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Autism and Me

  • 14-03-2017 9:11am
    #1
    Closed Accounts Posts: 281 ✭✭


    Surprised not to see a thread about the documentary last night. I enjoyed it. I felt it showed people on the spectrum as human beings rather than objects. It must have been tough for the people involved (parents & children) but they came across well. I hope the show starts some form of dialog in the country at how poor services are for people with autism.

    I was a bit disappointed with Claire Byrne Live afterwards, didn't really dig into the issues at all.


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Comments

  • Banned (with Prison Access) Posts: 3,315 ✭✭✭mynamejeff


    good show alright


  • Registered Users, Registered Users 2 Posts: 2,184 ✭✭✭mrsdewinter


    I thought it was excellent. They were all remarkable. The kid who said people talk about autism as if it's something that swoops on children was right. Loads of people regard autism as the very worst thing that can happen to a child. Hopefully, that programme will have given hope to parents who've been given a diagnosis. It was remarkable to hear Fiacre's writing. I actually woke up this morning still thinking about the fact that just a few years ago, he had no way of expressing himself. And now he's writing poetry.


  • Registered Users, Registered Users 2 Posts: 43,028 ✭✭✭✭SEPT 23 1989


    you could understand Fiacra's violence unable to express himself freely

    he needs to get those poems published


  • Registered Users, Registered Users 2 Posts: 156 ✭✭Shop40


    I thought it was a very informative documentary and I felt emotional watching. I have a young child who although is not officially on the spectrum, has many challenges. It left me with renewed hope for him, that he can find his own path in life despite not classed as "normal".
    I too am still thinking of Fiacre, an amazing young man. So frustrating that he can't sit the junior cert or even part of it. I mean if it takes 2 weeks to dictate the answers using letter pointing, just let him do it!! Give him the motivation. The red tape is so cruel.
    They were all so inspiring.


  • Registered Users, Registered Users 2 Posts: 526 ✭✭✭downwesht


    Fiacre was a special lad.What a shame that there is no technology to help him communicate better.He has a wonderful mind and intellect,a wordsmith trapped in a world alien to us.Lets hope that he succeeds in whatever he desires.As a father of a child with ASD I thought the programme was very good and gave those with the condition a voice.


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  • Registered Users, Registered Users 2 Posts: 7,971 ✭✭✭_Whimsical_


    Shop40 wrote: »
    I thought it was a very informative documentary and I felt emotional watching. I have a young child who although is not officially on the spectrum, has many challenges. It left me with renewed hope for him, that he can find his own path in life despite not classed as "normal".
    I too am still thinking of Fiacre, an amazing young man. So frustrating that he can't sit the junior cert or even part of it. I mean if it takes 2 weeks to dictate the answers using letter pointing, just let him do it!! Give him the motivation. The red tape is so cruel.
    They were all so inspiring.

    I thought it really illustrated how the dept of Ed here really does not cater to the needs of diverse abilities. It should be easy to allow exceptions for children like Fiacra so their work over the year could be used to achieve a grade state exams, like a continuous assessment. He really, really deserves to have his work and ability recognised the same as everyone else who goes to school. He was so exceptional. It's amazing there isn't more technology to help him communicate too.

    The show was fantastic! I couldn't recommend it highly enough. All the people who shared their experience were so generous and so just plain bloody amazing. All people you'd like to have around. I'm still thinking about the family with the twins, really hope their little boy who needs extra help gets it and life gets easier for them.


  • Registered Users, Registered Users 2 Posts: 17,495 ✭✭✭✭eviltwin


    Really enjoyed it. It was great to see a program that was a positive representation of autism. I thought Hughie, the little lad at the beginning was an absolute legend. I watched it with my son who has Aspergers and he loved seeing other kids like him. I hope it cleared up some of the misconceptions about the condition and helps the public understand the condition a bit more.


  • Registered Users, Registered Users 2 Posts: 68,317 ✭✭✭✭seamus


    I know there was some criticism online that the show only really displayed high-functioning autistic people, with Fiacre probably being the most extreme case.

    But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

    Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world in the same way the rest of us do, should go some way to illustrating that they're not freaks to be marginalised, but equal human beings who require understanding, assistance and compassion.


