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So desperate :( have hit rock bottom with statement process, any help appreciated :(

Midnight

Hi.. I have an 8 year old wee man with Asperger's/HFA and a borderline visual impairment in a mainstream environment, I also believe he has CVI (but we have an uncooperative eye doc who says it's 'just his ASD') and severe Dyslexia and Dyscalcula (but they won't test until he's 12 apparently)

I had thought the statement process was going well. We had to appeal once with further information, once we got it it progressed well. We just had the final appointment - the medical. We're waiting for the typed notes to get to the LEA and they will be sending out a provisional statement - our request was very simple - that he requires a specialist ASD provision (there is an ASD school ages 5-19, Abbots Lea).

It has been a five year uphill tooth and nail roller coaster of a battle to get this far. We've been misled, downright lied to, and had conflicting 'facts' bandied about every step of the way and it has nearly broken me. (I also have a systemic autoimmune disease so..meh!)

I called for an update today - it looks like they will be happy to name the provision. But then the whammer - 'I'm sorry to break it to you, but you do know there is a 2 year waiting list for Abbots Lea, if not longer? Did no one tell you?'

Cry

He won't even be in junior school any more by the time he goes.

I'm SO desperate I will do ANYTHING to help him - does anyone know what on Earth I can do?! We have been refused a 1:1 assistant due to there not being a physical/severe behavioural issue. There is no other ASD accredited provision.

Can I volunteer as his 1:1 assistant myself in school for three days a week? Is it legally allowed? I have run out of options. I don't know who/where else to go. 

I will be homeschooling him until he can go if I can't fix this somehow. I'm trying to do my degree and become a teacher so it will be a massive sacrifice to our future as a family ... and also my wellbeing (he is full on!!!!) this is just a nightmare. 

Also, is there any kind of mental health support going?! I don't want anti depressants (yuck) but this is really getting too much.

Thanks so much Cry

PS - he is receiving lliterally nothing in school at the moment. The class teaching assistant has been cut down to two days a week and isn't even 5:1 when she works with him. He's basically sitting there twiddling his thumbs in a state of confusion. We hve been told that he will continue receiving nothing even with the provision named, until he can go!!!!!!!

Parents

  • Thank you Smile

    We haven't received the provisional statement yet, so I can't appeal - but seeing as we only asked for the school provision, I can't see them suddenly adding something else to it...

    I'm more than happy to appeal, threaten, annoy the boss etc until they take notice...but... I've got to the point now... I don't know what to ask *for*!

    We can't do anything about the waiting list. And we've been told there's no way we can get  1:1 - there doesn't seem to *be* anything else. I don't feel like I've *got* anything to throw at them!

    I'm going to call the NAS education rights phone line today..  last time I appealed I knew what we were going for, but now I don't have a clue.

    I'm going to ask school today if I can volunteer to be his 1:1 in the meantime - but I'm terrified they'll say no.. I have a 'let me fix it' mentality so if this plan falls through, I really have nothing. Although this is far from being something I ever wanted to see myself doing.

    I feel like I went to battle against an army in a mechanical suit and a huge armoury of weapons, and now after 5 years in the field I'm reduced to a chopstick Cry 

    We have been ignored, and then dropped by every service we've ever encountered and we are literally receiving no further help (aside from DLA! Thank goodness) than 5 years ago.  

Reply

  • Thank you Smile

    We haven't received the provisional statement yet, so I can't appeal - but seeing as we only asked for the school provision, I can't see them suddenly adding something else to it...

    I'm more than happy to appeal, threaten, annoy the boss etc until they take notice...but... I've got to the point now... I don't know what to ask *for*!

    We can't do anything about the waiting list. And we've been told there's no way we can get  1:1 - there doesn't seem to *be* anything else. I don't feel like I've *got* anything to throw at them!

    I'm going to call the NAS education rights phone line today..  last time I appealed I knew what we were going for, but now I don't have a clue.

    I'm going to ask school today if I can volunteer to be his 1:1 in the meantime - but I'm terrified they'll say no.. I have a 'let me fix it' mentality so if this plan falls through, I really have nothing. Although this is far from being something I ever wanted to see myself doing.

    I feel like I went to battle against an army in a mechanical suit and a huge armoury of weapons, and now after 5 years in the field I'm reduced to a chopstick Cry 

    We have been ignored, and then dropped by every service we've ever encountered and we are literally receiving no further help (aside from DLA! Thank goodness) than 5 years ago.  

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