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A bit of self pity here... so fed up! (sorry rant!)

(13 Posts)
mysonben Mon 29-Jun-09 23:22:42

With feeling i have to constantly defend my position as to why we are seeking help with a senco at ds' nursery , possibly a formal dx from the paed ( have had verbal dx of asd for ds) , speech therapy ...
People who only see a bit of ds, now and then , who have seen him interacting quite well with a child or two , who have played a game or two games with ds , suddenly think they know all there is to know about ds.
They question everything i say about some of ds' quirky behaviours aand routines, almost to the point that i feel like they think i'm making it up. It really make me want to cry at times. And when ds does reverts to covering his ears at the flush of the toilet , or doesn't make any senses when he 's talking, or toe-walk stimming across the room, or goes into a frenzy because he wants to shut all the doors in the house and i say no, ...well the list could go on! At these moments i WISH these people were here with us to see it and deal with it.

People have the knack of making me feel bad about seeking help for ds , in their eyes he is normal , all of his behaviours they have a good answer for ... attention seeking, ds is playing us up , normal toddler tantrum,... boys will be boys! YKWIM?

Why do they assume that they know our child better than us! Apparently even ds ' nursery is exaggerate his'problems" with socialising because these people have seen ds playing /talking to a child or two so he 's not asd , definately not!

sad and depressed tonight again.

MatNanPlus Mon 29-Jun-09 23:34:51

Sorry your feeling tonight mysonben you know your child and try to keep that at the front of your mind, tune them out, sometimes i think people have this attitude as they just can't comprehend the alternative ie SN.


TotalChaos Tue 30-Jun-09 00:29:05

people think they mean well and are doing you a favour by "normalising" your DS behaviour - they sound extremely persistent though given you've had a verbal DX from a paed. I would avoid as far as possible discussing the whole ASD issue with people who aren't wholly supportive, you've enough on your plate without trying to explain ASD and the assessment procedure to people who don't want to take in the info.

lingle Tue 30-Jun-09 09:18:55

hi mysonben, sorry you are going through this.

Does your son have a receptive language delay? People seem to find the idea of a delay in understanding language, with consequent effects on behaviour, far far easier to understand. If he has other main "symptoms" you might again find it easier to describe his problems (eg motor skills, sensory issues) one by one (when the need arises). You could then say it's part of his ASD once they've grasped the issue.

madwomanintheattic Tue 30-Jun-09 09:52:00

were you the poster with the 'telephone dx'? apols if not, sorry - i get v confused blush
i think tc is right - they are just doing the usual 'normalising' routine, and if you were the telephone lady, maybe they are just gently trying to get you to see other viewpoints and pointing out the positives.

we had a lot of people (including the paed at the cdc) doing a lot of pointing out the positives - it's quite nice when you turn up and they all coo and say how fantastic your child is, but behind that they are still writing up the 'issues' and getting a dx together. it's quite normal for profs to watch and wait for a couple years before coming to a conclusion - unfortunate, but that does tend to be the way it goes (particularly for chldren who do cope better in 'settings' and then boil over at home as a result).

you'll get there. the best thing to do is to take the heat off yourself for a week or two and then try again.

a friend of mine has a son who copes at school, and so has had years of ed not bothering, but has a good relationship with the paed, who helps with the home side. if he is coping in the setting and getting the slt etc he needs, maybe leave school/ senco for a while - you can get your points across at transition to yr r if you need to, and you may have a dx by then.

