Desperate - Help! (UK)

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Hi there, well that's what I thought, but even though I told them how ill it's been making me they still said the same about no resources and probably not being elegible, so I guess not - unless I am prepared to put up a big fight. At the moment, I don't have the strength sadly.

Family needs are assessed by the same department as children's needs in the UK because they are so closely connected - the two assessments are often done at the same time.

You do have a right to a proper assessment but they won't do it if they can get away without.

They are right to prioritise severely impaired or neglected or abused children over children who can function more comfortably and safely in the world but challenging behaviour is definitely a reason for considering an assessment too and they are playing with your guilt buttons if they are telling you that they don't support less severe cases, I know they do and it is not the severity of the child's physical and emotional needs alone that determines the level of support but the severity of the circumstances they are living in and a living in a family close to breaking point due to the stress caused by her challenging behaviour I would definitely count as putting her, and the rest of the family, at risk. If they get a second referral they will take it more seriously though.

Incidentally, your other child could also have an assessment as she is affected by your youngest and she may also be counted as a sibling carer and sibling carers are entitled to their own support which is usually the occasional trip to burger king (or in my snotty daughter's case, at 10 years old when offered a burger and chips -"I don't think so, you can take me to starbucks! - somewhere she'd never been, lol!) or a quarterly day trip run by university students which usually involves rounders or frisbee and which didn't impress my dyspraxic daughter either. (Dot sounds horribly spoilt from this, she's not, she's a real sweetheart it's just her aspie ways).

Good information. In which case, when we finally get to my younger daughter's referral unit I will start insisting and maybe get the GP involved too. You are all such a lot of nice and helpful people! Only other parents going through (or having been through) similar things can understand just hopw awful this can be.

And don't we know it!

When someone calls for help some will shrink from exposing their worst experiences because it brings back the nightmare but others will come out just because they can't bear to see someone else going through what they did and tame the nightmare by helping someone else fight it, so it's all self-interest really! But honestly, it does sort of work like that - there is a sense of relief if you can stop it happening again or help someone else stay sane through what almost drove you over the edge.

Just another thought from my deep well of memories - our MP was actually quite useful and put some pressure on the council to support us. Local councilors will sometimes be supportive too - the lib dems are especially good at case work in our area though the ruling party has more clout generally.

Thanks, that has occurred to me too, if they ignore us too much I will start contacting councillors to see if they can help. And I really appreciate that you have had to rethink painful memories to help, I know it can't have been easy. I'm like you though, if I've been through something and I see someone else suffering the same thing ,especially if any injustice is involved, I want to help as I can't bear injustice! It's always that much harder when it's yourself though and you are frazzled.

For those of us who face their nightmares this way it is cathartic so don't worry about anyone else - remember we choose to help you and can choose not to if it gets too much for us.

Perhaps teaching your daughter aspects of zen such as:

one of our strengths of human beings is improvising, and not so much super planning.

Here's a more recent reference for PANDAS.

Of course a lot of different things can cause the same or similar group of symptoms. And even if your daughter can be classified as full fledged rapid-onset OCD, the odds are apparently still only approximately 50-50 that she has PANDAS (strep as indirect cause).

The problem with that is her age, she's only 7 and whilst being highly intelligent, and sometimes shockingly philosophical, she hugely lacks empathy (although also has a lot of emotional dysregulation and can cry for England if she sees me upset) and isn't interested in listening to things like that. I tried to explain to her today that it isn't fair on mummy to scream at me and treat me badly, she glazed over and changed the subject. She's very focused on the things that currently obsess her but if it doesn't hold her interest she won't listen.

Just had her giving more blood curdling screams after not getting her own way at bedtime and I'd gone downstairs, which came after I bent over backwards to keep her calm, sweet and happy when getting ready for bed. She says she wants something one way but then lies after and screams when you try to give her what she wanted. I think she's just so panicked about going to bed she loses all reason. So our neighbours are probably hovering over the phone to complain to SS again.

I was getting worried about her mental health earlier in the day when she started going on about "people that visit her" and a fantasy land she wants to go to, I started wondering if she was hearing voices. A bit later though she explained she'd made it all up (it had been immediately after a bit of a meltdown) so I was very relieved, but sometimes she comes out with things that start to scare me, I mean in respect to her mental health, until I find out later what she really meant.

That's interesting. Although her behaviour has been like this for a long time, it's got slightly worse later but I've read from reputable sources that Asperger's often gets worse (or more obvious) as the child gets older. She's had AS behaviours for years in retrospect (almost a classic case), and she's always hated being away from me. Her handwriting has if anything improved and her learning is all great, none of this has suddenly developed, it's all been there but has become worse, which may be partly because she's aware of the behaviour herself now and frustrated that it's there. She's made little comments which lead me to believe that this is at least definitely partly what's going on. The meltdowns are often sensory but more and more they are also anxiety related. Thanks for the info anyway.

7 is a significant age in child development - it is around then that children enter a more complex social culture and when they begin to move from the hands on approach to the abstract in thinking patterns although they're not anywhere near formal abstract thinking (unless their brains are not typically developed in which case they can get there early). Its also when gender separatism in play really kicks in (does your daughter play more with boys? They may be rejecting her). They also change in the type of play they enjoy.

