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Really struggling

NAS13999

My son is 9 and was diagnosed with Aspergers Syndrome when he was 7.

He is achieving academically and masks his anxieties at school. However he finds the school environment incredibly stressful and melts down once home.

Things have come to a head since starting Year 5 and he's started refusing to go to school and I've literally had to drag him in, on a few occasions he's run straight back out the cloakroom, luckily only got as far as me in the playground and I've had to take him back in.

At home the violence has ramped up and he's also been running out the house, he has no regards to safety when he does this and will run across roads without looking.

They have daily scores where each child puts a number of how they're feeling. 10 being the happiest. He regularly puts 1 or 2, never higher than a 5 all term.

Once in school they say he's "fine" ie he causes them no bother. 

We've had a meeting to discuss things with the senco and sen ta. We've now got a few things in place such as being dropped off and picked up from the school office, having a mp3 player to drown out the noise of the other children and being able to work outside the classroom if needed. I've been told though that he can't do that forever and has to get used to being in the classroom environment.

They say the Ed Psych won't see him as he's academically achieving and it "doesn't effect his education" likewise they won't get the Inclusion Support people in. I've been told in no uncertain terms that we've no chance of getting an EHCP.

We're waiting for a Cahms appointment.

Has anyone any advice please?

My belief is that he needs to be in a school with very small classes where they are tailored to his needs. My fear is how he will cope in secondary school as they're so much bigger and I feel he'll just not manage at all.

  • Hi again,

    I also made a.post titled 

    POWER TO PARENTS,...you should think about tape recording all meetings

    Stay strong,

  • Hi everyone,...I'm a single mum with two kids oldest now is 15 and asd,....I have mentioned in another post the only thing that help ALL my family , not just my son but all of us benefited from backpacking,

    It sounds extreme , but then so was our circumstances and family life had become unbearable,

    I had NEVER BACKPACKED BEFORE 2010!..it Tomas cook book pack and off,that used to be us then......

    I found backpacking gave us all something different back,...let me explain how,

    For my son with asd, it provided AN environment we controlled,..for instance if he had a meltdown I would break down everything he said or did that was wrong , then told him about other ways he can deal with stress and anger, he then would feel anxious that other people had noticed his oddness,...but he was reassured and we went to another area with different people , and so the whole process started again ....UNTIL HE MANGED TO COPE ,you see at school if he f##ks up,... this will only make him more aware because he KEEPS SEEING THE SAME PEOPLE......AND PEOPLE DONT FORGET , they are in affect a constant reminder, your kid is asd not stupid, so this will affect him knowing what others think about him,

    Then there's the life skill YOU ALL LEARN , you think a 10 hrs bus trip will be 10hrs....what happens when it breaks down? And your still on it 20hrs later!!!yeah it's not fun but you all end up talking and most important you listen to each other like never before,...you will experience everything together, it will bring your family closer ,because your doing it for your kids ,

    And you can make it an educational experience also ,.....

    You don't have to backpack for a year you can go as long as your budget allows a few weeks ....maybe more,...don't get sacred of the education authority, it's an educational and hands on treatment for your kid, I've taken my two kids max 3 months per yr..during term time,...

    Also the planning that goes into these trips is huge , so your attention is diverted to a positive approach to helping your family instead of feeling helpless and unable to reach your kids needs and development,...your taking a proactive approach,...these trip DONT HAVE TO BE EXPENSIVE, the cheapest for my family was £2500 for flights EVERYTHING FOR 3 months!,....and it could've been cheaper,.....

    THE amount of research ..i.e....looking and reading about the place you might visit going onto travel forums , do you like jungle , mountains, cheap place like Morocco,...Cambodia,...Bolivia,....3 day Amazon trek for £45 each ...it costs more to go to the cinema!!!!

    You should maybe look into something this extreme .....it HAS HELPED MY FAMILY ENORMOUSLY,....And I would never go back to a packaged holiday again,

    P.s my kids were 6/9 when we first started doing this and the impact has been in my eyes the closest thing to a cure , don't get me wrong he still has meltdowns but this is understandable given the lack of care from those in authority he faces on a daily basis,

    Plus we also have two Chihuahuas as therapy dog's! Which has also been great for helping with responsibility and accountability when he fails to pick up the poo!

    All the very best 

  • Speak to IPSEA. ASD is SEN in law so an EHC Assessment should be carried out. It's got nothing to do with academic progress - that comes into whether a plan is needed. Your son''s SEN is Social & Emotional - read the SEN COP and see the 4 areas of need. Match your son's needs to the 4 areas. Get out all of the reports you have from school or other professionals and look for indications of stress: lack of cooperatio, hitting people, running away, damage to property etc. Keep notes and a diary of all problems at home - consider filming. List out all of the stress related behaviour and then highlight that SSD puts your son at high risk of serious mental health problems so support is required before things deteriorate any further. Type up your notes and copy all reports then attach to the sample letter filled out with a summary of your evidence. Submit to the LA

    I don't know how successful this will be but it's the line I intend to take. If all of us are deterred by being told "too able for help" then no one applies, so the LAs can say no service is required- so nothing is provided. We should all apply so we can't be ignored. I don't think its ok that we are all left to deal with the aftermath of lack of support:(

    IPSEA told me I should expect to appeal at every stage and to keep in touch with their helpline. Good luck and I hope you get the help your son needs 

  • Hi LadyJane,

    I think the Ed Psych is completely wrong saying there is no need for inclusion support people.  There is definately a need as you're experiencing at home.  You also need the EHCP in place as soon as possible.  All of us with autism need that extra bit of help with the socialising within the lessons.  Academically you child might be doing OK,but he does need help.  Maybe not in the way other children do, but for his own self.

    Hope you get what you need.

    Margaret