when I have just REALLY realised that my child does indeed have special needs, please don't...

[BumptiousandBustly]

Tell me that is probably just that he is "so bright, he just can't relate to other children!" That is a) not true, and b) NOT A GOOD THING

Tell me that you know someone who had that, and "THEY managed to work in a garden center!" - I have no problem with the idea of either of my children working in a garden center, but I don't want to think, at the age of 4, that that should be the sum total of his life's ambition.

"reassure me" - by telling me that I am wrong, he is totally normal, your child also displays many of the same behaviors and You are not worried, and that he will grow out of it all!

a) He is (very sadly) CLEARLY not NT. b), your child DOESN'T display the same behaviors - or you would be tearing your hair out too, which means that it ISN'T TRUE that you can cope with those behaviors and I can't. c) he is actually getting worse, not growing out of it.

ALSO do you not understand that by dismissing my concerns you make me feel worse and like I have to justify how bad my Darling DS actually is.

Finally PLEASE let me be sad, for a little while, that my son is going to have a much harder life because of how his brain works - without saying things like "he is still your little boy!" I KNOW THAT, AND I LOVE HIM AS MUCH AS EVER, BUT I AM SAD BECAUSE HE WILL HAVE A MUCH HARDER LIFE BECAUSE OF HOW HIS BRAIN WORKS.

Rant over, hope I haven't offended anyone, please feel free to add any of your own.

no offence - know just what you mean

trouble is I was probably just like those people back in the day.

The other thing is when someone IS kind and understanding, you'll forgive just about anything - I now attend a church where (I hope they don't read this and recognise me) quite frankly I think they are bordering on the evangelical fundamentalist nutter brigade (after my anything goes C of E upbringing) - trouble is their Sunday school teachers are LSAs during the week and can cope with him /embrace him -[ at our old church he nearly killed the poor old women who did Sunday school - and boy did I hear about it]
Needless to say it isn't called Sunday school in the new church :)

Say "Oh but she looks fine and she is lovely" [how many times have I heard it??]

I wouldnt have spent 3.5 years of heartache trying to get a DX if she didn't need one, would I??

By the way she is lovely but she definitely has ASD.

No offence taken

NotonURNelly

I was probably like that too: in fact I probably say things like that still sometimes with out realizing it.

Its just that although I have been talking about this for so long and suspecting that all was not right with DS, while his pre-school were saying that everything was fine there, there was still the possibility that it was really all in my head.

They have (very suddenly, whole other story) turned round and actually pretty much agreed with everything I am saying, which makes it really real - and its all a bit sore that the moment, I find myself really grieving for him, and how much harder his life will be and it just feels like everyone is pushing on that sore point, with their well meaning comments.

Ineedalife - ASD here too - and yes all the "but he is so sweet, and he interacts so well with me!" -

Its like they are saying, you are just making this up - want your child to have a problem, can't cope!!!!!!!!!!!

When my ds was at the local CDC,the so called report describes him as 'an attractive&strong child'...This 'consultant'also decided he didn't have ASD & his problems socially& emotionally were just his personality....!!?

Yes i got a 2nd opinion....dx- ASD & ADHD a year later at GOSH.

I dont know who annoys me the most...The 'Give him to me for a week & I will sort him out'. Oh no u wont!
or
The 'Ah bless him, hes got a good memory&good at maths, hes ok, all kids are naughty,you should see mine'??? LEA don't pay £40k per year cos hes naughty!

And please don't tell me "but they're such gorgeous boys"

"they all get there in the end" WTAF? said to me by a surestart family worker, i.e. someone who really really ought to have known better.

"my cousin's aunt's canary didn't speak til 29, and now they are a brain surgeon/nobel prize winner"

any reference to "Einstein".

People just don't know what to say and think it's comforting you to say 'But all children do that (antisocial or challenging behaviour.) Yes, maybe they do, but not all the time! Rant away on here! We'll probably come up with some of our own clichés. I'm forever telling those recently diagnosed that it's just a signpost to support and hasn't actually changed your lovely DC. No it hasn't changed them, but it has changed your hopes and aspirations.

In some ways I'm glad not to worry so much over the petty little things some parents lose sleep over. What book band is my child on compared to his friends? Will he get a level 4 or 5 for his SATs? I'm more concerned about will he ever learn how to live independently, will he ever get paid work? Others on here may worry about more serious problems again.

Some of those friends/nursery workers are trying to help, they just don't know how to. Not their fault. You'll have to tell them what you need, explain that you don't need platitudes. Explain that you will go through times of being so jealous of their children's easy achievements that you might not want to hear about them, but that you will find it a little easier with time. ((((hugs))))

I think I am guilty of telling people 'he's still your little boy' - albeit using different language, because for me personally I had to remember that the dx didn't mean a damn thing within the four walls of our home. Ds1 is just ds1 to us and no so called professional, report and/or dx is ever going to change that.

That by no means takes away from my fears for his future and the grieving I went through when I realised the future I thought he was going to have is probably never going to happen.

