my boy just diagnosed with ASD

Smile just found you , hope you dont mind me asking for any help as my boy  has recently been diagnosed with asd , where do we go from here?    schools a worry !!!! his needs come first he also has unilateral hemiplegic cerarble palsy he is 9 yrs old . we have a lot of problems regarding the home we live in at present  we ar ein a council house  and small adaptions have been done    ie rails  , split steps  , but they are very reluctant in helping us any futher ie toilet needed downstairs and a wet room , they are not helping us at all :(   any advice please  on who are wot to do x   thankyou aarons mammy xx

  • sorry i think i have replied in the wrong place Frown

  • hi there, thanx for your reply its appreciated , my Aaron does talk  although doesnt always understand what people say therefore i have to take over and explain in  slow speech to him over and over till he does!   He is still in mainstream school which have again applied for a statement before the summer hols and we are still awaiting the outcome he did have to have a accesed for this , but they dont know about his ASD as this has recently been diagnose, the statement is for his learning diff as he is drastically behing his peers in every aspect he also has dyslexia.  I recently spoke to the senco at the school who said she is arrangeing a  CAF for him not that i understand fully what this is?   The council sent a OT out after our Aaron's consultant wrote to them saying he needed a room of his own which she agreed but the council have no 4 bedrooms where we live , and have just recently  said a firm no to a adaptaion being put on the back of this house at present here, he does need a wetroom as he falls constantly in the bath and so i  or dad have to be with him and help him wash and get him out safely , toilet issues are a nightmare he cannot clean himself as he cant get his hand round to do so properly, so we clean him he also has bowel problems and is on 2 meds for this so urgencys a problem as we have 2 younger children and accidents happen ,  just rently after aaron's asd diagnosis i rang the council who sent another OT out to see aaron and the house she couldnt understand why his younger brother wasnt sleeping at night !!!  i had constantly told her Aaron doesnt sleep well and constantly wakes ellis up to tell him things during the night as he fees compelled to do so, are he comes and wakes us or his sister , also because of his bowel problem he's awake till  all hours and so are we, but poor ellis shares the room with aaron so he gets the full end of it all he has fell asleep in class he's so tired, she told me she was going to send a specialist health visitor out as she felt i didnt have my children in a routine for bedtime!!!!!!!!!!!!!!!!! i am so annoyed with the silly woman . and so fed up and dowm about everything , so tired of it all x

  • Hi - welcome to the siteSmile.  Sounds like you've a lot going on.  1st off :  you've come to the right place because there's lots of info via the home pg + also the posts so have a look around.  I always saying it's understanding how autism affects your son as an individual.  Does he talk and/or understand what's being said to him?  It would be useful to the posters if you could give us a bit more info on him so our answers can be more helpful to you.  2nd off : school.  Is he in mainstream or a special school + has he got a statement of educational needs to give him the support he needs.  If he does have a statement then it needs to take his diagnois of autism into account.  3rd off : housing.  Councils are short of cash thanks to government cuts affecting those who need help the most.  Even in the good times(!?) they would have thought twice about a wet room because of the cost.  Others may well be more knowledgeable than me, but if I was in your shoes I'd check out online disability sites for info (don't know if the nas has anything on this) + also ring up CAB for advice.  They are unlikely to offer you a move because a wet room would be hard to find.  There may be houses in the private rental sector with 1. Sometimes they were adapted + then that person who needed it passed away but the property can be hard to let if the wet room isn't in keeping with the rest of the house, such as having to go thru the kitchen to get to it.  But, as you'll know, unless other adaptations have also been made to the house then it might not be suitable + the rent may be higher.  You could also ring/email your local councillor (name should be on the council's website) to see whether they can help, or your mp.