autism outreach teacher was not amused, and I was relieved that someone with autism knowledge heard their rubbish. It was the best meeting ever with ds's school. I left not only knowing that I am right and the school are lying, but also that I now have a very powerful witness.
Thank you all , i see that i'm not alone with interfering well meaning relatives...
About the pageboy thing , i believe my ds will be out of his dephts... too many unknown faces at the ceremony, all the noise from the bells and the music, the chuch a new place surely will worry him, and i don't know if he will understand his role as pageboy, as for keeeping quiet and behaved ??? Hell he has no idea what a wedding ceremony is about anyway, even if we try to explain it to him he don't think he'll get that at this point in time.
Oh i forgot to say , last week sil brought his waistcoat and bowtie at my house for him to try on ...he kicked up because he didn't want to wear the bowtie! That's another problem all together...
@ nevergonnapost lol
i think people are just ignorant and a few years ago probably would have come out with some complety brainless comments to. we live and learn
my 6 year old NT (that means normal doesnt it?) nephew refused to wear the shirt and tie for a wedding he was one of the 'best men' at!! A pretty normal kid thing to do I suspect (yikes! im as bad as your in-laws!). Can one of teh bridesmaids he knows well hold his hand for the walking bit? Hopefully they dont expect him to stand silently near the front for half an hour! Surely your SIL does not want to be upstaged?
Bottom line is that he's your kid, your concern, so it is your decision as to what he can do in such an event. tell you SIL to 'take it or leave it' (not sure if the terminology i want to use there is proper MN decorum)
Hmm, it's complex i think.
Sometimes relatives are simply ignorant (you can equally apply all I am about to say to teachers / HCP's / interfering outsiders). Sometimes though they are at the denial stage of a grieving process themselves- after all, they also love the child and will very possbly go through the same process. Sometimes they have massive attitude issues- my ssiter, despite being in a childcare field, think disabled means no wakie /talkie abilities otherwise you're faking it. Okaaaaaay.....
i think sometimes also people think you want to hear 'oh it'snot that bad' and are trying to make you feel better.
We have a mix in our family, and I have to say the two people I am most likely to talk to are those (my nest mate and Mum) who simply accept it; my friend has a child with severe SEN so whilst she doesn't deal with DLA etc she does deal with the LEA so can empathise somewhat.
When I doubt ds1's sn- such as feeling guilty for accepting a aplce at SNU despite him loving it- Mum will tell mne quite cearly that it 'is obvious to anyone with half an unce of common sense that there is something not right with that boy' (I should add she means it lovingly, she is a great Nan).
Sister1's all-tosh approach causes me guilt and self doubt so i avoid her, however the ones that p me off most are FIL and MIL (not together, divorced a while back) who ask about 'poor' ds1 and whether he will be ok; he is decidedly NOT poor- he si loved and happy and cared for- and he will be OK if he gets access to services, but never NT. why on earth they expect us to look after their emotional need for reassuarnce I do not know, they never babysit or anything- I think they may need a lesson in who is the aprent in their relatinships with DH (massive issues around that, mind).
Oh yes, my mother's a bugger for this. She always used to say they'd be "fine" and "trust in <their name>" Like they were going to 'recover' through will power or something - for their autism and for ds1 erbs palsy. Strange woman.
I find making sure they see the behaviours works well. Can you pack your ds off to them for a couple of days?
Mum2fred- it means neurotypical, we don't do normal LOL. ASD is normal for ds1 / ds3 after all.
Your word on whether he is ready to be a pageboy (which most boys his age wouldn't be I suspect) should be absolutely final and not open to challenge.
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