Need Some Perspective

[Deleted User]

I am not saying your situation is the opposite of mine but there might be similarities. I leave you to make up your mind.

I have two children, one 11 and one 22. Both have ASD. I have recently been diagnosed. I have been regarded at times as a cause of my son's problems attending school.., by schools who in my opinion weren't prepared to react to either of my son's anxieties and so make school more accessible for them. So it was easy to blame my parenting. My suggestion is that I would try anything and everything to get them into school but can't physically carry them in kicking and screaming day after day. And to be honest, if I don't feel they are safe and cared for in school, I am not sure I want to until the latest issue is resolved because I have seen with my older son what emotional damage can be caused (he has now been diagnosed with anxiety syndrome). BTW all of us get IBS at times due to anxiety, which might explain the bodily functions thing. Both have to be persuaded quite hard to get in a bath. Both have problems eating (will only eat certain things). My older son had awful problems with nocturnal enuresis which caused him a lot of stress. Both have problems sleeping which can go on for quite some time, which affects my ability to think when its gone on a while and I'm getting a couple of hours a night if I am lucky. That doesn't include any of the things they get stressed over which can cause ructions. I love them desperately but life is not stress free lol and that can affect me.

This did not mean I made every attempt to resolve issues, but schools quite often don't help. Another thing that doesn't help is that kids often will say what they think the adult they are talking to wants to hear because they just want the conversation that is making them feel very uneasy to just stop (I have had this happen with both children more often that you'd expect). This can go both ways of course, so you have to be quite careful asking questions, putting check questions in to see if they are consistent.

My younger son's father has suggested that our younger son didn't have ASD and I was making him behave like he had ASD by saying he had. Then in 2015 (it took years to get him assessed) he was assessed as having ASD. My ex went in with our son and saw how he did on the tests and was a bit mind blown. Finally he could see that our son did think a bit differently, and react differently to things. Because I had another child with ASD I had seen similar challenges so I spotted something that needed checking (getting tested for ASD). Up until then I was trying to 'make money' by getting him diagnosed so I could claim DLA. Which to be honest was quite insulting. But it was said.

But his father still doesn't really understand ASD, is a bit old school and is of the 'if you don't like it, tough, its a hard world' way of thinking. He doesn't see what effect this attitude has on his son who feels guilty enough.

I'd advise you to be a little bit careful with assumptions. You may be right, you may not be. It may actually be more complex than you realise. You may be transferring anger you feel about how your ex is behaving to other suspicions you have. I am not saying you are.., I am just saying some things could be possible.

I know I like to plan ahead, and sometimes people with ASD can be a bit intractable and insensitive to the needs of others. So I suspect you need to get a mediator involved or an advocate for your wife that perhaps can get her to be less anxious and help her to resolve the issue over when they can visit and try to find a time table that fits in more with your lifestyle.

Otherwise I am afraid you will have to go the legal route.

But I am afraid I feel most sorry for your children. It must be an awful atmosphere to grow up in. They have ASD, possibly have an anxious mother, you have both been rather ill and unavailable for long periods of time. They must wonder whether light means day and dark means night, and who the heck is going to be looking after them this month and when. They are probably both hearing how terrible and awkward the other parent is as well either directly or through overhearing conversations with partners/friends etc. Not good. I suspect you both need some support, and perhaps family counselling. I realise it wasn't your fault you were ill, but from your children's perspective it was for a long time that Dad just wasn't available.., they may be wondering if they did something wrong, there are certainly going to be trust issues. You don't seem to be having these thoughts out of concern for your children, but its more to do with how difficult it makes YOUR life. I think both of you need to come across as putting your children first. I apologise if I am being unnecessarily harsh.

fishybusiness

One of mine used to refuse to go to school. Luckily school at the time was just around the corner and there was one occasion that I carried her with a bag of school clothes - school agreed they would supervise and make sure she was ok. So I carried her in, we had some private space and settled down. It was around that time both mum and I decided there was something really not right, and we went from there.

