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Nic m

need some advice please

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Right now life has been difficult in my household.

My daughter is finding secondary school quite tough, and i have decided to make a lot of changes again regarding work.

I am doing this to help my daughter and make things easier for us both.

However my sister has really upset me as has my daughters father.

 

My daughter has had several chest infections lately and has also had very painful swollen joints this winter, all of this has added to the stress she is under and i feel the length of time she is taking to recover from them may in part be down to how stressed she is.

 

Anyway, my sister said to me yesterday that what my daughter is going through is no different from any other child starting secondary school!

I know this is difficult for lots of children and i am not dismissing that and was also not looking for sympathy.

I am giving up my shop to open a stall at weekends because i am not managing to do everything that needs to be done. My sister seems annoyed at me for this, but i don't really care how money comes into my houshold, i just want things to be easier for me and my daughter. So when she asked about this i explained the kind of issues i was dealing with, and this was her response, along with , well just find ways of helping her then!

 

Tonight another major eruption happened in my house and because i have been quite strict over the last few months about bedtimes, and routines etc in order to help my daughter cope, well she didn't like it, but that is nothing new and she texted her Dad to come and get her (without my knowledge) he came suggested that perhaps i should just appease her and also said well you are 10 years too late in disciplining her!

 

I sent a very long text to her Dad explaining how angry i was at his response and that i need a united front to combat this very difficult period in our daughters life, i got no response.

My sister, well i don't know how to respond to her attitude.

 

I wonder is it even worth trying to change minds/attitudes within my family?

 

I usually say very little to them and really don't ask my daughters father to do much beyond the basics, but I am upset at how they have both responded

I don't bang on about my daughter's needs and really don't look for sympathy but i am tired just now because of all that i am doing getting the business sorted while dealing with my daughter's needs and really felt the sting of their attitudes.

As you can see from the length of this post i am not being concise and to the point either just now.

So my question is,

 

Is it worth worrying about this attitude, because i don't ever see it changing?

 

Thanks for listening x

 

Nic x

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I would do what you feel is right, and is going to help your daughter and to the toss with everyone elses attitude, you have your daughter 24-7 and if either your sister or her Father had her this length of time it wouldnt be long before they realised systems and routines help children with special needs, they feel safe and even though they fight against it, if it was slackened it would cause much more problems and longer term too.

 

My own son really needs structure and detailed bedtime routines, if I relax he has alsorts of difficulties and doesnt settle until 2am, if the structures, routines, disaplin are there he is much calmer, it sounds bizare I know but he has to know what is coming otherwise he gets anxious and stressed, the problem with stress is that your immune system does not work, it starts to breakdown and hence the reacurring chest infections.

 

I can understand how you want her to be less stressed, when we sleep and have routines our body heals and recovers much better.

 

I think your doing a brilliant job and its clear to me that you care and want the best for your daughter.

 

Keep doing what feels right for you, your the one who is her Mum.

 

JsMum

 

Edited by JsMum

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Hi Nic m,

 

Life is difficult in our house at the moment too, and I understand how you feel.

 

My son is 13 and getting diagnosis now. As you probably know from our children being young life is hard, and to other people , in my case, they just thought he was a pain, difficult and naughty.

 

I was a single parent from when he was 3, and I have had the 'you don't disapline him enough', and 'its because you are a single parent' 'you are not tough enough with him' 'its because his dads not around' . I knew there was something different and hearing these things from family and friends I did start to blame myself. As he got older I stopped listening to the views of them because I knew I was doing ok. My younger son wasn't like that and I didn't do anything different with him.

 

I have told my mum, dad and sisters about AS but not anyone else in the family. But I will when the time is right and I will let them know that it wasn't me.

 

You just have to do what is right for you and your daughter, and I think you seem to be doing fine. Things will always be difficult at times for all of us but we all do our best for the love of our children. And thats what counts!!

 

Joanne

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thank you, Ladies.

 

I am just tired i think, usually comments go over the top of my head, but just lately i am in no mood to be judged or have my daughters needs doubted.

 

I am sitting at the computer as my daughter is watching the tv refusing to go to school.

 

I am going to drop her off soon at her grandad's house (her dad's family) and see how they deal with a child refusing to go to school, swearing and being abusive.

 

All of this i am fed up with, i no longer wish to excuse this behaviour, and although i am aware her life is tough now i dont think i am doing her any favours by allowing this.

Her Dad does not get attitude because he doesn't really engage.

My sister, well i will just keep her at arms length just now and keep going with my plan.

 

Thank you again,

 

Its nice to know that I am not the only one.