TotalChaos Tue 30-Jun-09 10:03:50

madwoman - no, it's a different poster. danger of going down the language delay explanation route is - you then get all the stories of people's kids who had speech therapy - and it almost invariably turns out these kids didn't have any receptive delays, most often just a mild pronunication problem.

mysonben - is it family members you are having these problems with?

hereidrawtheline Tue 30-Jun-09 10:19:49

I was the poster with the "telephone DX"

And I sympathise with you mysonben very much we have had this a lot too, although somewhat less lately. It is horrible because you dont want to feel you are trying to "force" there to be something wrong, and you dont want to be misunderstood but you dont get the support you need. I dont have too much helpful to add just wanted to say I understand.

madwomanintheattic Tue 30-Jun-09 10:30:40

sorry ladies! grin

have you got everyone on board now hereidraw?

same-ish answer though - it does take time until everyone is willing to understand. dd2's nursery were all fine and supportive, but it still took them nearly two years to experience a full on sensory meltdown, (they knew how to deal with local and routine triggers like the stroy tape lol, and had got a bit blase). i had warned them and warned them about triggers (and actually pointed out that this one was going to occur). in the end i left them to it, and they were totalled. i did get an apology (and an 'we've never seen anything like it' lol) i bit my tongue.

sometimes you have no option but to bide your time a little. it's frustrating, but in the long run you can't rush some things...

hereidrawtheline Tue 30-Jun-09 10:36:11

we are in the middle of CAHMS/pead assessment now but most of the time DS is quite obviously not NT & his nursery are reporting problems too. Still if someone didnt see a lot of him and caught him on a good day then it would not be obvious at all.

madwomanintheattic Tue 30-Jun-09 10:39:02

so tricky - are nursery giving him additional support pre-dx though?

hope it is all straightforward.

mysonben Tue 30-Jun-09 13:51:38

Hi ladies. Had a busy morning so only just logged on this minute,
Yes ds has receptive and expressive language delay, the SALT lady explained it's not quite a delay she called it 'semantic/pragmatic language disorder'.
Some family members are still in denial over ds'dx and are indeed making comments sometimes. But my grumpiness of yesterday was with some things my neighbours said.
We get on well and they are lovely , the thing they worked a few years ago with sn children , some of which had autism.
When they moved in next door ds was only 15 months , and as time went on i got more worried over his lack of speech, so my neighbour offered to help him through play by using makaton, She lend me a few books,... so in a way ds 'problems have always been in the open with them. But since we got the dx last april , my neighbour doesn't really agree with it because she says he is too responsive ,or didn't cover his ears when flushing the loo at her place,... well they tend to sort of dismiss the concerns we have here and at nursery with the way ds behaves.
This leave me feeling like i'm being neurotic over nothing (although they 've never hinted this) it's the way they always go on about all the normal things ds can do, and they think his nursery only look at the negatives points about him.
My point is they don't live with him or go to his nursery to see how he is there so...!!!
I end up keeping it all in and then i get so worked up over the comments and analysis off ds. Kwim?
Thanks for reading ladies.

misscutandstick Tue 30-Jun-09 14:19:01

Actually i was just going to do a bit of venting on this exact problem!

DS4 has had a written DX (admittedly by a Paed who hands labels out like they're post-its) BUT, i do agree with the ASD Dx.

But nursery are still saying that hes fine and doing well, socialising well, etc etc etc.

However he turns into a dictator once hes home and his rules and regulations are horrendous - before you think it, no hes not doing it for attention, he gets extremely distressed if rules arent followed. dont need to bore you all with the details, suffice it to say that most of them dont make any sense to anyone but DS4.

I have been into nursery for quite some time (transition for DS5, {3,1y autistic, starts in september) and have watched ds5 whilst there. hmm hes not what i would call overly social. will mix with 2 or 3 kids tops, avoids noise, avoids hustle, not particularly chatty (but he also has a language disorder too, but not enough to stop him chatting endlessly at home!).

MY point? well he seems to be 2 different people, with subtle difficulties that arent presenting too much of a problem at the moment... will bide my time until school starts getting more than he can cope with, which will im certain be at some point not too long.

mysonben Tue 30-Jun-09 15:52:28

Misscutandstick- That must be hard for you if your ds'nursery says'he is fine'. It seems a lot of asd kids behaves differently according to the environment.
My ds has problems which have been noticed at nursery , actually it's the nursery who alerted me to his social difficulties. So i should consider myself lucky along these lines.

Eventually our children will indeed find it harder to cope when they start ms school and the difficulties will be more evident so hopefully won't be ingnored .

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