Always the worry of what is this morning going to be like.

Food - yep, textures, bits in yoghurts, meat, green stuff, lumpy mash, only eat one or two foods, crunchy stuff, even down to cooking smells.

Baths, bath doesn't feel nice, shower droplets.....

Re making money - mum and I both agreed on diagnosis, regardless of any DLA, tbh I didn't think about it, maybe mum did, I don't know.

It's difficult re assumptions, totally get what you are saying, for me I don't have the information I need as a parent. Yet when I have the kids they even talk about mum telling 'lies'. One if I don't assume, I have nothing apart from how the kids are with me, which is really different to how mum says, and two if there is information she isn't telling me, she cannot expect me to do what I should, so I feel stuck.

The children, yes, I haven't talked much about it from their point of view, I can't to be honest, the emotions are just too difficult to address, I am aware but it is so big I can't do it now, I need to concentrate on getting things sorted out.

I'm desperate to have my time with them, to see them happy as they were, and idling along doing their thing. My daugher is capable mechanically, engines etc, as am I, we have done loads together, and I really miss that time. My son, I miss evenings after tea, we play, we chat, we talk music, play chess, I just miss it.

This thread has allowed me to vent a bit, read some from other viewpoints, consider my own actions.

deannatrois - that is a long post you have written, thank you.

I think I have built myself a short term plan.

1) Forget the benefits - just leave it, it is clouding my judgement.

2) I've started in the last couple of weeks, maintain my active presence in the world my children live in - school, doctors, asd, and anything else - ensure the passiveness I had when poorly doesn't come back.

3) Get hold of school - I need to understand what medical info they hold, does it link well to everything I know about my children.

4) I have found a great online calendar I can use with my children, has phone apps too, which we can use to arrange visit days, change them, and it will help with how my work days pan out.

5) Take hold of the reins and arrange mediation to go through the other points I really need answering. I previously said no to mediation because my ex was running eveything and also keeping the kids away.

6)Wait for the doctors notes and work through any discrepancies before saying anything else.

7) Talk to school about support for the children, perhaps I need to go in for chat.

Oh, no 7 reminds me, mum is doing her teacher training at the same school the children go to. I felt at a disadvantage to getting support from the school because of this. Until......we had a meeting early this year with school due to low attendance - school were on my side and told mum the kids need letting go - it is written in the meeting notes. Since then school have called me about one specific issue, and agree mum and my daughter are co dependent and it is a problem. I feel I need schools help, but am not sure what and how right now.

SingleSue

fishybusiness wrote: »

It's difficult re assumptions, totally get what you are saying, for me I don't have the information I need as a parent. Yet when I have the kids they even talk about mum telling 'lies'. One if I don't assume, I have nothing apart from how the kids are with me, which is really different to how mum says, and two if there is information she isn't telling me, she cannot expect me to do what I should, so I feel stuck.

My youngest son swears blind he can do everything, that he doesn't need any help.....and then is unable to book an appointment at the doctors on his own, contact his lecturers, speak to strangers etc.

In his head he can do all the stuff, in reality he can't.

[Deleted User]

Yeah I have a similar problem. Older son is now 22 so an adult. His degree course is falling about his ears. I am an outsider now and Uni won't talk to me at all. He's on the point of leaving. It might be resolvable, it may not but I do know my son is unable to engage with any of the SEN services the uni offers. But no one will let me help. So I stand by, watching. Not helped by a gf with undiagnosed possible ASD and lots of issues she is transferring onto him, caused a few problems between him and me so I've just had to stand back and watch but are slowly rebuilding now. It doesn't end at 18, just gets different.

Jojo_the_Tightfisted

Perspective -

How would destroying your ex financially, taking away her mobility and potentially giving her a criminal record do anything to help the situation?