 

Joanne, my family are aware of her AS diagnosis and for the most part are supportive, i guess my reality is that genuine support and understanding only really lasts from a few people. I think a lot of people get support fatigue or something and i understand this, im fed up just now and i have to deal with it.

So again thank you and hang in there

 

N x

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You certainly aren't the only one and I think since I joined this forum I realise that. I thought my sons refusal to do work and swearing and being abusive was him being stubbourn. And I sometimes wonder if it is. But alot of people on this forum have the same sort of thing, and I realise it is the way it is and we have to deal with it.

 

We had a big row last night over him refusing to wear his school shoes!!! To us, it's 'what is the problem with school shoes' but to him it seems to be a big problem. It amazes me sometimes, the trivial things that cause so much trouble!!

 

I was really low last week, we didn't have a good week at all, at school or home. I was tired and totally fed up, crying etc. Hang in there!!!

 

joanne

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Hi Nic,

 

I am so sorry to hear you are having a tough time at the moment. I know how hard you work as a parent and in your shop and that your daughter has done so well coping with her AS with the wonderful suport and love of you her Mum. Sadly it does seem quite common that once in secondary education things seem to fall apart I think our child all of a sudden notice their differences and the gaps between them and their peers widen, that together with teenage hormones it can be a dreadfully confusing time.

 

Yes the transision into secondary school is huge for a lot of children, but for a child with AS this can be ten fold, so many changes to cope with, not only academically, sensory changes (ie lot more children, different teachers, size and nosie of classes etc) and socially. Sadly unless you live As 24/7 it can be very difficult for other people to understand, family or not.

 

Whilst you have not had the support and understanding you perhaps looking for with your daughter's Father and your sister, your own instinct and expereince will tell you what to do, and maybe in time you will get the opportunity to express your disappointment with their attitude and how it made you feel.

 

Your a great Mum, don't let all this get to you and focus on continuing to help your daughter and setting uo the new market stall.

 

>:D<<'> >:D<<'> >:D<<'>

 

Clare x x x

 

 

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Clare,

 

thank you,

 

I am thankful for you kind words.

My daughter's father has come through! He is taking her for a fortnight to give us both a break. He has been good today and as much as i am upset at this, it is needed.

The sadness at seeing her distress and knowing i am at a loss at the moment is quite overwhelming.

 

But, tomorrow is another day and thankfully her Dad is helping. Her advocate called today and she is going to help too.

Hopefully things will improve soon.

 

Thank you

 

N x

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Nic give yourself some good TLC and let the feelings naturally flow, dont block them or push them back, Im pleased your going to get a break, remember were here to listen if you need anyone.

 

JsMum >:D<<'>

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thank you J's mum i feel better already knowing this.

 

I am tidying the mess left after the tornado and feel as if we both need this break.

 

I just need to remember that although this behaviour is not acceptable, that there are reasons behind it.

 

thank you.

 

N x

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Hi Nic,

 

I've only just found this so apologies for the late reply, but I wanted to reply as a few things occurred to me (though I am seeing this from an AS perspective not a parent's perspective)

 

Firstly school - yes, your sister's right, every child finds the transition to secondary school hard, but (before people throw things at me!!) it can be much much harder for someone on the spectrum (or with all sorts of other needs). "Everyone finds that/finds it hard" statements are about the most unuseful, unhelpful, demoralising ones that can exist. I get them now - oh everyone finds PhD work hard - yes, I know, they do, and I have that 'hard' but I have an additional 'hard' that isn't being comprehended and getting the 'everyone' comments just makes me feel that I'm being both useless in not coping with what everyone has and that also I'm not doing a good job of explaining the issues.

 

School refusal - this is a very difficult one - it could be testing the boundaries of discipline, but equally it could be an expression of extreme distress that she's finding hard to communicate in any other way - I'm afraid I don't have advice here and I don't want to scare you but you know your daughter best here - and actually that's at the crux of everything - we all know about children (and adults - I do this too) holding it together for a certain amount of time and then exploding in a 'safe' (so with you) environment. You know what changes have to be made to give her that safety she needs so you have to do what you know is right regardless of others - it's really tough, really really tough but you're the one who has to live with your daughter 24/7, not those who are happy to pass judgement on a few hours experience.

 

My daughter has had several chest infections lately and has also had very painful swollen joints this winter, all of this has added to the stress she is under and i feel the length of time she is taking to recover from them may in part be down to how stressed she is.

If you're not already, and have a good relationship with your GP/pead, it might be worth seeing them about this. Stress has an enormous impact on what seem to be unrelated medical conditions - they can make them worse and make recovery longer which in turn makes the individual more stressed and it works in a cyclical process that it very difficult to get out of. I know this from experience. Also, your daughter may be finding it harder to express (or even feel/understand) how she is feeling and rather than say "I feel ..." the distress a medical condition causes can manifest as behavioural 'symptoms'. It's a very difficult situation, because some time off may help her recover but it will equally make going back harder. Does she have the option to do part time schooling for a short while just to give her body time to recover a bit?

