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its taken a while but hello

HappyDays

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.

 

 

 

  • hello again,

     in answer to your question about the school, because it appears that my local ed authority seems to b so hell bent on getting as many autistic kids as possible into mainstream school regardless of the childs wellbeing both mentally and physically the autism specific school appeared to me to have been saved for the very worst cases, the children who dont function as well, there was no stimulation at all by way of pictures or any colour in the building and the kids were in effect isolated and working alone. And i was shown a room which was padded i was told it was used in behaviour management, an unfortunate choice of words i thought. Dont get me wrong i entirely understand that in the worse cases these children cannot deal very well with stimulation and may harm themselves  this is entirely appropriate. But this environment is not appropriate for my little boy who tries to be sociable is really quite a cheeky happy little chap and really enjoys stimulation.he is educationally very capable but has needs which the mainstream schools either dont want to or cant meet. The powers that be where i am seem to have missed an entire area of the spectrum when planning on educational institutions, you can either be extremley well functioning and manage entirely well in mainstream school ( at least thats what they think) or you can be low functioning not cope well at all and have a specialised environment. What about the kids that dont fit neatly into these boxes. its so bloody frustrating

    id really rather not consider the fact that i may crack up...god forbid!... i dont think im there yet.. thank goodness.

    As for the time for myself, if the ed sysem could get it right id get plenty of time to recoup and not feel so tired all the time, because my childern would be in school. i absolutley adore my children and i dont mind all that comes with them, its not the kids thats the problem they are who they are, its the people who claim to know and allocate funds and resources who annoy the hell out of me. the people who learn about it from a book who dont actually ever really experience the problems yet get to say how things affect the families that do live with it.

    yesteday my son was at the hospital, it happened that the commisioners who decide how funding is spent for these kids was in the unit . one of the therapists who is aware of the god awfull time we have had invited me to speak with the commisioner who has say on education. he is a gp apparently. obviously i jumped at this chance. i actually was introduced to him as someone who would like to discuss problems within education for autistic children he replied  "what problems this issue has already been sorted hasnt it" boy did i let rip.  this man actually had no idea how families are affected by the shambolic education system and its pretty pathetic distribution of funds and resources for these kids.  To cut a long story short he actually challenged me to find other parents and families in the same situation as im in, wholly let down by the education system shools saying they are meeting needs yet not meeting needs being told there is no money left in the pot to help your child etc ..etc.. before he would seriously look at what id said to him. it made me sick. i have all the time in the world dont i. i would love to rise to this challenge but where to start?

    you know its really good being able to say this stuff, thanks for talking to me, it helps when people actually do understand.

     

  • 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. 

  • hi crystal12,

    yes the provision in my area isnt really up to much., there is an autism specific school in my area but when i visited it didnt feel right.  The social services did become involved briefly with my youngest daughter, they fitted extra handrails around the house then vanished, more recently with my older daughter i asked them for some help, i did have a couple of visits but nothing much came of anything as they said im doing fine apparently they need more parents like me. Hilarious im frazzled!

  • hi happy days.   Welcome to the site.  Frustrated, devastated + exhausted are feelings I think we can all identify with.  I can see you're up against it, thanks to not getting the services you need, but from what you say, I think you are doing your best under v difficult circumstances.  As you say, you're lacking a support network + that doesn't help either.  I've been in that position.  You can feel v isolated, with everything on your shoulders.  My son always went to an autism specific school.  I think it was the best place for him.  He wdn't have survived in mainstream, not even primary mainstream.   The right environment for a particular child is so important.   Sounds like provision in your area isn't up to much....education + social services??  Are you getting any help from ss?  This site is a mine of info + there is a nas helpline if you are looking for advice on anything.  You can also ask for a carer's assessment via social services or maybe your gp, if you wanted.  Remember you need to look after yourself as well.