its taken a while but hello

hi my name is karen. Mum of 4 children. 2 diagnosed with ASC  and 2 who are under assesment. I first became familiar with Autism 6 years ago when my daughter who has just turned 10 was diagnosed, before this i didnt even know what autism was, i just knew that i had an extremely challenging little girl. My daughter went into mainstream school before diagnosis where we were told she was naughty and had difficulty learning and we regularly had to pull staff for excluding her from class activities needless to say my relationship with the school completley broke down. When we recieved a diagnosis things still did not improve, there was a complete lack of any classroom support for my daughter( except from the Autism Communication Team who managed to give my daughter a phobia of clocks from timing her so much) and i was told although they aknowledged that she needed support the funds were not available and by mid F2 we had removed her from school as she was just so distressed. I home educated  my daughter for 4 years where she progressed very well educationally( with no outside help or support ) and now functions reasonably well, untill last year after a lot of shouting and stamping my feet i finally got a SEN and she now attends a special school where she is very happy . Last year my son who is now 4 was diagnosed, obviously this time round i already knew and spotted the signs myself so got a diagnosis earlier than with my daughter. We started with my son in a mainstream nursery unit carefully chosen for the level floors and we took great care to discuss all the issues we had with the school berforehand. Due to his dificultys i insisted upon a classroom support initially for his safety which they begrudgingly gave. we had many team around the child meetings and were also given an outreach worker who was briliant. unfortunatley my son was coming out of school with bumps that no one knew anything about, fingers which had been trapped but no one had noticed and nappies which were so full they were hanging off of him. obviously with a support worker this shouldnt have been the case. Staff made it clear that although they had to change his nappies they didnt want to and made us feel comlpetely inadequate as parents because he was not toilet trained yet. when we raised these issues with the school we were told that we should think ourselves lucky as they didnt have to give him any support and they implied that if i took it any further the help he had would be taken away. When we got to the point where staff were implying that my son was hurting himself at home and we were blaming it on the school we removed him as clearly yet again the relationship with the school had broken down completley. We did try another school but were told by the headteacher they simply could not afford to meet his needs even if we persued a statement. i am reluctant to opt for special school as he would be with the wromg peers at the moment as he is a very bright little boy, so have really had no choice but to home educate again.  My youngest son is now under assesment and it is looking increasingly like another asc diagnosis. Needless to say we havent bothered with the mainstream school nursery this time and have opted for a private nursey where he seems very happy at the moment although he has only been there a few weeks. i am however still in turmoil as to what happens next as next september he is too old for the nursery and reaches compusory school age. My oldest daughter who is now 14 has been refferd for assesment and is having all manner of problems since starting comp  very similar to the ones i have read about on this site with kids of the same age.  so its not that im new to autism and what life is like to live with it, with no real support network or family to fall back on ive just been so tied up, frustrated, devastated and exhausted.

 

 

 

Parents
  • hi again happy days.  That's difficult when you didn't feel comfortable about the school+ ss came + went.  What was it about the school that put you off?  It's so important to get the right educational environment.  Day in day out, if you manage to cope, then you end up being your own worst enemy in relation to getting services.   Take it from someone who knows.  SS have their priorities + if you're not appearing to be in dire straits, then you'll be lower on their list for help of whatever description.   A gd sw is worth their weight in gold.  So many people needing assistance + not enough money/resources to go around.  It really, really makes me fed up. If I were you, sorry to sound presumptious, I'd still get the carers assess't.  If it says something like you need a break each month, then you'll be on firmer ground to access services.  If you're like me, you'll soldier on until you can't any more.  Then you'll end up cracking up in front of your sw or gp.  All because you + your family's needs weren't met at the time.  Sometimes we need to drop our public face (if you haven't already) + explain to all who can effect change for you, just how v difficult things can sometimes be. 

Reply
  • hi again happy days.  That's difficult when you didn't feel comfortable about the school+ ss came + went.  What was it about the school that put you off?  It's so important to get the right educational environment.  Day in day out, if you manage to cope, then you end up being your own worst enemy in relation to getting services.   Take it from someone who knows.  SS have their priorities + if you're not appearing to be in dire straits, then you'll be lower on their list for help of whatever description.   A gd sw is worth their weight in gold.  So many people needing assistance + not enough money/resources to go around.  It really, really makes me fed up. If I were you, sorry to sound presumptious, I'd still get the carers assess't.  If it says something like you need a break each month, then you'll be on firmer ground to access services.  If you're like me, you'll soldier on until you can't any more.  Then you'll end up cracking up in front of your sw or gp.  All because you + your family's needs weren't met at the time.  Sometimes we need to drop our public face (if you haven't already) + explain to all who can effect change for you, just how v difficult things can sometimes be. 

Children
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