son been diagnosed with autistic spectrum disorder DLA

Sarahsaver

I went through the child and adolescent mental health service, as we had a referral following a behaviour support 'initiative' (waste of time) but then persisted, after a nasty psychotherapist said it was all my fault and then reported me to social services because i refused to go back and see her again, then got another referral cos DS tried to jump out of a window and we had to call emergency services who set the ball rolling again...and on and on it goes!

russetred

I just find this so incredible I had to suggest autism as a diagnosis for my son 20 years ago and no one had heard of it.Explaining to friends and family was at times fraught or bordering on ludicrous.Now it's everywhere and everyone seems to know a family that is affected by it.The only constant thing is the dire way families are treated trying to get a diagnosis and the fight with authorities to get what they are entitled to.Best of luck!

sweetangel63

hi all
have written a letter for my son to have a saturatory assessment, he is due to start school in Sept, looking at a special needs nursery but he needs a SEN statement. I am worried with his poor attention span and always on the move, he dont sit still evenwatching tv he moves.
I got dianosed with Dsylexia last week. Was college who thought i had so had to go throught these tests and got a score of 2.6....
heard that dsylexia is connected to Autism.....something to do with a gene or something like that...
Just got my Carers allowance, 6 months back pay.....
anyway keep in touch xx

quietheart

best of luck with statementing, keep asking for advice and other peoples views, don't let them pull the wool over your eyes. Get a copy of the SEN code of practice, when you start quoting it people sit up and listen.
let us know how you get on.

quietheart

Sarahsaver wrote: »

I went through the child and adolescent mental health service, as we had a referral following a behaviour support 'initiative' (waste of time) but then persisted, after a nasty psychotherapist said it was all my fault and then reported me to social services because i refused to go back and see her again, then got another referral cos DS tried to jump out of a window and we had to call emergency services who set the ball rolling again...and on and on it goes!

We also had a horrendous psychotherapy experience with my then 4 yr old son. I think we need therapy to get over it. There were 2 of them who kept asking my silent son why he hated his mummy so much!?? It was like a bad sketch show. We went for 4 weeks before writing to say we wouldn't comply with their practice. Outragous. I really sympathise, hope your lovely boy is doing better now no thanks to them.

D&DD

For any of you still fighting 'the SEN system'(*does it ever end though???* ):rolleyes: I can recommend How to Be A Velvet Bulldozer its available on amazon usually great book written by an adoptive mum of four kids all found later to be on the spectrum :eek: Sandy Rowe I think her name is..will see if I can find a link ..mines out on loan!!

blue_monkey_2

Hi everyone,

I've just come across this thread and having a read something things have stuck out for me.

My son is 3 (4 in Feb) and the Nursery (linked to the school) have been having problems with him and he has been assisgned his own classroom assistant now. I know this is about DLA thing so I apologise for hijacking this thread, it is more about some information and where I would find it.

I have taken my son to the doctor and he has referred him (urgently 3 weeks ago, LOL) to the local ADHD Clinic, I am still waiting for an appointment but I don't think it is ADHD, Initially I thought he might be Dyspraxic but now maybe Aspergers also/as well.

He is always 'naughty', does not know where the boundaries are. There are too many things to mention, is it wise to start making a diary now as and when I think of them so I am not talking blind to the people at the Clinic. Anyone had experience of these at all and what to expect. My son is very in your face with other children, even if they do not want to know he is always pushing and pushing, talking to them asking questions until they are screaming at him to go away, he talks to strangers, he runs off at every given opportunity, runs in the road, goes up to dogs to stroke them despite me telling every time he must not (This will make you cringe but a rotweiler on a lead 'went' for him the other day and he jumped - do you think this has bothered him? No, not in the slightest, he still runs up to dogs, ARGH!!) etc... I could go on I guess, but I wondering where I look for more advice on getting a 'diagnosis' because I've been to the doc and HV. Do I just wait to go to the clinic and they refer me from there. All I want to do is find would what is 'wrong' with him and how I deal with him. I can scream at him until I am blue in the face not to run off or not to run in the roads but he just does not listen to me. As a result I don't go out unless I have someone else with me or unless I have him secure - it used to be OK going shopping and the like but now he can get out of the buggy and shopping trolley so now I don't bother and do it online. I feel bad about having him in the buggy at almost age 4 as he is perfectly able to walk (his mobility is fine and he is very clever), does anyone else do this? I am tired of my husband shouting at him for the smallest thing despite me asking him not to, and am tired and exhausted by the whole thing lately. When he was smaller things were easier to manage and I would have just have had him down as a bit full on but lately, maybe because he is getting bigger, he is getting harder and harder to handle and manage because I just feel like I can't control him. When he has one of his tantrums he just throws himself down as a dead weight and refuses to move. Even if I was to walk away he would not care I was gone. Sometimes I don't get it as the usual 'psycological' stuff that you use on kids does not work on him.

