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Hurtful Comments Made By Family Members...


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#1 tracky2

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Posted 28 January 2018 - 04:11 PM

Hi I’m feeling in a quiet vulnerable place today after a conversation I had with my mum regarding my son.

We have been having a difficult time with L at moment refusing to go anywhere, it gets to the point where there’s a lot of shouting and threatening that just upsets everyone and sometimes doesn’t even change the outcome.

He moans and refuses to even go for a walk even if it’s going somewhere he wants to go at the end if it, this kind of thing we persevere with because it’s good for him. His two classes a week he reacts the same and we end up getting him there as we know he likes his Lego club and enjoyaball. When it comes to the weekend we really struggle to get him motivated and out doing anything.

Anyway we had another difficult day yesterday with him refusing to go out and I’m afraid to say we did not handle it well... a very upset household at the end of it. So I was discussing things with mum and really was not expecting how the conversation went.

She started talking about control and manipulisation by L and then spoke about how she couldn’t understand why the school are not seeing any if his behaviours so how can he react so differently in two situations and that other people including herself don’t get any if this behaviour. That wasn’t too bad but then she went on to say that she feels that he’s not as bad on the spectrum as I make him out that I make out he’s worse than he actually is. Then went on to talk about consequences. Why didnt I consequence his behaviour if he wouldn’t go out?. That he should be dealt with in the same manner as everyone else. And that if he’s as bad as im saying why am I not pushing harder to get help. We can’t get people to listen so getting a diagnosis is proving difficult because people don’t see it.

I’m at a loss and got quite upset although did try and keep it calm and explain things.

Now I’m doubting everything due to this and everything else . I doubt what I do and dont do with L on what seems a daily basis anyway because of no diagnosis and him appearing so coherent on the surface, And I know that because if this I’m probably not being as consistent as I need to be with him.

I hate that to others it looks like he’s just manipulating and controlling us, I’m sure there is a part of it that is that but to be told so blatantly just hurts.

I told her what she said was a bit hurtful to be told that it wasn’t and I had asked an opinion and that she didn’t say things to be hurtful that she wouldn’t do that....

God ... could I really have got things so wrong.

Sorry I don’t mean to sound so defeatest... guess I’m just saddened by it all.

#2 imperfect parent

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Posted 28 January 2018 - 08:40 PM

:hugs2:

I know how you feel.  Over the years I have been told so many times that DS1 is intelligent and his ASD was considered so mild as to not need a DX until he got his dx 8 years later. He has since been said to be severely autistic, and the young person most impacted by his autism that experienced worker at the specialist school had come across.  However there are many, including family members who think that if I just stood firm and told him to buck up his ideas everything would be just fine.

 

DS1 is always hard to get out, but often enjoys it when we get there (but not always).  It's hard work, and sometimes I wonder if it is worth it.  

 

We do use reward and consequence, but so often there is no reward or consequence great enough to overcome the compulsion to freeze.

 

i can get DS up at any time of day if it is part of a plan to do something he wants to do and there is no stress impacting, but try to do that on a daily basis and you are on a hiding to nothing.  Other people coming and going impact hugely and one wrong comment can wreck a day.

 

I constantly have to plan ahead eg to get him in the bath it has to appear to be in his control so it is always a question of tonight or tomorrow morning knowing the answer will be tomorrow morning; however if I suggested tomorrow morning it would be unlikely to happen.  He is good at trying to stick to what is agreed, so if he can't then there is a reason which he may give now or in 6 months time.  Some things which stop him are so simple to resolve, but nothing can be done at the time because he can't say why.

 

Don't be defeated, you can only do your best.  My user name here was chosen at a time when my boys were about the age of L, it sums up how I was feeling then; nothing much has changed as it is easier to blame parents, particularly Mum, rather than provide the support our kids need.



#3 tracky2

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Posted 28 January 2018 - 10:38 PM

Thank you, can I ask your thoughts on the refusal to go anywhere?
Could it be control /manipulation on his part? He can’t be bothered so he knows if he creates enough then most likely he won’t need to go. I’ve been reacting like it’s been his anxieties stopping him but my mum clearly thinks he’s controlling the situation and us and he should be consequences for it.
Not sure how you would actually do that apart from not allow him access to his usual things ie iPad etc, but I don’t see the purpose in doing this. I like consequences to be linked making understanding greater. Don’t use them often.