How would putting somebody who may very well still have the issues that necessitated the mobility component through reassessment, a fraud investigation and benefits stopping/the car being taken away/affecting her ability to pay the bills for months on end until she gets it confirmed she was the victim of a malicious report and the benefits are reinstated help anybody else?

How does minimising any difficulties she has had to deal with on her own with your children and putting a child abuse accusation out there help her or, by extension, your children?

How does convincing people that they are fine and don't need any help assist them in receiving any additional support they do need in school?

How was deliberately using a latex plaster (was it really latex, as they tend to be plastic or fabric?) against his skin when you had been told there was a potential allergy in any way responsible? Until the point you applied that plaster (if it really was latex, which is unlikely due to the vast numbers of people with serious allergies), you were acting like somebody who decides a suspected nut allergy isn't real and gives the child a peanut butter sandwich, ignoring the fact that the previous years' absence of anaphylactic shock could have been due to the parent being incredibly conscientious about not endangering their child.

In addition, older children tell tales and try to play one parent off the other. Children on the ASD spectrum are just as able to do that as anybody else - and, to make it harder, there's also the possibility that the features of their conditions mean that they could genuinely believe something is true because they don't understand the subtle nuances.


For example, one kid I knew claimed they were a slave in their house and had to do all the housework, cooking, cleaning and washing and were constantly being screamed at.

The truth was that they didn't wash, refused to put their dirty clothes in the linen bin immediately outside their room, hid plates of food, sweet wrappers and drinks under their bed to go mouldy, left used sanitary towels in the bedroom and took offence at being told that they were 13 years old, not 3 and therefore any clothes not in the basket would not be washed, if there were no plates, the food stayed in the pans until those plates were produced and washed up and if they refused to eat what they were given, they were welcome to cook for themselves and it would really be a good idea to have a bath or shower this week/if there was a particular flavour of toothpaste they were prepared to have, just say and it would be bought.

But in their teenage mind, thanks to somebody else (society? other lazy teenagers at school?) it was their parent's job to track down things that needed washing by smell alone, they were supposed to be waited on hand and foot because that's what mothers were there for and the suggestion of making their own choices and keeping clean was 'having a go'.

In addition, the kid concerned, whilst their mother was actively encouraging them to keep in contact and see their father despite his years of unreliability and absence, hated communicating and didn't want to do anything as inconvenient as leaving their TV and computer games to see their father, becoming enraged at the slightest suggestion that they should reply to a text or email. But the father was convinced that the ex was the one being difficult.


Quite frankly, you weren't there. You weren't reliable. You don't know exactly what your ex has had to deal with since you got ill - the effects upon your children of you being involved and then effectively disappearing/letting them down/not being available unless it suited you at the last minute and having to abandon their plans or routine to accommodate you (their perception, remember) could have been horrendous for them. And now they're old enough to have hormone changes, mood swings and to find out that if they don't reply to Dad or tell him Mum's being mean/lying, he falls for it hook, line and sinker and gets upset, thus feeling nearly as bad as they did when he wasn't there for them.



The truth is probably somewhere between the extreme I have suggested and your perception of how things are. To wade in and hit out at your ex, who no sooner had she become vaguely capable of managing, was left to deal with everything on her own and who could well still have serious issues affecting her, not quite as bad as they were before but still enough to qualify for higher rate mobility, well, it's not going to endear you to your children, is it?

Ames

SingleSue wrote: »

My youngest son swears blind he can do everything, that he doesn't need any help.....and then is unable to book an appointment at the doctors on his own, contact his lecturers, speak to strangers etc.

In his head he can do all the stuff, in reality he can't.

Children are also unlikely to understand the subtleties of benefit rules - enough adults struggle with it! Just because you can manage to do something doesn't mean you can do it for benefit purposes.