  • Registered Users, Registered Users 2 Posts: 5,476 ✭✭✭neonsofa


    seamus wrote: »
    I know there was some criticism online that the show only really displayed high-functioning autistic people, with Fiacre probably being the most extreme case.

    But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

    Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world in the same way the rest of us do, should go some way to illustrating that they're not freaks to be marginalised, but equal human beings who require understanding, assistance and compassion.

    I do agree with you. But then again when you mention autism, people tend to think of rain man, or a child obsessed with trains, or Sheldon Cooper- that sort of thing. Not the likes of Fiacre or non verbal people, who are just as intelligent or talented but have no way to communicate it to the world. Not that this takes away from the show, I think it was a great show though for your reasons above.


  • Registered Users, Registered Users 2 Posts: 825 ✭✭✭jameorahiely


    downwesht wrote: »
    Fiacre was a special lad.What a shame that there is no technology to help him communicate better.He has a wonderful mind and intellect,a wordsmith trapped in a world alien to us.Lets hope that he succeeds in whatever he desires.As a father of a child with ASD I thought the programme was very good and gave those with the condition a voice.

    All the children were great. I really felt like sendinh Fiacre down an I pad or startimg a go fund to provide an ipad.

    It was a fantastic show, very insightful


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  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    Good program but I feel it failed as it did little to show the real problem in the space which is resourcing.

    Current waiting lists in Laois for early intervention is 2 years imagine knowing there is something wrong with your child and not being able to do anything.

    Quite rich your man Harris talking about equality and rights when he didn't comment on how is own brother hasn't exactly resourced the area.


  • Registered Users, Registered Users 2 Posts: 31,218 ✭✭✭✭freshpopcorn


    I really enjoyed this last night and I really liked Simon Harris's brother Adam!


  • Registered Users, Registered Users 2 Posts: 26,292 ✭✭✭✭Mrs OBumble


    seamus wrote: »
    .

    But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

    Showing that these are in fact highly intelligent people, but who have difficulty interacting with the world ....


    Some are, but some aren't, too.

    It would have been good to have people from across the spectrum.


  • Registered Users, Registered Users 2 Posts: 10,633 ✭✭✭✭Widdershins


    seamus wrote: »
    But I think it was important for it to not be a showcase of people with extreme difficulties. There is already a wider perception that autistic people are broken, are outsiders and obviously the "weirdos" of society with a mental disability that can't be fixed.

    In other words, the ones who are never represented and don't have a voice (literally or figuratively)? Not sure I like that description much either


  • Registered Users, Registered Users 2 Posts: 348 ✭✭holy guacamole


    Although the plight of those living without the correct treatment shouldn't be played down I couldn't help but wonder how people with autism were treated in this country twenty or thirty years ago.

    This really sprung to mind during the clips of Adam Harris as a child; in previous generations, in a society uneducated about autism, he would have just been seen as a disruptive kid and probably punished as a result.

    Must have been hellish for those with the condition and their families back in the day.

    We can only hope that programmes like this further educate people about autism and that, in time, those diagnosed with it can benefit from this shared knowledge.


  • Registered Users, Registered Users 2 Posts: 656 ✭✭✭clairek6


    If anyone has an interest in autism there is an American girl I follow on Facebook Carly fleishman she was once non verbal autism and now speaks about what autism is and how autistic people perceive the world, think she has a few books too.


  • Registered Users, Registered Users 2 Posts: 6,229 ✭✭✭marklazarcovic


    was hoping someone would have helped Fiacre with a tablet or ipad to speed up his responses using predictive text,was clearly frustrating him,or did i miss them saying he could not use one for some reason?


    fascinating insight,im sure we all know someone who has autism/aspergers


  • Registered Users, Registered Users 2 Posts: 7,971 ✭✭✭_Whimsical_


    Although the plight of those living without the correct treatment shouldn't be played down I couldn't help but wonder how people with autism were treated in this country twenty or thirty years ago.

    This really sprung to mind during the clips of Adam Harris as a child; in previous generations, in a society uneducated about autism, he would have just been seen as a disruptive kid and probably punished as a result.

    Must have been hellish for those with the condition and their families back in the day.

