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Autism spectrum

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  • 29-07-2019 2:40pm
    #1
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭


    Hey guys,


    posting this here as it is a little busier and sees more traffic then the subsection. I am with a girl whos son is nearly 3, he is a great little fella but is undiagnosed ASD but it is as clear as day he is. She has to wait for his diagnosis appointment and he seems to be just finding society even harder to adapt to. He has multiple meltdowns daily and also he is impossible to bring into a busy scenario weather it be a fun fair, shopping (All text book ASD) he holds his hands to his ears and is terrified as he is of all flying insects. Outside his meltdowns and his struggles he is a loving and fun boy. I am writing this as a form of support for my girlfriend as his difficulties are getting tough for her as he ages and gets more severe.



    If any parents have went through this i would appreciate any help. I have reffered him privately to try get some support it is costing a pretty sum but If it helps it is worth it.


    T.I.A


Comments

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    #2
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    It sounds like he might benefit from occupational therapy. Places like sensational kids in kildare offer the service at a subsidised rate. Its worth starting this sooner rather than later if he needs it. (and they will tell you if he doesnt)


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    #3
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    1. fits wrote: »
      It sounds like he might benefit from occupational therapy. Places like sensational kids in kildare offer the service at a subsidised rate. Its worth starting this sooner rather than later if he needs it. (and they will tell you if he doesnt)
    we are living in Northern ireland i am from the south so will look into this today thank you.


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    #4
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    I thought the NHS might be quicker off the mark with treatment than our HSE... maybe not.


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    #5
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    fits wrote: »
    I thought the NHS might be quicker off the mark with treatment than our HSE... maybe not.


    2 years waiting and still dicking about. Absolutely shocking with the HSE regarding this.


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    #6
    eviltwin
    Registered Users Posts: 17,495 ✭✭✭✭eviltwin


    Has he had an assessment of needs yet? If not apply for that ASAP. There is a huge waiting list for services, we ended up paying for a private diagnosis because we needed it to get the required school supports.

    Just see you are in NI. I don't know if the above is the same up there but your public health nurse or autism charity should be able to advise you.


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    #7
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    eviltwin wrote: »
    Has he had an assessment of needs yet? If not apply for that ASAP. There is a huge waiting list for services, we ended up paying for a private diagnosis because we needed it to get the required school supports.

    Just see you are in NI. I don't know if the above is the same up there but your public health nurse or autism charity should be able to advise you.


    to see the public health nurse is like applying for a mortgage when I say they are doing nothing i mean it, I have paid an hour for a private assessment this friday in Dublin to try give some clarity.


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    #8
    mordeith
    Registered Users Posts: 5,278 ✭✭✭mordeith


    Prestonites wrote: »
    to see the public health nurse is like applying for a mortgage when I say they are doing nothing i mean it, I have paid an hour for a private assessment this friday in Dublin to try give some clarity.

    It's important to get a diagnosis in order to secure support services in school.


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    #9
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    mordeith wrote: »
    Prestonites wrote: »
    to see the public health nurse is like applying for a mortgage when I say they are doing nothing i mean it, I have paid an hour for a private assessment this friday in Dublin to try give some clarity.

    It's important to get a diagnosis in order to secure support services in school.


    Yes diagnosis appointment with NHS is in November. We will have it done privately done before then


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    #10
    Cork2015!
    Registered Users Posts: 216 ✭✭Cork2015!


    I was in the same boat with my little woman. HSE wait in Cork is 2 years BEST CASE SCENARIO!!!!!
    Felt absolutely sickened when I was told this, did some research online and it seems the wait is more like 4 years+ so we decided to go private.
    We are using the sunflower clinic in Cork and are nearly at the end of the process and have results/diagnosis appointment next month

    The cost is not as bad as I thought it would be because you pay so much at each milestone i.e.
    x amount day 1
    x amount day of OT assessment
    x amount day of parent interview
    x amount of results meeting

    It is so so tough but like others have mentioned - You need to have a diagnosis before big school starts

    I hear you on the tantrums/difficulties, it is heart wrenching to see them going through all of this. Ever since Summer holidays started my little one has had a nightmare of a time, she just can't cope with the difference in not being in her school/routine

    Wish there was something I could do to help her, but unfortunately we have to play the long game :-(


  • Options
    #11
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    Cork2015! wrote: »
    I was in the same boat with my little woman. HSE wait in Cork is 2 years BEST CASE SCENARIO!!!!!
    Felt absolutely sickened when I was told this, did some research online and it seems the wait is more like 4 years+ so we decided to go private.
    We are using the sunflower clinic in Cork and are nearly at the end of the process and have results/diagnosis appointment next month

    The cost is not as bad as I thought it would be because you pay so much at each milestone i.e.
    x amount day 1
    x amount day of OT assessment
    x amount day of parent interview
    x amount of results meeting

    It is so so tough but like others have mentioned - You need to have a diagnosis before big school starts

    I hear you on the tantrums/difficulties, it is heart wrenching to see them going through all of this. Ever since Summer holidays started my little one has had a nightmare of a time, she just can't cope with the difference in not being in her school/routine

    Wish there was something I could do to help her, but unfortunately we have to play the long game :-(


    Money ain't the issue I will pay whatever if it helps her and me understand how to help him.