It’s hard when others think you think he’s more challenged than what he is? I try and treat him how I beleive is best regarding his anxiety and ability, sociall interactions etc. I’ve tried to tune in to his ways to give me idea off triggers etc due to him not verbalising them although he has a good vocabulary. It appears though that I’m seen as hindering and not dealing with him correctly. I just feel like everyday is a mind field to negotiate.

I think it would help greatly if he had a concrete diagnosis just for my piece of mind even

The other issue we have is keeping clean and changing boxers, teeth brushing etc, others can get him to do it but we can’t get consistency. It looks like he plays us up. I gave him a chart with the days I expect him to shower Saturday, Tuesday, Thursday. Hoping to encourage everyday use eventually. He changes his boxers when he other people look after him but refuses to do this for us, he likes the comfy ness. Only when we get him in the shower do we manage this. It’s so frustrating that he complies with teachers and his gran/ aunts but not us.

#4 imperfect parent

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Posted 29 January 2018 - 09:18 AM

Without knowing L, or his routine it's hard for me to make any useful comment on his reactions, the best I can do is tell you of our experiences with our 2 boys and hope that understanding their rationales will give you an insight into L.

 

DS1 struggles with going out, always has.  He does better on a one to one basis with a trusted adult, but even better with his friends.  However he can only manage so much and needs time to recover.  How much he can manage varies.

 

A recent outing involved a 4 hour journey to a city he knows well ( and a 4 hour journey home) to see an exhibition in the museum which he had not been in, but knew where it was.  I went with the 2 boys and we were all surprised at the queue, but in the familiar environment of the city he managed.  Museum staff helped by sending chocolates along the queue and keeping people informed.  Once inside he struggled to know where to go  and with the feeling that he should move on as the crowd did, but then realised that we did not all move room to room in order.  He managed the whole exhibition and once out was able to agree where to go to eat.  Sod's law that was closed ( I hate cafes who close at 4) so we quickly worked out an alternative and drove there only to find that shut.  The second back up plan was a pub I was confident would be open, and it was, albeit half an hour away on our route home.  Having been there before he was content with this and went in happily.  Deciding on a burger, he even had the foresight to question whether the relish was served on the side, I duly asked and was told it was only to have it arrive with the relish in the bun.  My heart sank, he wasn't able to say anything, just froze; so I suggested that I scrape it out and he eat it which we did.  Afterwards he was able to tell me that the reason that he managed was because overall his stress levels weren't too high.  Knowing everything had been done that could have been done he was able to accept that we had been wrongly told the relish was on the side; if he had been unable to ask  me to find out he would have been unable to ask for the burger as his anxiety would rise until he saw the dish. 

 

We all had a long conversation about ASD friendly menus, some are better than others.( don't get us started on ASD friendly cinema screenings, they don't work for us; we just chose a small cinema and hope we're not near anyone noisy or highly perfumed)

 

The difficulty both for going out and for menus is the unknown that raises anxiety, things we know and take for granted raise their anxiety.  DS knows that anything can be removed from a plate, but still it can be too much for him.

 

Our most recent outing last week was nearly a total disaster even though it was planned and by comparison to the museum trip just a 7 mile journey to a very small town with a support worker.  He froze when deciding which of 2 cafes to go in, and I was only able to move him by suggesting we go to get the cash he wanted first.  From there he was able to say he was hungry so I suggested going to the chippy and started to walk in that direction.  Once in he sat and ordered a different dish to his normal and was happy and relaxed.  Many would say he is being manipulative, but it's how he can communicate at times of anxiety, and really if he were being manipulative we would not have got out of the house.

 

Currently he has 3 support workers, but despite having seen them for almost the same amount of time he struggles to communicate with them to varying degrees.  Our council say he is refusing to engage; the support workers say he never refuses as he always stops what he would otherwise be doing even though he can't always get out of his room.  

 

I think what you need to consider is what would be the reward for him if he didn't go out at the times he is difficult.  Mostly the reward is a reduction in anxiety for my boys, but there is also the disappointment that they haven't been able to do something they want to when the outing is something they have wanted to do.  DS2 missed a friend's 18th celebration due to anxiety, and DS1 says the more he wants something the harder it is to move.