    We can only hope that programmes like this further educate people about autism and that, in time, those diagnosed with it can benefit from this shared knowledge.

    It's still not that dissimilar for families now who are relying on the state for help. After the show last night Claire Byrne Live dedicated a segment to the show and featured some of the families.

    They went to pains to get across that the young people featured last night are all the result of having gotten early intervention and years of targeted help that they had to fight hard for.
    The parents of Lee, the twin who had more severe issues, told how the school initially refused him a place in the special learning unit and wanted him in main stream ed even though it was obvious watching him last night that would have been impossible.

    Another woman mentioned she has two kids with autism, one 5 and one 9, and they get no help at all. She said it's waiting lists just to be put on waiting lists and that's the experience of so many. She said she realised her 9 year olds life and future life chances would be dramatically different by now if he'd got help earlier.


  • Registered Users, Registered Users 2 Posts: 10,633 ✭✭✭✭Widdershins


    clairek6 wrote: »
    If anyone has an interest in autism there is an American girl I follow on Facebook Carly fleishman she was once non verbal autism and now speaks about what autism is and how autistic people perceive the world, think she has a few books too.

    Very encouraging story. To think, the difference technology has made for her and many people with Autism.


  • Registered Users, Registered Users 2 Posts: 422 ✭✭The Assistinator


    As with all these programmes my only hope is that it educates people to not be so judgmental next time they see a child having a meltdown, or getting frustrated, because they can not communicate what it is they want, when out and about.


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  • Registered Users, Registered Users 2 Posts: 43,028 ✭✭✭✭SEPT 23 1989


    For future parents who are reading this thread today or years from now who get this news and are full of worry

    Do one very important thing for your child

    Dont wait for the state for help

    Beg borrow and steal and do things privately

    It will pay off


  • Registered Users, Registered Users 2 Posts: 1,787 ✭✭✭mohawk


    As with all these programmes my only hope is that it educates people to not be so judgmental next time they see a child having a meltdown, or getting frustrated, because they can not communicate what it is they want, when out and about.

    A few years a work colleague came back from lunch giving out about a child having a tantrum outside a shop because he dropped his Lego and she was furious because the woman looking after the child didn't give out to him as the child was too old to be having a tantrum. My son's play school was around the corner and his minder would of being collecting him around the time she was on her lunch. That child she was giving out about was more then likely my son having a meltdown.

    That "bold" kid with the bad parents is sometimes an overwhelmed kid who no longer can cope and needs a release.


  • Closed Accounts Posts: 39,022 ✭✭✭✭Permabear


    This post has been deleted.


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    Hi folks. My son is autistic, non verbal and prone to extreme violent meltdowns. It's a horrendous disability at the best of times.
    He's 8 years old now and me and his mother daily have told him down together in order to stop him hurting us and himself.
    Trying to get a carers allowance first my wife, his full time carer was a battle. She can't work Nd is providing the state with a service but they didn't want to know.
    The state just don't want to know. I regularly see people in the playground avoid us and him as if they are afraid of him because of his sensory overloads. We recently got approved for respite after 12 months waiting!!

    I'm sick of this country.

    I really feel the programme last night whilst informative and interesting didn't really get into the nitty gritty issues facing families and children with autism. I can only pray for the day my lad can get on a bus on his own or even sit on a main stream class.

    He sleeps about 4 hours a night and had to be medicated to do so. He soils the house and gas to be watched intensively as has no sense of danger.

    I love my son but would take away his autism in a heartbeat. Things are difficult and are only made harder by having to fight until your worn out for everything he is entitled to.


  • Registered Users, Registered Users 2 Posts: 9,810 ✭✭✭take everything


    Neurotribes by Steve Silberman (used to write for Wired I think) is a good account of the history of autism/ASD and the future of the condition. Might be interesting reading for parents here. It's actually an uplifting account which views the features of people on the spectrum as potential strengths.

    It goes into the early work by Kanner/Asperger, looks at high profile people with the condition like the professor Temple Grandin (who was written off as a child), shows how high-functioning autism/Aspergers is really only recently properly recognised and discusses neurodiversity and the idea of seeing Aspergers more like a personality type that society should adapt to and support (rather than the other way around).

