General Disccussion about your connection to autism! - Page 2 — Scope | Disability forum
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General Disccussion about your connection to autism!

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  • hartill77
    hartill77 Community member Posts: 97 Courageous
    I agree @Firefly123 children are getting less and less support to help.
    If they know a child is under assessment they should try to help them. I know a parent who home schooled her second child because of her first child's experience at school. Its a shame. 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    Yes it is I'm trying to get them to apply for a statement or I will myself she's missed more than half her lessons the past few years even though she's always at school so they can't say she is managing as there is more than enough evidence to prove she is clearly not and would help her at least get the right support at college or that will never work for her. 
    They are failing so many kids 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    Is there another school that she could go to? where they could support her? My daughter lacked support all through primary and we moved areas.  She goes to a better school now where they picked up on her classroom anxiety in the first week of her been there. 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    I wish there was I had a meeting there on Friday and it went from bad to worse she got excluded for 5 days as she punched a wall and they are saying they can't handle her I'm like should you not be asking why she's punching walls as it never happens at home ever. They are talking about kicking her out all together or making her do night classes that I know she definitely will not do as you don't go to school at night. So I have to wait for a letter to see what they have decided. I'm so angry as I've been asking them for years to get help but they didn't even apply for a statement of special needs and now they are saying this it's beyond belief 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    Do you have someone to help and support you? Have you contacted autism westmidlands. I've had great help from them. The problem with schools is that it's their policy but law trumps policy every time. You are right night school won't help as that's disrupting normal routine. I hope she gets a good college and a statement after all this. 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    Yes we had a woman from out reach also at the meeting she was not happy at the way they did it either and said so them just trying to get to may to get rid of her is not how it should go but yes of course they said they didn't mean it like that the meeting was meant to be 30 mins took 2 hours and tbh I didn't take half of it as was very exhusting and one sided as was 5 teachers I did hear self harm by punching the wall I guess so until I get the letter might get a better idea of what's going to happen 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    Has your daughter ever been viewed? assessed by the cat worker at school. I requested this after her diagnosis don't know if that would help. Let me know how you get on and if there's anything I think of to help you I will let you know.
    My Daughter saw an occupational therapist that was a big help for her an explained why she use to hit out.  I dont know if thats something that would help or if you have seen one.  The waiting list for them is long though. 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    I'm. Not sure I know she saw an educational psychologist as she kept getting into trouble as won't take of her hoody and it's against school policy. So she heard about a typical day of them trying to get her to remove it 50 detentions later and they are not getting anywhere she asked what happens if you ignore the hoody and they said then yes she did actually get her work done so she said they have an obligation unter the disability act to make reasonable adjustments to their policy and she should be allowed to wear it but still at the meeting on Friday they were moaning about it again. I feel they were looking for an excuse to exclude her as she's never been before for punching the wall.
    Thank you i
    t's just a never ending battle 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    I know what you mean it's a constant battle. Stay strong you can do this!! 
  • TLC11
    TLC11 Community member Posts: 15 Listener
    psych101 said:
    I have ADHD, Asppergers Syndrome, Bi-polar disorder and emotional instability disorder, and even though i'm a qualified psychologist it is difficult at times. I graduated so that i can help others who suffer with the day to day turmoils of Autism and have worked for Autism West Midlands, i specialise in Autism and have researched it since i was diagnosed 15 years ago (aged 33). If there is Anyone who would like advice or just to talk in general about Autism i am more than happy to help. Best Wishes, Paul.
    Paul this as amazed me well done for being a fighter, i have just posted about. my son i would be so grateful for some advice if and when your are free if you would be able to  contact me no rush would mean alot.
    Many thanks tanya 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    Hi Tanya
    Feel free to post and ask advice in here too! 
    :smile:
  • TLC11
    TLC11 Community member Posts: 15 Listener
    Thank you its a rather long rant but any advice would really help as everything just seems to over welming at the moment i will see if i can copy and paste x 
  • TLC11
    TLC11 Community member Posts: 15 Listener
    First of all thank you for  letting me post here not sure my son has autism but i just have a feeling its possible i am sure your be able to advice as would know better .

    Hi everyone 
    I dont even know where to start right now this maybe a long post sorry ... 
    First of all you all seem so lovely and supportive keep it up its so rare to find someone who understands. 