It is also an age when ASC problems hit hard - many children are diagnosed around this age because they simply can't keep up with the growing complexity of the social interaction around them, the expectations of school (I know you home school but the academic expectations may still be there to some degree) change dramatically as children go into KS2 and we also have an inbuilt system over which we have no conscious control which makes us change our expectations of children's behaviour and ability to take responsibility according to their size rather than their actual developmental age and in AS this can be disastrous as they are also so eloquent and seemingly adult so often because their development is not even across all areas but spiked with some areas being developed beyond expectation but others being way behind.

And it is very often the age when children who struggle with anything realise they are different - and others start to ostracise them for it (usually unconsciously because they are simply too busy going through all the developmental changes and taking time out to consider someone else is still only in the infancy of its development).

Yes I remember reading somewhere once that 7 is an important age in child development (even in 'normal' terms). I have noticed that her awareness has grown, and as she's pending an assessment I had to talk to her about the possibility of Asperger's so she had an idea what will be going on. I was also almost forced to tell her because her awareness became such that she started blaming herself and asking why she was like this. I had to explain that it wasn't her fault, there is a reason for the behaviour, that she still needs to try to control herself as it can't be used as an excuse, but we know it's not her fault and there are reasons she gets overwhelmed. It was just too heartbreaking seeing her worrying why she was different. She doesn't play with boys, she's a very girly girl as is her sister, so we tend to meet up with other girls. I do wonder if she were in school if she would play with boys though, as her sister went through that stage at 6 years old. I think girls with AS do often find that boys are less challenging socially as there is less chatter, it's more running round playing, so they can cope more.

I don't treat her according to size, because she's always had this babyish quality to her (which is adorable) so I help her with things more than I might do if she didn't have these issues and in some ways baby her (although not n a way to hold her back, more in a way that it's instinctive to what she can handle). She needs extra help most of the time anyway as she has so many fears, phobias, vestibular issues etc. She has suddenly started resenting learning, although I don't know if that's because she's copying her sister who loudly proclaims that she doesn't see the point in any learning. She copies her sister a lot, for instance her sister announced that there was no point in learning as she clears it out of her head every time she learns it, and since then she has made the same statement.

She does seem to be on the cusp of a change developmentally/neurologically, and I think the added awareness is scary for her, which probably feeds her anxiety. Although it's all mental rather than physical if you know what I mean, her physical abilities are not any different than they were before.

it's definitely a scary thing, discovering self-awareness.

They start off feeling they are different and then they realise that difference makes things hard for them and get to feeling it is something that's wrong with them.

AS isn't wrong, it is just different, and it comes with things that are more difficult but also it makes some things easier - she needs to understand she has strengths too if she is going to feel comfortable with herself and AS if she gets the diagnosis.

Plus, if assessment is difficult to face and process for us as parents, and we understand what's going on, just think what it must be like for our children at this age - they are just beginning to think there is something wrong with them and seem to be getting it confirmed; very, very scary.

I can only suggest you try to focus on the positives as much as possible with her.

An excellent book, aimed at adults and young women unfortunately, is Aspergirls by Rudi Simone. It is so full of warmth and faith in us as women that it's well worth a read and it has some very good things to say about valuing your strengths - even though it's not about 7 year olds, it may be very useful in helping you frame your view of AS for her.

There is another book by the same author called Asperger's in Pink: raising and being a girl on the autism spectrum - I haven't read it but if it is anything like Aspergirls it will be excellent and very positive and possibly more useful to you.

Thanks for the book recommendations. I have previously told her the good things she has as a result of AS, such as a good memory, attention to detail and intelligence, I don't think she's as bothered about a label as her sister is, in fact I think she's glad to have a reason to understand why she has her ways. I do think there is an element of "why me" even if she hasn't acknowledged that yet, or can't put a voice to it. Let's face it, I'm still thinking why me, too. Tonight she was a little bit better, so I'm grateful for small mercies. I will investigate those books. Have a good weekend!

Hello, I don't know if this would help at all, and it could be the worst suggestion you've heard....but I have AS and I have the same problem that your daughter does, with the racing thoughts at night. The only thing that I have ever found that has helped with them is playing a game in my mind...I don't know what it's called but I've played it while sitting around a camp fire with friends. It goes like this: You say "I'm going to the grocery store and I'm going to buy . . . A - Apples" (you would come up with a grocery item that starts with the letter A). Than you would say "I'm going to the grocery store and I'm going to buy . . . A - Apples and B - Bananas (or whatever)". Than "I'm going to the grocery store and I'm going to buy . . . A - Apples, B - Bananas and C - Carrots (or whatever)". You go through the whole alphabet adding items that start with the next letter, repeating the entire list you've made so far every time until you can't remember an item, than the game is over. It's designed to be a group game (like, you go in a circle and when it's your turn you add the next letter), but I play this by myself in my mind to get the racing thoughts to stop. It's entertaining enough to keep my focus, but boring enough to put me to sleep. Sometimes I get sick of going to the "grocery store" though, so I'll go to the craft store, auto parts store, home improvement store, etc. just to keep it interesting enough to keep my mind from wandering back to the racing thoughts. Honestly, when I focus on playing this game, I'll typically be asleep by the time I get to the letter G - whereas I could otherwise be awake half the night. Again, not sure if this could help, but it sounds like you're interested in hearing anything that people have found to be helpful. Also, I'm not 7 years old, so while a game like this is boring enough to put me to sleep, it might excite a child, I have no idea. Just throwing it out there.