    Silberman himself is gay and he draws reasonable parallels between the discrimination people with ASD experience and what gay people have gone through.

    Good read.
    https://www.amazon.com/Neurotribes-Legacy-Autism-Future-Neurodiversity/dp/0399185615


  • Registered Users, Registered Users 2 Posts: 10,633 ✭✭✭✭Widdershins


    Hi folks. My son is autistic, non verbal and prone to extreme violent meltdowns. It's a horrendous disability at the best of times.
    He's 8 years old now and me and his mother daily have told him down together in order to stop him hurting us and himself.
    Trying to get a carers allowance first my wife, his full time carer was a battle. She can't work Nd is providing the state with a service but they didn't want to know.
    The state just don't want to know. I regularly see people in the playground avoid us and him as if they are afraid of him because of his sensory overloads. We recently got approved for respite after 12 months waiting!!

    I'm sick of this country.

    I really feel the programme last night whilst informative and interesting didn't really get into the nitty gritty issues facing families and children with autism. I can only pray for the day my lad can get on a bus on his own or even sit on a main stream class.

    He sleeps about 4 hours a night and had to be medicated to do so. He soils the house and gas to be watched intensively as has no sense of danger.

    I love my son but would take away his autism in a heartbeat. Things are difficult and are only made harder by having to fight until your worn out for everything he is entitled to.

    Yes, that's why I'm not that impressed when tv shows mainly show high functioning people with autism. Not to say their problems are trivial, far from it, but I reckon it's people like you who would most benefit from more awareness and it's people like your son who need the understanding the most (and the help, which hopefully you will get very soon)


  • Registered Users, Registered Users 2 Posts: 11,989 ✭✭✭✭Giblet


    My wife is an educational Psychologist who works with children with Autism / Aspergers and Cerebral Palsy. It's impossible to get a job in this country in somewhere like NEPS due to the fact that they simply are not recruiting anyone, as well the difficulty hiring someone from the EU (translations of documents, references from people who don't speak English or have even died). She has been fully vetted and recognized by the DOH, but they just don't have the resources to allow her into NEPS. They pretty much want her to go back under supervision in Ireland for 2 years on our dime! Where though? you have to wonder.

    The psychologist:school ratio is truly shocking in this country and it's made harder by the fact that the Government are sitting idle.


    http://www.impact.ie/educational-psychologists-call-on-government-to-implement-commitments-on-recruitment/


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    Giblet wrote: »
    My wife is an educational Psychologist who works with children with Autism / Aspergers and Cerebral Palsy. It's impossible to get a job in this country in somewhere like NEPS due to the fact that they simply are not recruiting anyone, as well the difficulty hiring someone from the EU (translations of documents, references from people who don't speak English or have even died). She has been fully vetted and recognized by the DOH, but they just don't have the resources to allow her into NEPS. They pretty much want her to go back under supervision in Ireland for 2 years on our dime! Where though? you have to wonder.

    The psychologist:school ratio is truly shocking in this country and it's made harder by the fact that the Government are sitting idle.


    http://www.impact.ie/educational-psychologists-call-on-government-to-implement-commitments-on-recruitment/

    What the Government do Giblet shouldn't shock us.

    This is the same crowd who cut the respite care grant for christ sake. If we rely on them to do anything we'll be waiting.

    As your wife probably knows the earlier Autism is identified and diagnosed and the better treatments available when the children are younger (3-8 age bracket ) the benefits are huge. You could go from having a child being totally dependent to being able to live an independent life.


  • Registered Users, Registered Users 2 Posts: 11,989 ✭✭✭✭Giblet


    What the Government do Giblet shouldn't shock us.

    This is the same crowd who cut the respite care grant for christ sake. If we rely on them to do anything we'll be waiting.

    As your wife probably knows the earlier Autism is identified and diagnosed and the better treatments available when the children are younger (3-8 age bracket ) the benefits are huge. You could go from having a child being totally dependent to being able to live an independent life.

    The biggest problem in this country, is not just diagnosis, but as was seen in the documentary, that teachers do not have the tools to handle a child with Autism in their classes. Either they are ignored, or treated like a disruptive child. There needs to be a psychologist available to assess the child and come up with a plan for that child. It's truly shocking.


