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just new need advice

so proud

Hi guys only joined so plz be gentle ,thought i would join in after reading great advice and support from u all .

i am in need of some advice , i have a 12 year old boy 2years ago found out he was dyslexic after we took him private as school didnt want to know .the school he was at in primary we had to fight all the way and it did get tough for all of us .he was referred to autism clinic about 1 and 6mths ago after what seemed a long time they found although he has strong traits it wasnt enough for a diagnose .he was however sent to adhd clinic who did diagnose him ,he has been on tablets for over a year now .when we first took his tablets it took 10 days and gosh do we have a different child in some ways .since starting high school and now getting help, support and on his tablets .he is scoring so well mostly 88% on most tests .he can think better sometimes, not move as much and sometimes  he now makes better discisions for himself .

what is happening now is although he is doing well he still has issues that havnt disappeared with his tablets .still has routine problems if changed lots of melt downs if anxious really cant cope socially keeps head down and u have to ignore him or he goes off on one then he comes round ok  in november he was re-referred back to the autism clinic by his doctor .my fear is when we go back to autism clinic and told no where does that leave us .its as if u get a no and ur forgotton about but it doesnt mean everything goes away we still have to use ways to help him cope .

has anyone else gone through this i just cant understand how u need ways to cope everyday but told no  

Parents

  • Hi Oldmum - I think anyone reading your post would feel moved by your obvious love and commitment to your son.....it shines through.   You shouldn't have to worry but you do.  There really wasn't anything for them back then, was there?  It must have been very hard on you all.  I don't think there's anything I can tell you but I feel strongly that things should be better for all of you than they presently are so I'm going to comment.  Also because others will be reading.

     My son was diagnosed in the 80s before he was 3.  He was given a place in a nursery + then a place in an autism specific school.  The assessment took a number of months.  I complained about that, but when I read some of the posts on here I think our experience was quite smooth compared to what others have to go through.  

      Your post is also a salutory lesson for all those thinking about the future.  Whist no care provider is perfect, as you well know, it's a fact that some are better, sometimes much better, than others. Same for social workers.  My son has a good autism-specific care provider. He has a helpful social worker.  All the budget cuts affect everything + will so year on year so we have to be vigilant to protect what we've got.   My son has a better quality of life now than he had with his previous care provider.  He is also in an environment more suited to his needs.   I don't know what your social worker is like but if you haven't already you should raise your concerns about your son's care.  If need be ask for a change of care provider and ask to be involved in the shortlisting and selection process for that care provider.  It beggars belief that they haven't got anyone to play a game of cards with him.  Does he use a computer?  There are card games on them.  You could also ask for a review of his medication.  As you will also know, medication is no substitute for good quality person-centred support.  It used to be called "the chemical cosh" in elderly persons's homes where staffing + training was inadequate. 

     I really hope things improve for you all. You're absolutely right when you say you  should now be able to hand over his social as well as his basic care.  

Reply

  • Hi Oldmum - I think anyone reading your post would feel moved by your obvious love and commitment to your son.....it shines through.   You shouldn't have to worry but you do.  There really wasn't anything for them back then, was there?  It must have been very hard on you all.  I don't think there's anything I can tell you but I feel strongly that things should be better for all of you than they presently are so I'm going to comment.  Also because others will be reading.

     My son was diagnosed in the 80s before he was 3.  He was given a place in a nursery + then a place in an autism specific school.  The assessment took a number of months.  I complained about that, but when I read some of the posts on here I think our experience was quite smooth compared to what others have to go through.  

      Your post is also a salutory lesson for all those thinking about the future.  Whist no care provider is perfect, as you well know, it's a fact that some are better, sometimes much better, than others. Same for social workers.  My son has a good autism-specific care provider. He has a helpful social worker.  All the budget cuts affect everything + will so year on year so we have to be vigilant to protect what we've got.   My son has a better quality of life now than he had with his previous care provider.  He is also in an environment more suited to his needs.   I don't know what your social worker is like but if you haven't already you should raise your concerns about your son's care.  If need be ask for a change of care provider and ask to be involved in the shortlisting and selection process for that care provider.  It beggars belief that they haven't got anyone to play a game of cards with him.  Does he use a computer?  There are card games on them.  You could also ask for a review of his medication.  As you will also know, medication is no substitute for good quality person-centred support.  It used to be called "the chemical cosh" in elderly persons's homes where staffing + training was inadequate. 

     I really hope things improve for you all. You're absolutely right when you say you  should now be able to hand over his social as well as his basic care.  

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