A few years along though, I have realised that he will be the best he can be, with his own strengths and weaknesses. It might not be what we initially dreamed about and hoped for for him, but he will find his place in the world and we will do everything in our power to help him to do that, just as we will for our other two dcs. The expected end result might have changed for ds1 . The route we take with/for him might/will be different, but fundamentally the process is still the same for all three of my dcs. They will build on their strengths, we will help to mitigate and compensate for their weaknesses and we will support them no matter what to reach their potential and live a life that is as fulfilling and happy as it can possibly be.

I had another parent say to me ' oh but he can talk so he's not REALLY disabled'

this was a parent from the special school which both our children attend. Well, of COURSE I am glad that he can speak, but actually our children's disabilities are completely different.. it doesn't change the fact that my child won't be independent, doesn't make it any better that because he has a little more understanding, he KNOWS he is different... it still sucks.

Competitive special needs is awful, because whatever our children's difficulties they still give us heartache and worry.

I was told by someone "but he's not PROPERLY disabled." Not sure what precisely they mean by that, but I imagine it's something along the lines of missing a limb or something physical.

"Its like they are saying, you are just making this up - want your child to have a problem"

I get this too - pisses me right off!!!!! my ds not diagnosed yet, but clearly he has some causes for concern so have got him in the system, atleast have him assessed and see what they think but meanwhile have to put up with family members saying "he's just slow - all boys in the family are slow" - really?? my other boys haven't had the same issues, nor have the other boy cousins

people who hardly see him saying "he seems fine to me" - hardly see him so how would they actually know, especially people who dont have or know about kids anyway!

got chance to go on a signing course through portage which i think will really be good for him, but mil says "oh no, dont make him do all that we want him to talk and be normal" - yes mil i would also like him to "talk and be normal" however lets be realistic for now shall we!!

and my mum giving various plastic toys that you press and it says the word "this will teach him to talk" - yes cos im sure a couple of plastic toys will achieve that, if it was that easy he would have been talking long before now!

various mums "my child cant talk much either" - when they are much younger than mine and i have heard them say quite a few words in the last 10 mins...

not to mention "he cant crawl cos you carry him too much" type of comments

some people obviously are trying to be reassuring but it gets really annoying when they clearly dont know what they are on about! exactly what you said, trying to reassure by telling you that you are wrong and nothing to be concerned about is absolutely no help at all

I could have written this myself.
My friends have absolutely no idea the strain that we feel managing my son with ADHD, ASD and anxiety. If I mention anything they usually say 'oh all children do that'. Yes ok but does your child do it for 12 hours a day everyday? Makes me feel like I'm not coping where they would but generally just pisses me off.
The other favourite is 'but he looks so normal' -WTAF?

Do you know, I think I'm just going to give them a disgusted, tired of listening to this bollocks type look from now on, I'm good at those!!

"oh there's nothing wrong with him, he's just lazy... He'll speak in his own time"
(year of speech therapy, place at a speech n language nursery, and he's trying to communicate in any way he can)

It's so good to hear from others struggling with this too! I really think other people don't understand the implication of what they are saying but it all still really pissese off!

My favourite lately is '' neither of my children are social, just like him, but we aren't worried!'

Well if your children are simply not reacting when other children talk to them to the extent that most of the other children at pre-school have stopped bothering to even try and it doesn't bother you then that's very worrying. OR your children are actually NOT the same!

Sorry pisses ME off

i'm glad i come across this thread because others comments are starting to make me think its in my head and its been getting me really down lately.

Salad. Totally agree. All those people who try and ''reasure''' you. It really feels like they are saying; 'you are making this up. It's not real! It's all in your mind. Why do you want there to be something wrong with your child?'

When DS was diagnosed as having specific language impaiment at 7 I went through a phase of feeling guilty(For not picking it up earlier myself), upset that he had this and wishing he didnt. Feel angry that i now have to fight so hard for resources for him and generally let down by the system!
I think I'm entitled to feel that way without being made feel as if I'm over reacting, being told not to stress it and being told I;m sure it will all just click with him really soon!!!
And I also KNOW there are alot more serious problems he could have but I just wish he hadnt this one either!

I thought I'd chip in with my own personal favourites for ds2 (5) who is dyspraxic, has some hearing loss, has some sensory stuff going on, and has some minor medical crap thrown in for fun:

'why would you want to label your child, it won't change them' - no but we might now what is wrong and how we can help him

'but he is such a lovely little boy' - yes, I know, because he is my son

'he's such a happy boy' - yep, right up to the point where he falls over for the 3rd time that day and rips the skin off his knees again

'he'll grow out if it' - no he won't

'maybe he needs to walk a bit more' - he's been walking for 4 years, if he hasn't mastered it now, I don't think a little more practice is going to do it

'is it just that he is a bit retarded' - in fairness that was from my Grandad and when he was growing up you were either retarded and sent away / kept indoors, or you were 'normal', so he's not really up with current practices.

and lastly

'oooh Daniel Radcliffe is dyspraxic' - excellent, so all is well as ds can carve out a career as a fucking wizard.

Ooo, a fucking wizard! Like it, latte.

Aww yep had most of those

But do say ( as I had the other week)
"My god..... really?!!!... He's amazing!... To cope with that and everything life throws at him.... That is amazing!!... What a fab young man!"

I could have kissed her
With tongue