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  • Registered Users, Registered Users 2 Posts: 43,028 ✭✭✭✭SEPT 23 1989


    the short sightedness of governments is idiotic

    spend the money on the child early on and then they have a chance of an independent life,not being a burden on the state in later years saving multiples of what it would have cost to intervene when they were young


  • Registered Users, Registered Users 2 Posts: 508 ✭✭✭purpleisafruit


    I have a 4 year old son with ASD. Over the last year, we've spent thousands on SLT and OT. Since being diagnosed 18 months ago, HSE has not provided a single appointment to us for these services. Early Intervention services are hilariously badly named! The only way to progress in any way is to make a complaint and it is actively encouraged by the staff when you call them.
    My wife gave up work to be at home with him and we receive Carer's Benefit.It's a big help but is mainly spent on private appointments for play therapy, social skills, SLT and OT.
    Just for awareness, make sure that you claim Incapacitated Child tax credit. It's worth €3300 a year to you. Ignore the horrible title of it!


  • Registered Users, Registered Users 2 Posts: 4,331 ✭✭✭Keyzer


    you could understand Fiacra's violence unable to express himself freely

    he needs to get those poems published

    The reincarnation of WB Yeates, his poetry was incredible...


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    Giblet wrote: »
    The biggest problem in this country, is not just diagnosis, but as was seen in the documentary, that teachers do not have the tools to handle a child with Autism in their classes. Either they are ignored, or treated like a disruptive child. There needs to be a psychologist available to assess the child and come up with a plan for that child. It's truly shocking.

    Actually diagnosis is also a big problem in this country, most of the early intervention services which should precede the mainstream function are not in place.

    How can you plan for what you need in the classroom when you dont do your job before the children even get to the school.

    I would also go as far as saying, the approach of mainstream schools need to change, my wife teaches in a unit and only recently did the department recognize the value of dip training done in these units. Up until then they could only get recognized as a teacher in special units and not across the board. Net-net you would have people actively not taking up teaching positions in this area as it wasnt valued as much.


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    I have a 4 year old son with ASD. Over the last year, we've spent thousands on SLT and OT. Since being diagnosed 18 months ago, HSE has not provided a single appointment to us for these services. Early Intervention services are hilariously badly named! The only way to progress in any way is to make a complaint and it is actively encouraged by the staff when you call them.
    My wife gave up work to be at home with him and we receive Carer's Benefit.It's a big help but is mainly spent on private appointments for play therapy, social skills, SLT and OT.
    Just for awareness, make sure that you claim Incapacitated Child tax credit. It's worth €3300 a year to you. Ignore the horrible title of it!

    We are in laois waiting on a diagnosis but it looks like its ASD. We met with the early intervention team here and they advised psychological serviced wouild be 2 years to wait. By the time my daughter would get the referal she would be then moved on to the school going team.

    Thank you for the tip on the tax.


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    My son was in mainstream school in an ASD unit. The staff were great and done what they could with the terrible facilities and supports they were given.

    I would advise anyone out there with a child that has moderate to severe Autism to get them into a specialised school if they can.

    My son is in there now and the therapies, understanding, facilities and activities are light years ahead.

    Myself and my wife are at the stage now where we accept that our son has limitations and will need life long help and assistance. Once you accept that things become a lot easier.You are no longer fighting yourself.

    Our main issue in the past 12 months has been trying to access respite centres so we can spend some quality time with our 10 year old daughter that she deserves. It was horrendous trying to get it. That's the kind of thing that cutbacks have affected and it's shameful really. We weren't asking for a lot. maybe a weekend every 3 months but still were told that the service weren't available or accessible.

    Anyone here who enjoyed the documentary should watch Louis Theroux.

    He done one called extreme love:Autism.

    It was in the states. He jumped for High functioning to profound. It's excellent for anyone who wants to understand what the families and children go through.

    It's on netflix i think.


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  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    Calhoun wrote: »
    We are in laois waiting on a diagnosis but it looks like its ASD. We met with the early intervention team here and they advised psychological serviced wouild be 2 years to wait. By the time my daughter would get the referal she would be then moved on to the school going team.

    Thank you for the tip on the tax.

    Have you looked at the Domciliary Care Grant also?