    My son is 8 will be 9 December 1st not very long at all. 
    There has always been something with him that has not overly been right as a baby the midwide questioned autsim, he would not pick anything up and just put it in his month would sit and look at it (food test) had to have set cup and plate if anyone ate from it he would throw the plate and was the same if anyone drunk from his cup. My daughter was going though being diagnosis for narcolepsy so it wasn't something at the time i took into account, i feel so bad now seeing how he struggles. Maybe i should of pushed things sooner.
    When he started nursery his speech was questioned he was very quite didn't really  talk alot and was always told "he has 2 older sisters who talk for him, not to worry just keep reminding them he needs to talk for hiself" we could always understand him but school or anyone else struggled.
    Nursery then refered him to speech and language therapy, it come back the school had not filled there bit in right to take it back to school re do their part and send it back his now in year 4 that to this day has never been done and with every letter that come though for him states his had or been referred to therapy. 
    In year R teacher never had any issues same as year 1 although they would say he wants to be a baby he don't want to do the work he daydreams alot they had no real worries about him, so i left it i didn't really take much into account what i see thinking maybe he just likes screens. (Cat in the hat he wouldnt sleep with out watching it) would be like i have taken away a lifeline. His always had a thing for teddy bears thats stayed even now. He never use to really play and it was only watching him today that i look back and think his always just lined things out had tv on unless it was wheels related he loves anything that runs on batteries and is the first thing he asks now does it have batteries.
    Year 2 i was told the same thing the only difference was this teacher had a teacher my daughter had and i found i could ask her the words "i think his autism" left my mouth before i could think. Her son is autistic so i don't know if that made me open up for the first time.
    Year 3 was just as hard he would take himself out of class, lash out over things like a rubber being taken his teacher wanted to take his number square away. She even said how he can't keep up if a acreen is on or classroom is to loud, busy or colourful. That was when his year 2 teacher become senco and his ehpc went though so fast.
    Here we are year 4 

    I finally get a appointment to see a behaviour doctor who i thought maybe of help as i had seen him for my daughter not understanding narcolepsy he never done much for her but had a interest in sleep. Here we was in field so to speak.
    He took one look at the ehcp got my son to draw a picture asked him questions but still reading so how much he took in who really knows. Looked at me and said he has audio processing delay... having hearing trouble myself i understood what he was saying. Yet when i said to him but this dont explain as to why his anxious in busy places unless its a sensory over load he walks around hood up and hands on ears sometimes depends on level of loud.
    He will not try anything new if he does we need to show him ie rides it dont leave the ground, has no upside down bits and it don't go fast. 
    Even taking him to just ride (bike riding) was a list of questions. It took alot of reassurance in the end he come along he sat on the bus looking very white and sheepish huged into me (he loves bikes) was the unknown of the track. Once we got outside and he could see it was ok until we got up to the bikes then he was overwhelmed because the bikes was not his own bike. Even with staff and us getting on bikes he wouldn't. 
    Other things like when i ask him to get dressed unless i put the clothes in his hand he will carry on what his doing, when its bathtime he will not go and run a bath we have to do it for him if he wants a bath he will ask us to run it if we try and exchange him to run it himself well sure from reading this you get the idea. Is this a process disorder. Well i  was i spoken down to its not a disorder its a delay your putting a label on him... he was not interested in my worries i had not got to food he was like so M why don't you get dressed when mum asks "because i don't want to" why don't you run yourself a bath "because i don't understand the taps" i was told to just keep showing him. 

    A few days after clinic in school he went over on his ankle on the Thursday no one told me he come out of after school club with a limp and some bruising didn't really think anything bad had happened or school would have told me surely. Took him in the next day he come out sweating looking white and withdrawn his teacher said it was because i said about him hurting his ankle and that she had told him not to run. When he got home it was clear it was not just a case of a small bump it was sollowen up a visit to a&e had confirmed he tore his ligament in his ankle. The sweats was clearly pain sweats he never told anyone he was hurt or in pain so for over 24 hours he braved it. 

