HOw do you deal with people telling you your DC is 'fine'?! - Rant alert!

[SammyK]

??!??

I am currently in the process of fighting for a dx of aspergers/asd for DS 4yrs. He is high functioning, but does have lots of issues and behaviours that affect him daily (and nightly).

Relatives (mainly on DP's side) keep telling us (his parents) that he is fine, and I feel like screaming at them!!

I am seriously sleep deprived, I am sick of cleaning shitty pants, hugging his tears away, calming him, and having the same conversation over and over and over. I don't need people telling me he is fine. Or giving me parenting tips, or telling me he will gow out of it.

Sorry rant over now.

I know how you feel - I think the older generation particularly, just don't understand. AS wasn't 'invented' in their day.

I found this recently. I think it is quite useful.

I also used to show the doubters the reports I got back from the paeds and the other professionals that assessed my DS. That helps too, especially if you show them as you go through the process. It won't be such a shock when you get the final dx then.

My brother in law told me the other day, that he was sure that my DS would grow out of it!!!! He has aspergers, no he bloody well won't grow out of it!!!!!
He wasn't being malicious in any way, it was just a complete lack of knowledge about AS - but it still makes you want to scream I know!!

I found this really useful. Its a bit american, but explains AS/HFA really well, and is great for handing out to grandparents or other well meaning but uninformed family members.

LOL Niecie cross posted with the same link!!

Thanks so much both of you, I read the link and am sat with tears in my eyes.

It is really helpful, and I may print it out and keep copies to give to anyone who I feel needs educating.

SammyK, until September 18th, I wouldn't have had a clue how you feel. But that was the day Pre-school asked my permission to get an assessment of my DD for 1:1 for the free-play time, because they felt she was 'behind'. Her assessment has taken place, and she needs full 1:1 for all sessions, and is being referred to the Paeds for further assessment.

Everyone has agreed with pre-school, except my family. Who, I have found, can not get their heads around the idea that there is anything 'amiss'. It is SO draining having to say "Yes, I know what you are saying Mum/Dad/Sister, but they don't hand out 12.5 hours 1:1 per week at the drop of a hat for nothing".

"Yes, I can see what you are thinking, but the pre-school sees hundreds of 2.9 year olds over the years, and they know what to expect & feel DD needs intervention."

If only they could see that it would be more reassuring if they said "OK, what can we do to help her", or just accepted the facts, that she does need 1:1, and that is why I am so exhausted trying to look after her, DD2, and being 12 weeks pregnant with DC3.

SammyK, I have ranted myself but what I wanted to say was this:

Your son may grow out of it, he may not, but you will find it easier as time goes on, because you will find ways of dealing with things, and anticipating situations before they occur.

There are some great threads on here about specific ideas. TClanger posted about a sensory bag, on one of the threads. It may be of help? specialchildren.about.com/od/sensorystrategies/a/sensorybag.htm

SammyK, I have a 9yo dd with ASpergers and I have incredibly supportive family members who STILL like to say "that's normal behaviour". I've come to the conclusion it's down to their pain at having to accept the fact that my dd is challenging and my life with her is very difficult. It makes them feel impotent and heartbroken so they try to reassure me (themselves)that this is normal. Instead of feeling angry at them I feel sorry that they are too finding it hard. This might sound like hippy dippy stuff but it gets me through the day and is better than feeling anger and rage and assuming they "don't get it". Msybe they do but they are having a hard time seeing you suffer?

Forgot to add, I've only reached this conclusion in the last 12 months after counselling. When my dd was 4yo I felt EXACTLY the same as you!! And sometimes I still do. It's so hard isn't it? I just sometimes want to scream, cry and throw myself around!

lou - wow that has been sorted really promptly for you, it's great they are eager to give her the 1:1 she needs.

thornrose - I think you right in a way, I do see what you are saying, it is hard for everyone as we all adore him.

I am kind of used to ds and his ways, our life is adapted around him and it is only when I am sleep deprived more than usual that I get this anger and exhaustion.

Thank you all for your kind words.

Also, for what it's worth you are at a really difficult time right now, 4 to 6 yo is especially hard in my opinion.
Anger and exhaustion is really debilitating and affects how you function, be kind to yourself, no guilt, no blame you don't deserve it, ever!

it's infuriating isn't it? my sister doesn't believe that ds should have a statement because she works with visually impaired kids some of whom haven't got statements - and "they really need it" (unspoken subtext "and ds doesn't")

sometimes I feel like screaming it's not just us - it's teachers/staff in 2 nursery schools, 1 primary and 1 secondary who've all had to deal with various problems - and LEAs don't just hand out statements just for the fun of it - ds has the highest level of statement our LEA will assign to a child in mainstream education!

My friends do this, and my mother finds it very hard to accept that ds's eccentricities are anything but a manifestation of his genius
They mean well, but it constantly puts you in the position of doom-monger and pessimist, saying, 'well no he's not fine, or no, he won't grow out of it' which does NOT make you feel better. I recently had a massive row with my oldest and dearest friend because she would stonewall any attempt to talk about ds's problems or act as if she knew more than me. I told her that I worried about him day and night and being told either 'he's fine' or 'Yes, I could see at once he was autistic' was completely unhelpful.
With my mum I try to be tolerant as I know it all stems from loving him so desperately.

My theory is that the genetic componant of aspergers et al, plus the sliding scale nature of these things, means that in families some behavior that are typical to aspergers can actually be quite normal within the family.

Hence nobody understanding when you say it's because of aspergers (or whatever) - they remember uncle ron/ their sister/ their nephew/ cousin doing the same thing. Which to them means it's normal.