 

Tonight another major eruption happened in my house and because i have been quite strict over the last few months about bedtimes, and routines etc in order to help my daughter cope, well she didn't like it, but that is nothing new and she texted her Dad to come and get her (without my knowledge) he came suggested that perhaps i should just appease her and also said well you are 10 years too late in disciplining her!

OK, difficult to comment on as I wasn't there and I'm not sure what you mean by eruption. Firstly, from my experience, individuals with an ASD like rules and boundaries, but that doesn't mean they won't test them. In some odd way, we actually may test these boundaries to help us feel secure - we know what reaction we'll get if we do something wrong, we get that, and that reinforces that everything is ok. It's when we are met with different boundary places, different reactions etc that we can't cope because we don't know what's stable and what to expect. Texting her Dad might have been part of this testing - and of course as well as AS you've got teenager and hormones to cope with - lovely mix!!! What you need now is a simple rule (that her Dad is aware of) of what happens (that she knows too). I don't know what her Dad's access is, but in my view (and this is just my view) turning up just because your daughter asked helps no one at all. If you appease, just once, the boundaries and expectations are weakened and then the world becomes even less stable and more scary. Of course, this could be nothing to do with AS and she is just being a normal manipulative teenager - separating the bits is difficult, but actually, I think they should be dealt with in the same way. As for being 10 years too late, no, I don't think you can ever be too late, it's starting it and sticking to it that's important. The past is behind us - we deal with where we are now and what has to be done now.

 

my reality is that genuine support and understanding only really lasts from a few people. I think a lot of people get support fatigue

I understand that - you soon find out who the people who really will stick around are after a few difficult moments :tearful:

 

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Mumble,

 

thank you so much for replying, i have read your latest posts and know you are having a difficult time, so i am very thankful for your input.

 

 

The latest update is that my daughter has gone to live with her Dad for a fortnight, it is something i am unsure about, but i think she needs to see that with bedtimes etc he thinks the same as me. She usually stays on a Friday night and gets to stay up late, but i think seeing that her Dad also thinks there has to be routine will be beneficial, and i think she needs to live it to understand it.

School refusal is down to being stressed and i am working with the school on that one and have spent the morning speaking with the school and her advocate to arrange a meeting to discuss how they can help out.

Thankfully her Dad is doing a lot more and seeing her distress so he will back me on this, (only now though because it is impacting on his life, but better late than never).

 

My GP is fantastic and is always willing to help, even to the point, a few months ago her joints were really bad and the school wanted to send her home saying her hands were broken! It took my GP 20minutes to convince her that it was her hyper mobility and the weather causing the swelling. He is very patient even when faced with a 12 year old asking how would he know lol.

 

The problem with other people even her Dad not understanding her AS means they have always thought i didn't discipline her, when in actual fact i have always been strict but choose not to cause a scene in front of others.

If my daughter was distressed when she was younger i would take her home.

I knew from a very young age that she had AS and acted accordingly.

Others though just saw the meltdowns and difficulties as spoiled behaviour, even now with her diagnosis it is still a struggle but i am sure everyone here knows that scenario.

The transition to secondary school has added a great deal of pressure and added to that yes the hormones and its a difficult time.

 

Again though it is school life being the pressure and homelife taking the brunt.

 

I hope now that things will start to change, as i really don't think she can cope with much more and this is my biggest worry.

But, my resolve remains the same that in order for it to work she has to know that i will not tolerate the awful behaviour and abuse she is giving me.

The part i think that is hardest is realising she doesn't have an off switch, if that makes sense?

She wil test the boundaries and never settles for the response when she is in this state she just keeps going and going to danger levels.

She never accepts that i am her Mum so she has to abide by my rules, and always has to take the long road of realisation.

 

Mumble, i don't know if i had said this before but what you are achieving gives me hope.

 

When my daughter was diagnosed The Dr said that my daughter was capable of almost anything, she had a very quick mind and as long as i kept her as stress free as possible she could achieve whatever she wanted.

This has always given me hope, he said she would be a very productive adult with a lot to offer, but to keep in mind her stress levels were her biggest inhibitors, more so than any sequence or rhyming or repetition that she struggles with.

She is keeping up with her peers and with a limited support will do well.

 

You, and all that you are achieving and the fact you share your struggles gives me hope.

 

So thank you again

 

Take care,

 

Nic x

 

 

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