  • Registered Users, Registered Users 2 Posts: 17,495 ✭✭✭✭eviltwin


    Yes, that's why I'm not that impressed when tv shows mainly show high functioning people with autism. Not to say their problems are trivial, far from it, but I reckon it's people like you who would most benefit from more awareness and it's people like your son who need the understanding the most (and the help, which hopefully you will get very soon)

    The impression I got was that it was meant to be about people with autism talking about the condition and how it affects them in their own words so it would make sense to focus on people who could communicate.

    I think its important to show people who seem "normal", in my experience with a child who is verbal and independent but who has sensory issues its hard to get across to people that he is actually autistic. People expect Dustin Hoffman's character in Rainman and its not always like that. It makes it harder for people to take his issues seriously because he is written off as a brat or fussy.


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    Have you looked at the Domciliary Care Grant also?

    Honestly havent even thought that far ahead, we have been laser focused on just figuring out where my daughter is.

    Luckily my wife teaches in the area and has about 8 years experience as an SNA so we use pictures to communicate with her. She can tell us what she wants based upon little picture options we setup for her.

    We both work however so not sure thats an option.


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    Calhoun wrote: »
    Honestly havent even thought that far ahead, we have been laser focused on just figuring out where my daughter is.

    Luckily my wife teaches in the area and has about 8 years experience as an SNA so we use pictures to communicate with her. She can tell us what she wants based upon little picture options we setup for her.

    We both work however so not sure thats an option.

    It's not a means tested payment.

    You'll need every penny of it going forward.

    We use the PECS also.

    Let me know if you need any info or help on the DCA. It's a battle to get it.


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    Yup tell me about it, i will indeed be in touch. I really need to look into this stuff as we are really only coming to grips with getting her diagnosed at the moment nad havent looked beyond that.


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  • Registered Users, Registered Users 2 Posts: 4,494 ✭✭✭harr


    While I did enjoy the program and it was great to see RTE discuss autism and to show it's not the end of the world for some...I would have liked them to show the other side of autism maybe children who are not so high functioning.
    My lad is ten non verbal and is low functioning I think it would have been better to show that side as well..the side where a child might not sleep for 3-4 nights or the side where a child might not be toilet trained...
    Or the fact us parents have to cry and shout on the phone every day to try and get an hour speech and language a month...or that I cry myself to sleep at night because I can't afford the €100 euro private therapy or the fact I have to nearly beg for a medical card...or the humiliation of failing out a two page document on why my child needs nappies I can't buy in the shop..
    Sorry for rant ..


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    Calhoun wrote: »
    Yup tell me about it, i will indeed be in touch. I really need to look into this stuff as we are really only coming to grips with getting her diagnosed at the moment nad havent looked beyond that.


    Yeh it's all a bit of haze early on. But look it, your not on your own it. A lot of us around here have been there. Some really good advice available.


  • Closed Accounts Posts: 6,820 ✭✭✭smelly sock


    harr wrote: »
    While I did enjoy the program and it was great to see RTE discuss autism and to show it's not the end of the world for some...I would have liked them to show the other side of autism maybe children who are not so high functioning.
    My lad is ten non verbal and is low functioning I think it would have been better to show that side as well..the side where a child might not sleep for 3-4 nights or the side where a child might not be toilet trained...
    Or the fact us parents have to cry and shout on the phone every day to try and get an hour speech and language a month...or that I cry myself to sleep at night because I can't afford the €100 euro private therapy or the fact I have to nearly beg for a medical card...or the humiliation of failing out a two page document on why my child needs nappies I can't buy in the shop..
    Sorry for rant ..

    Right there with you Harr.

    Nothing worse than being told by someone who has never met your child that they don't need any more care or attention of than a child of the same age.


  • Registered Users, Registered Users 2 Posts: 508 ✭✭✭purpleisafruit


    Right there with you Harr.

    Nothing worse than being told by someone who has never met your child that they don't need any more care or attention of than a child of the same age.
    I remember filling in the DCA form as a particularly brutal experience. About 12 pages of a form plus your GP has to fill in some too.
    I've got a university education and found it confusing. God help anyone who had literacy issues trying to fill it in.
    As a further tip, if you apply for DCA, you also get Respite Care grant. It's currently €1700 and is paid in June every year. You can use that money in any way that you choose. We are lucky that we get to use it to bring our little fella on holidays.