That doesn't account for friends doing it though, eh? I think they just feel that it will somehow reassure you or something, or that you want to hear comforting lies, or that they feel disloyal agreeing that your child is 'defective', but that just turns you into the doom-monger. And sometimes if you say, 'No, he won't grow out of it' etc tehy look at you all shocked and hurt as if to say 'how could you be so mean to your own child' which really winds me up!

I think that some people deep down believe that the condition is just a label or an excuse, not realising the hoops that parents have to jump through to actually get a diagnosis. One of my sisters is a bit like this.For instance she is a teacher and apparently they have no chn with specific learning difficulties in the school where she works because they teach them so well.

COTCS - at that being teacher's view of special educational needs.!

Colditz, I do think that is a good point in terms of feeling defensive of others in the family, as well as ds, my SIL inparticular is always saying 'all 3 of mine did that'. Maybe she is defending her dcs and how she views them, as well as my ds.

I don't have many friends so that doesn't come into it as much, my one close friend and my sis (who I am very close to), have been wonderful.

Yes I do feel like 'doom-monger' a lot at the moment, it's hard enough coming to terms with yourself without having to force others to accept it. I now realise I shouldn't expect them to behave the same way I am.

DP is either trying to stay positive, or burying his head in the sand, I cant decide, either way I often feel peeved/resntful he isn't outwardly reeling and hurting from this as I am.

can I just add something.
My DS is very severely, proundly affected by his ASD. He has littel useful speech and a whole raft of difficulties and behaviours which necessitate special schooling and will mean he will need lifelong care.
I still have to deal with people minimising his difficulties.
It is nothing to do with my family not noticing behaviours because there are traits - we have no history of any ASD or related disorder at all.

I think it is just to do with people making them selves feel better. It isn't meant to be selfish - it isn't intended to make life harder. they just find it hard to deal with and wish to minimise it so that there is less chance of being caught up in the maelstrom of your grief or upset.

If you say 'he is struggling' and they say 'gosh he is - how awful for you ' then you could unhinge in front of them and that is whatthey are deeply anxious to avoid.

I take comfort from the fact that they don't mean it. I have learnt several good ways to correct their false positives without being too rude . And I also try to remember that , particularly with family, they are also trying to get their heads round the factthat life may not be quite as they expected for someone that they too love

I understand that it is hard for family and others close to our children to accept that they may have problems, but I find it difficult to tolerate or to make excuses for comments which are said in a manner that does not take into account my feelings. I have to deal with professionals involved with autism and many of them are not exactly polite to me to put it nicely, and then to find the same lack of support from those who are supposed to be closest to me is very stressful. Three of my four sons have asd, and I am sick of all the subtle references, and sometimes explicit comments, referring to the fact that they could deal with it much better than me. I have not slept a full night in over 5 years, and for the first 7 years when my eldest was younger. It is so stressful without their thoughtless comments. I don't need to hear the best way to talk to my dc, or how I should be careful with my youngest incase he shows signs. I know this sounds a little selfish, but this is how I feel. At the moment my in-laws are driving me bonkers, they ake stupid comments and keep on askig me if I get dla. WTF?
these are my children, and life is very difficult for them, and I am all they have got.
Sorry about the rant, but I am fed up of considering everyone els's feelings, I am exhausted and can't remember when I last had any time to myself, and I don't know what it is like to actually sleep.

I agree with Pag - that it makes people feel better to be so optimistic. I think this sort of stuff tends to be worse pre-DX - as before DX people can treat you as if you are worrying about this sort of stuff for the fun of it, whereas most people will shut up a bit once you tell them a professional says x/y/z is wrong.

sorry to hijack but Total how is your related issue going? Where they said your ds was now near the 50th centile but you don't feel this reflects reality at all?

Well, pre-dx was extremely awful, but everyone, apart from my wonderful sister, has in some way blamed me. They al think they can cope better with my dc. I am having a particularly difficult time at the moment which may be affecting my reactions to them, but just one kind word is not that dificult is it? The kindest thing that anyone said to me recently is when the doc that diagnosed my 5 year old said 'autism is never the fault of the parents'. Everyone else can't wait to jump on me and have a go. They either don't really think it exists or say that they could have dealt with it better.
sorry this is a very bad day for me. I need some time off i think, but I can't have it. I am having a day of 'this is not the life I planned'. I love my dc and I wouldn't want anyone elses dc, but I wish that this society and system would provide the support my dc need, and not make me fight for everything.

Lingle - seen your post, will respond elsewhere.

Deeja - am sorry it's such a nightmare for you and your family are so unsupportive.

My DS who has many problems inc CP, communication disorder, metabolic disorder, mobility and balance issues attended a local SN nursery. Said nursery is so oversubscribed only those proving they are very much in need of SN education can attend.

Recently when asking a member of staff to fill in my DLA renewal, she commented "he doesn't get DLA does he? He's no more difficult to look after than a normal (yes, she said normal) child."

Of course, how stupid of me, all children need hours of physio every week, cannot be ever left alone, cannot feed themselves at age 4, cannot dress themselves and aren't toilet trained etc.

I feel for you, although no one wants to be told, "your life must be really dreadful." the odd acknowledgement of all your efforts would be nice.

My MIL is similar, I'm sure she thinks I exaggerate the issues we have.

Can i just put the otherside of the story a bit? Think sometimes people say these things not because they think its a made up condiiton but because they want to reassure you that they think she/he is a lovely child and that their condition is part of who they are.

I wanted to say something similar to witchandchips. I think that sometimes people are worried that agreeing there is something "wrong" with a child can seem like an implied criticism.