son been diagnosed with autistic spectrum disorder DLA

sweetangel63

blue_monkey wrote: »

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

the clothes issue could be a sensory issue. children with autism can have problems with sensory. such as touch, feel, sound, light. etc.there is phone number to request for the forms, not got it to hand. Thomas has a social and communication problem, repetitive, lack of undetstanding and no idea of danger. short attention span, always on the move, list is endless. He is 4 next in feb. Not sure what is happening for full time school yet. getting statmented, long process.
anyway i hope you get a dianoses soon. sounds as its not a naughty child thing but a learning difficulty.Also if u could get advise from health vistior for help filling in forms as they are not the easiest of things. I got help. would of been stuck otherwise. diary is good. the worst day is a good example.

As well as my sons dianoses i just got dianosed with dyslexia...at 27....

Sarahsaver

I have been getting DLA long before we began the diagnosis process. It IS all how to do with how you fill in the DLA forms.

My son cannot stand the touch and sound of flour which is weird to us but perfectly understandable to him, there are other noises he doesnt like and he doesnt like my leather gloves, so i have to wear suede or knitted ones or remove my gloves if i want him to hold my hand.

Nikki

blue_monkey wrote: »

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

Hi, just stumbled across this thread and your posts stood out. My oldest son is 12 and has Aspergers. He was misdiagnosed as having ADHD when he was 7, it took me 3 years to get this far. I knew something didn't add up and although he did fit most of the ADHD criteria, I knew CAHMS were missing something as the major problems didn't fit ADHD. I got so fed up with them attributing his behaviour to ADHD(over 4 years) I wrote down everything that was odd or a problem - no matter how small and read it all out at the next meeting with CAHMS and hey presto the light finally went on. He was dx with mild Autism at the next meeting a month later, he was 11 by this time. Go with your instincts, you're his mother and you know him best. He sounds ASD to me.

tarajayne

PasturesNew wrote: »

She's not having tantrums. YOU'RE not letting her know what to do next!
Gets the brain in a spin. You get stuck, like a record stuck in a groove.
The "tantrums" are meltdowns. The information wasn't provided/available .... like a dalek it's the point where they get confused and spin/explode.
You HAVE to know what's next.
Non negotiable.


And, the next bit has to be known quite a long way in advance .... because there's all this other stuff to deal with that's going on, like the interruptions (sensory interruptions that throw your methodical thoughts out), sudden movements to track/be aware of and compute. And ... well, I could go on. 1000s of things are going on in my head when I am doing things! The inner dialogue that's telling you what you're doing, what to do next; tracking everybody/everything that's going on around you; planning ahead any changes you will have to make if you spot something going on. But it's too big and complex to explain here.... I could. But I am reining in my "one sided verbosity".... really, I could type a chapter on just 2 seconds of what's going on in my brain at any given point and why.

And on top of all that, as an adult, I am conscious of "appearing normal" so every movement is calculated. Everything I do is fake. If I walk in a room even the way I walk, hold my head, half-smile is false and calculated to "appear sufficiently normal that it doesn't attract attention".

I swear, it's like spending your life as an undercover alien agent whose secret mission cannot be discovered; yet you are in a room of hidden agents who are looking for the aliens.

She is not autistic, my son is though, she is nothing like him and certainly not on the same spectrum. Her difficulties are far more complex and are routed from major bad treatment. THEY ARE most definately tantrums and I have had major help from behavioural specialists about dealing with them, the board being one thing. Being soft with her when these happen as has happened in the past has done her no favours, she tries to dictate everything that happens and this has made her use these wobblies to get her own way. She is however special needs in quite an extreme way and after a few months in a classroom I have realised how many children are, although some only very slightly. I am lucky enough to work in a school that really cares for which I am very grateful and would say to every mum on this thread well done for fighting for your child because you would be amazed at how mant parents refuse to have their children assessed for extra help because they do not want them to be special needs. Would like to say to PasturesNew that the now and next board can be used for different reasons, yours being one, and I cannot imagine what it must be like for you but for this little girl who does not want to do her work could you imagine how horrible it would be for the teacher to tell you every 5 minutes that you must finish your work, its a non-verbal way of being firm with her, I care far too much to want to upset her but also know how important it is to give her bounderies. You tried to make it sound as if I had not considered her feeling which is what I spend the whole day doing. Every child, even every autistic child will have differnt problems, what works for one does not necessarily work for the other. I spent years trying everything with my son, some were great, some were crap. Some of us have children who are born needing extra help and if they are lucky enough to get mums who will stick their neck out they will be ok, as my son is now proving, other children have things happen that then make them become special needs and although these problems are completely different they are no less needy. I would like to be able to say she was autistic as that might be an answer but its more like she has shut down for other reasons, and they would break your heart!!!

Sarahsaver

Well, I have some good news, sort of.
Today i went to see the psychologist re. ds1, for the results of all the test he has done recently. We are getting somewhere AT LAST.
he has them baffled
he has an 'outstanding' I.Q. score when tested on verbal ability.
His organisational ability measures at a below average I.Q. level. It is official. He IS an enigma :eek:
I completed questionnaires regarding aspergers and ADHD, and he is to be observed in a couple of weeks' time. He has just turned 8, my concerns about him began before the age of three. it has been a long struggle even to get this far but if you are in my situation get help asap, do not give up badgering people, and read up on the subject. I have had people tell me i am an over anxious parent, professional people, but now it is confirmed that he HAS problems by these test results. Who wouldn't struggle with exceptional intelligence but serious deficits in organisational skills?