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    harr wrote: »
    While I did enjoy the program and it was great to see RTE discuss autism and to show it's not the end of the world for some...I would have liked them to show the other side of autism maybe children who are not so high functioning.
    My lad is ten non verbal and is low functioning I think it would have been better to show that side as well..the side where a child might not sleep for 3-4 nights or the side where a child might not be toilet trained...
    Or the fact us parents have to cry and shout on the phone every day to try and get an hour speech and language a month...or that I cry myself to sleep at night because I can't afford the €100 euro private therapy or the fact I have to nearly beg for a medical card...or the humiliation of failing out a two page document on why my child needs nappies I can't buy in the shop..
    Sorry for rant ..

    That's what annoyed me the most about it you have your man Harris sitting there talking about equality rights when the building around him is on fire.

    You want to do good on this issue that impacts you how about you tackle your brother. I mean he more than any is in a position to help so man kids impacted by this.


  • Registered Users, Registered Users 2 Posts: 508 ✭✭✭purpleisafruit


    Calhoun wrote: »
    That's what annoyed me the most about it you have your man Harris sitting there talking about equality rights when the building around him is on fire.

    You want to do good on this issue that impacts you how about you tackle your brother. I mean he more than any is in a position to help so man kids impacted by this.
    I hadn't realised that they were related until I watched it. Had a discussion with the Mrs and we concluded that he's probably scared of the potential backlash from other sectors with needs if he started to put more funding into ASD services. It's sad really as the results that can be achieved from Early Intervention are vastly improving lives. It's frustrating as hell though.
    We're very lucky that our 4 year old goes to school locally and they have a specialist ASD unit for the full primary cycle. The Rainbow Club in Cork are also doing amazing work with ASD kids, completely voluntary without any government funding


  • Registered Users, Registered Users 2 Posts: 4,494 ✭✭✭harr


    I remember filling in the DCA form as a particularly brutal experience. About 12 pages of a form plus your GP has to fill in some too.
    I've got a university education and found it confusing. God help anyone who had literacy issues trying to fill it in.
    As a further tip, if you apply for DCA, you also get Respite Care grant. It's currently €1700 and is paid in June every year. You can use that money in any way that you choose. We are lucky that we get to use it to bring our little fella on holidays.
    Yes we do get the Grant, like you we use for a small holiday and to fill the oil tank...only a small holiday down the country as we can't fly with him or travel to far from home.
    The form filing is nearly a full time job...the one question that bugs me most is on the medical card Application where they ask how long do I recon my son will have this problem or condition 🙄


  • Registered Users, Registered Users 2 Posts: 508 ✭✭✭purpleisafruit


    harr wrote: »
    Yes we do get the Grant, like you we use for a small holiday and to fill the oil tank...only a small holiday down the country as we can't fly with him or travel to far from home.
    The form filing is nearly a full time job...the one question that bugs me most is on the medical card Application where they ask how long do I recon my son will have this problem or condition 🙄
    I get tasked with filling out those forms as they upset the wife too much. I'm also a natural pessimist so that helps in this case :D


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    I get tasked with filling out those forms as they upset the wife too much. I'm also a natural pessimist so that helps in this case :D

    I have to fill them out also as my wife is too generous to our daughter. We recently had assessment for aim assistance in the Creche and the lady doing the assessment found my daughter's condition to be worse than my wifes.


  • Registered Users, Registered Users 2 Posts: 7,447 ✭✭✭Calhoun


    I hadn't realised that they were related until I watched it. Had a discussion with the Mrs and we concluded that he's probably scared of the potential backlash from other sectors with needs if he started to put more funding into ASD services. It's sad really as the results that can be achieved from Early Intervention are vastly improving lives. It's frustrating as hell though.
    We're very lucky that our 4 year old goes to school locally and they have a specialist ASD unit for the full primary cycle. The Rainbow Club in Cork are also doing amazing work with ASD kids, completely voluntary without any government funding

    The only thing I'll say is it's not ASD services as such the spree centres cover allot of early intervention problems and should be funded.


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