I don't really have anyone to help me with anything - apart from my husband and quite frankly, he just does not have a clue on how to deal with him other than by shouting at him (another issue!!)and threatening him with time out which clearly does not even work so i don;t bother with, so, ultimately I won't leaving him with OH for long and, inevitably, he ends up being with me and that means I can't go anywhere - vicious circle. I avoid social situations if I can help it. I can't relax or sit in peace as I know he can turn and hit someone in an instant or try and be too friendly which the other kids don't like. We went to a wedding a few months back and he just spent the whole time running around and being disruptive, we went as soon as we could after the meal which I felt a bit bad about but there was no way we could stay. And despite my OH family being there none of them offered to even help look after him so I could not even eat dinner in peace. I am just tired of feeling like I am dealing with him on my own without any help. Oh, and does anyone elses kids have an obbssion with toilets? Is this just one of his 'things'? if we go somewhere he has to go to the toilet every 5 minutes, you can't say no incase he needs to go and all he wants to do is flush the toilet and wash his hands. He also comes out with these 'stories' about things we or he has 'done' which he hasn;t, but does he think he has or is he just making up stories? He will talk until the cows come home but it just seems to be nonsence made up stuff (I just alking along saying yes and no and hoping I've said it in the right places, LOL).

Anyway, I am waffling, can someone point me in the right direction for getting advice on how to deal with all this and for making my day easier. This is all new to me, it is only as he has become older that things have got harder and harder to deal with it was fine before and just part of what comes with being a parent. I sometimes wonder if I feel like I am 'looking for an excuse' for not being able to deal with him and that makes me feel bad. It doesn't end does it??

Ooh, I did read about carers allowance back there with interest though, I have my own business since my daughter was born but because he needs so much attention I have had to put that on the back-burner and am not getting so much done these days and instead of building the business it has had to be reduced as I don't have the time to make anything of it, speak to suppliers (I don't even think about using the phone while he is here!!), my 'spare' time is just getting the orders together rather than making more money than I can now - so i guess his behaviour limits what I can do. Is this the kind of thing that carers allowance replaces? I guess it sounds daft but I can never imagine getting someone else to try and look after him as he is so full on, I guess he does need the constant attention, the school have recognised this I guess as they gave him a CA. I am just looking into everything at the moment, the more I read the more I think 'that sounds like him' or 'He does that'. Because I can't work during the day while he is here it just leaves evenings and I have to work every evening - but that gets disrupted as he wakes up screaming a lot. I am tired. Can someone offer me any advice??

Sorry again for hijacking this thread.

quietheart

((((Hug)))) bluemonkey - you must be exhausted. Aspergers, ADHD and Dyspraxia are all linked so he could have all three. Keeping a diary is a great idea and gives you a clearer picture of how much pressure you are under. If I were you I would request the DLA forms, you won't get carers allowance unless your son is awarded middle or high rate DLA. The forms take forever to fill in so the sooner you get started the better. The diary would be good evidence for the application as well.
Don't try and take on too much, maybe make a note of the things about your son that fall under dyspraxia, then aspergers then ADHD and give them to the person doing the assessment.
Best of luck with it and keep talking, it'll get easier.

blue_monkey_2

rovers wrote: »

((((Hug)))) bluemonkey - you must be exhausted. Aspergers, ADHD and Dyspraxia are all linked so he could have all three. Keeping a diary is a great idea and gives you a clearer picture of how much pressure you are under. If I were you I would request the DLA forms, you won't get carers allowance unless your son is awarded middle or high rate DLA. The forms take forever to fill in so the sooner you get started the better. The diary would be good evidence for the application as well.
Don't try and take on too much, maybe make a note of the things about your son that fall under dyspraxia, then aspergers then ADHD and give them to the person doing the assessment.
Best of luck with it and keep talking, it'll get easier.

Hi Rover,

Yes, the list is a great idea, I never thought of that, I've made notes and given them to the HV and doc, I guess it would be better to say that he relates to all of these things and give them a list.

So, I am a bit confused by what you are saying though. Can you get DLA even if you've not bee diagnosed with something on paper?? I don;t understand all of these benefit related thing, the other thing is that soon we will be homeless (possibly in a hostel) so we won't be at this address. We will be getting our mail forwarded so can that still be done? I guess that could be an idea, what would extra money be for though? LOL, maybe clothes considering I usually have to buy 3 sets as he REFUSES to wear anything new - he even still wears his pyjamas aged 9-12 months (don't laugh, I've even tried hiding them cos I haven't the nerve to actually put them in the bin, he goes ballistic if he knows I have done the washing and he can't find them. The things we do to keep our kids happy!!) If I get him new clothes we have to fight him into them between 2 of us just to see if that fit. Does anyone else have those problems, inevitably the ones that don't will end up on eBay for a fraction of the price. I got him some from the GAP Outlet (they have to have the waist adjusters as he is so skinny) and he refused to try them on in the shop so I just held them up and got them and once I had fought him into them they are just a little too small. gutted. We won;t be going back to the outlet and so I'll get a few weeks wear from those. Lots of little things frustrate me and then I feel bad as I feel that I should be able to deal with silly things like that.

I will keep the diary from tomorrow first thing then - today there are decorations to put up!! And where would I get the forms from though. Thanks for the advice though, would have been nice to think I could have stopped working completely while he is not at school full time. Never mind, not long to go until September

quietheart

DLA is for children who need additional help to the 'average' child of their age. Having a diagnosis isn't necessary but can help. You decide what the money is best spent on. It could be transport, it could be a holiday to reduce the stress load, it could be anything really it just helps to take the pressure off. I think for most people it makes them able to work less hours or not work so they can concentrate on their child's needs.
Don't feel bad for getting frustrated, you sound like you're under immense pressure. Try not to forget about your needs as well, you need to look after yourself first so you are fit and able to take care of your son's needs.
Take care.