For example, if you can get dressed but it takes three hours because you have to rest between each garment, your fingers seize up because of buttoning your shirt, your back hurts because of bending down to put on your socks, and you can't then undress yourself at the end of the day because of fatigue, then although you can get dressed, as far as benefit rules you can't. You have to be able to do it reliably repeatedly and safely.

I'd suggest people with ASD are particularly prone to reading the questions literally and not looking into the rules behind them.



I also agree with everything in Jojo's post. Especially about how irresponsible it was to use a latex plaster when a medical professional had suggested an allergy.

TBagpuss

Focus on sorting out contact first. Speak to a solicitor as the starting point. Your children are of ages where their views will be relevant but it's not really appropriate for you to be expected to sort out arrangements with them directly, it would be appropriate to have a regular arrangements and for mum to be supporting and encouraging the contact.

It would be possible for you to apply to court if you can't sort out the contact, and a solicitor will talk you through the options.

For what it is worth, as Scotland is a eparate jurisdiction she would legally require your consent, or a curt order, before she could remove the children from England and Wales and take them to Scotland, although in practice if the younger was 14 and both wished to go it's likely a court would allow it,and if they were younger, a court would be likely to let her go subject to reasonable contact arrangements being made.

As a father with parental responsibilty you can also contact the children's schools and GP yourself, and perhaps arrange to go in to meet with their teacher and update yourself about how the school sees their needs and progress. from your perspective as a parents, surely it is most important to understand the children's needs and what sort of support they need from you in terms of routines etc?

Once you are seeing them regularly, if you still have concerns about the benefits position then by all means query it, but given how hard it is to get disability benefits it may well be that there is a genuine need but that they way it is expressed has had to be worded in a way which meets the 'tick-box' requirements of the assessment, so do move cautiously.

fishybusiness

I also agree with everything in Jojo's post. Especially about how irresponsible it was to use a latex plaster when a medical professional had suggested an allergy.

That is wrong, no medical professional has ever suggested an allergy.

It is like Chinese Whispers here, it was a 'possible intolerance'. Basically the GP wasn't sure and he suggested what it may be to be safe.

No tests were ever done, nor needed, and since then there has never been any sign of any issue - I have suggested we look deeper in to it to let our son know one way or the other. Ex won't go there.

The issue is that I don't want one or both of my children thinking they have something wrong with them for the rest of their lives, and acting accordingly, and actually there is nothing wrong.

If you Google Latex Intolerance, you'll find very little at all - most literature defines the allergy and its effects - that is my concern.

The rest I am digesting and will come back to.

fishybusiness

Mediation services - can anyone give me a pointer from knowledge or experience of the services I should be looking at.

It looks like some of the solicitors offer the service, or maybe link to them, also I have read the Relate website, National Family Mediation, plus a couple of locally based services rather than national.

Have not clue where to start.

mary_hinge

My child has ASD and receives DLA... when they award DLA the notices are all worded the same they list a number of reasons why one would qualify because they are the qualifying factors. Doesn't mean they meet the criteria for them all. My sons has bodily functions in his list yet he requires constant supervision to keep himself and others around him safe from harm.

I think you are looking at ways to upset the apple cart and make yourself feel better after being absent for some time.

My son will also tell people he doesn't need help, can do something himself or answer a question with a yes when he doesn't even know what has been asked of him. It is part of ASD and a well known thing. He would never describe himself as anxious because he doesn't understand the affects that are happening on his body. His answer to everything/situation is ' I feel funny'' or ''sore''.

I also think you are extremely irresponsible using latex plasters on a child that has been advised to possible have a intolerance, sensitivities vary vastly and can change depending on all sorts of factors - it is like playing chicken with your sons safety in my eyes.

The whole idea of PIP and mobilty payments for cars etc is to keep people mobile and functioning to a level as equal to those with out disability as possible... to cover the extra costs that come with having a disability. To suggest your Ex can do teacher training yet no longer disabled is naive at best. The world of employment is constantly being pushed in to equal opportunities for all with what ever reasonable adjustments that may require.