 

Most people , even those with experience of ASD,  will agree that we learn from experience, but we have to recognise how much challenge and learning is enough, and how much is too much and risks overload.  this varies not just from person to person, but from day to day and hour to hour.  Some cannot learn to go with the flow, and instead we need to take them, but only as far as they can each time.

 

Success alleviates future anxiety, failure compounds it.


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#5 apricot

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Posted 29 January 2018 - 10:32 PM

Regarding showering/boxers/teeth cleaning etc.

DS view is that home is where he should be comfortable - so he will be smelly and unwashed and we should accept it because we love him and want him to be comfortable.

He will clean up if going out or meeting non-parents as he doesn't want to upset strangers. So he showers on college days and not otherwise.

Don't know if that helps at all. There is a weird kind of logic to it.


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#6 tracky2

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Posted 30 January 2018 - 09:50 AM

That makes sense... it appears L is the same. It’s all about comfort and no stress.

Problem is I guess it’s my expectations and trying to teach him how to learn to be clean etc, he doesn’t care if he smells and will go to school in the same boxers.


What I’ve realised in the past couple of days is others around you have no idea what you experience as an Asd family, yes L may be mild on the spectrum? I don’t actually know where he sits within it as I still haven’t got a diagnosis... anyway, the point is that the effect it has may be so different and changeable depending on environment, stress, people there are so many factors involved that those around us looking in will not c the full picture.

I spent the day yesterday fluctuated between tears (damn hormones don’t help) and feeling confused.

Today I feel better, I realised it’s our life and we need to work it the best we can. I can only try, right.

The other thing I think may help is more consistency I think I change things up to much I guess in an attempt to work things through, it is probably sending mixed messages.

Thanks for the understanding
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#7 queen claudia

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Posted 30 January 2018 - 09:50 AM

LE is the same and we have a battle on our hands every weekend to get him out. Even getting him out of his bedroom at any time is difficult and we've on occasions even resorted to bribery (sweets) just to get him to spend some time with us watching a TV programme or movie.

The movie or TV programme of course has to be his choice otherwise he will criticise whatever we are watching so it just ends up a very unenjoyable experience.

Same with bathing it's always 'later' or 'tomorrow'. It's such a battle that I know sometimes I just can't face it and let him do or don't do what he wants.

So you are not alone as you can see from the replies on here.

Must admit I have zero tolerance even with close family for what I see as their complete ignorance and I've no problem telling them just that if I have too.

#8 bluewater

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Posted 31 January 2018 - 08:41 AM

I used to think I was a useless parent and neither grandparents could understand why ds1 was so "badly behaved" even after dx (age 9). Incentives never worked for him. Being "in control" of choices did for a while, although this became not committing to anything including going to school.

 

There have been very few people who have really understood: One friend who encouraged us to speak to our health visitor in the first place (school thought it was parents too); an NAS course leader who told us "mild" is misused; the ASD nurse who visited to help when ds1 was being abusive and refusing school for 2 years (and was key to getting the LA to find a non mainstream placement).

 

After 16 years my parents are finally a bit more clued up, although I'm not sure my mum read any of the information I sent them until fairly recently.



#9 miami girl

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Posted 31 January 2018 - 11:11 PM

Littlun has asd, and gone from severe to autistic and that alone has taken 9 years to get too, he will walk in the home with just boxers and I have a fight on my hand to get him to get dressed, if someone is coming over say my 5 yr old granddaughters and I am like you need to get dressed its not appropriate for him to do that, both the boys I now have a battle to bathe and brush teeth,  I tell them that they need to bathe ect but the battle is so immense they feel like they can be "their natural self" could you speak to the school??? my boys are in sn and they promote teeth brushing at school showering ect in their pche class, Littlun had severe water issues and the school desensitised him to it so maybe they could incoperate the issues into every day things??



#10 tracky2

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Posted 01 February 2018 - 09:51 AM

Had a good chat with my mum the yesterday.

We have resolved the tension finally, although she couldn’t tell me why she reacted so aggressively when talking about L the other day, she didn’t even realise she was agitated. She did say she was worried about how I’m managing, I’ve got Ill health at moment, my husband suffers ill health from time to time, I’ve got a sister in law from hell and managing L. I guess she got overwhelmed and didn’t go about things the right way, she worries about Ls future as he’s so capable.

we are all stumbling in the dark at times.



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