    I then called the drs pa to ask for advice on the fact he can hurt himself and yet still not communicate it. If i can have a appointment and was put on for the next one that is cancelled.
    Low and behold i get off the phone to find a letter from the doctor goes on how he supported my daughter... why that was needed is beyond me. He has learning  difficulties and his age is that of his difficulties his made no appointments (yet we have another one for a years time) his going to contact the school and see if they have any other worries... 
    Most unhelpful letter as yes i am aware of him having leaning difficulties we can see that with his reading writing fact he dont do homework because its above his level we end up showing him doing it for him, his teacher is against giving him work he will be able to do himself because he needs to catch up as year 6 exams are coming up. He never sat his year 2 ones because he was not allowed to have someone read and write for him. I expect he has issues there its the other things that worry more about. 

    I honestly don't know where to turn at the moment i am 1/2 way though a letter where i am adding photos of things to see if his doctor cant see us, maybe he will refere us on to some one who will listen. Or am i just taken up a space for a child who does need it. 
    Sorry this has has been long advice much needed feel like i am going mad at moment.
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    Hi Tanya

    First all remember you are your sons expert. You know him better than anyone else! 
    Go with your gut feeling. 

    My daughter didn't get a diagnosis until she was 9 and I had problems at school from year 2. 

    Have you tried contacting autism westmidlands there really good. 

    I keep a folder now of evidence from school and doctors letters.  If you speak to a teacher at school, I send an email after just so its logged and can be used again because teachers and senco often say things and don't stick to them. This also gives you a paper trail of dates makes it easier to chase things up. 

    Keep a daily diary so when you do have an appointment you are prepared and can show. 

    Ask Senco at school if you have the CAT worker to come out to view him at school. 

    I don't want to overload you with too much. So if there's anything you need ask! 

    There's a delay in appointments because of lack funding and budget cuts so you have to keep on at them. 
    Your not alone and there's lots of people on here in similar situations too. 

    Hope this helps x
  • TLC11
    TLC11 Community member Posts: 15 Listener
    Thank you so much, its really helpful  i have started making notes filming what i can etc. 
    I have not called anyone on autism  as i am in limbo on if this  is what he has or is it to do with learning. I feel  completely overwelmed by it all. 
    Please may i ask what a cat worker is.

    Thank for taking the time to read. I will go look at autism midlands now  .

    X
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    CAT is communication austim team. All schools can request they come out. 
    My daughters primary school refused so the doctor contacted them directly. Which is how my daughter got her diagnosis. 
    You don't need to have a diagnosis but if you contact them they can give their opinion on if they think he is and point you in the right direction. 

    There are also groups depending on where you live that you can attend. 

  • TLC11
    TLC11 Community member Posts: 15 Listener
    Thank you  that is so helpful cant believe your daughters school  refused. How is she doing now hope things are alittle. easier for you x 
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    I was lucky because of her sensory processing difficulties it got us an appointment with the occupational therapist. 
    Once we had that appointment she got her diagnosis. But I've asked since for an appointment and was told there's a 12 month waiting list :(
    Were fine at home its mostly social problems at school that's the issue and she's now at a better school too! 
    I've done some courses too which helped me. 
  • TLC11
    TLC11 Community member Posts: 15 Listener
    I feel the same at home his as good as gold bit hard for him not to be, he likes his own space headphones in and away he goes. Its school and when we are out. I looked on the site thank you going to give them a call tomorrow. Advice is much needed as its often so stressful when his out and about. 
    Pleased your  daughter is at a better school its so important for them to be comfortable and understood, i bet the courses really helped you also. 
    My daughter had a o t you can't  fault them some have so much knowledge. I cant help but think the funding cut as a massive  park even our physiotherapy lady today understood and got M out a feelings  board.
    As for the 12 month wait  gosh tell me about it our last appointment he said 12 months until next one unless the school have worries.
    Time will tell i was at the clinic today so handed in some photos and a 5page report so lets see where this gets him. I hate seeing him so distressed more then anything we are out he would more then happy to hide x
  • hartill77
    hartill77 Community member Posts: 97 Courageous
    It doesn't get easier but having access to resources is a massive help to us. 
    Theme parks was a problem for us but we now get a ride access pass and staff are always really nice. We've had some really good days out in places for autism events as well. Autism westmidlands do kids clubs. 

    What area do you live?

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