    I feel for her as much as I do him as she's lost.


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    #12
    shesty
    Moderators, Recreation & Hobbies Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 6,893 Mod ✭✭✭✭shesty


    In the meantime would it help to get some of those noise cancelling earphones for him, to see if they would help when out and about?I have been at a few local festivals this summer and have seen older kids wearing them.Not music ones, food and funfair festivals.Do you hink that would help?
    You have my sympathy to be honest, my eldest is not autistic but is a child who gets very overwhelmed very easily...she loves being out and about but we have to know her limit and extract her from things when we feel she has had enough before the meltdown comes.It is a big struggle, you want so much for them to be able to enjoy things like everybody else, and for yourselves too.It is very tough.


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    #13
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    shesty wrote: »
    In the meantime would it help to get some of those noise cancelling earphones for him, to see if they would help when out and about?I have been at a few local festivals this summer and have seen older kids wearing them.Not music ones, food and funfair festivals.Do you hink that would help?
    You have my sympathy to be honest, my eldest is not autistic but is a child who gets very overwhelmed very easily...she loves being out and about but we have to know her limit and extract her from things when we feel she has had enough before the meltdown comes.It is a big struggle, you want so much for them to be able to enjoy things like everybody else, and for yourselves too.It is very tough.


    You can't bring him to anything outside family numbers as his socio anxiety cripples him and then he wont leave his mother's side holding her hands to his ears. It's terrible for him as he can't enjoy what his sister's do and they in turn lose out too


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    #14
    Cork2015!
    Registered Users Posts: 216 ✭✭Cork2015!


    Prestonites wrote: »
    You can't bring him to anything outside family numbers as his socio anxiety cripples him and then he wont leave his mother's side holding her hands to his ears. It's terrible for him as he can't enjoy what his sister's do and they in turn lose out too

    We bought the ear defenders in Aldi recently (they also have them in Argos), it is for sure helping us. We could not go out in public as public bathrooms were a no go for her due to the hand dryers, but with the ear defenders she will come in with me in an emergency whereas before she would just wet herself rather than go in


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    #15
    Beef
    Registered Users Posts: 1,182 ✭✭✭Beef


    Prestonites wrote: »
    we are living in Northern ireland i am from the south so will look into this today thank you.

    Check out the Middletown Centre for Autism. I know they used to run free courses / parent training etc. Just meeting other parents might get you some good leads with private practitioners etc.

    https://www.middletownautism.com/

    Just to echo what others have said, services are difficult to access (via HSE at any rate) so going private is certainly the quickest way to access early intervention if you can afford it. The more you can do with him at an early age the better. Obviously you'll need a diagnosis, but Occupational Therapy, Speech and Language therapy etc. are all crucial at this point.

    Best of luck!


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    #16
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    Update on Isaac. He was brought for a hair cut, he was restrained by 4 barbers now has a haircut like the boy in the striped PJs me and his mother are arguing.

    It's blood hard on the wee man


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    #17
    shesty
    Moderators, Recreation & Hobbies Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 6,893 Mod ✭✭✭✭shesty


    Did you ever see "Pablo" OP?the kid's cartoon?


  • Options
    #18
    Prestonites
    Banned (with Prison Access) Posts: 304 ✭✭Prestonites


    shesty wrote: »
    Did you ever see "Pablo" OP?the kid's cartoon?


    Yes


  • Options
    #19
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    I think OT would really help you all to cope with these ‘activities of daily living’.

    Sorry to hear about the trip to barbers. If you can try to seek out someone who might specialize in haircuts for boys like yours.


  • Options
    #20
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Just found this and thought id offer my 2 cents worth.
    With autism, it is down to sensory overload. So with things like going to the barbers, try to go at an early time of day or ask if they will stay open a little later for his appointment if you cant find one who specialises in those with autism, then break him in gently. So start off small, with most things...
    Like getting in the car and going for a trip and then home again. Then extend it, this time going to see the barber / shop etc but not going in...gradually extend it little by little to expose him to more aspects of it.
    Ear defenders can be a god send, and its worth getting some really good ones to muffle most noises. However, lights, too may smells, too many colours etc can all over stimulate the senses and lead to a meltdown due to their inability to process each thing. It is just too much for their brains to process.
    So trips etc need to be planned, and activities broken up to avoid too much at once. You also need to look at white noise, perhaps something you can play music wise, or having a comfort toy etc so they know they can leave if they wish.. using something to signal to you, especially if they have trouble verbally communicating.
    There are loads of charities out there, and autism awareness are fantastic. It is also worth contacting your local nhs trust / social worker etc and asking if you have a community learning disability nurse or team that can help you and assist with resources etc to ensure that you can help as best you can. Exposure now and ensuring he doesnt end up in too rigid of a routine etc will make all the difference once he is older.


  • Options
    #21
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,475 Mod ✭✭✭✭byhookorbycrook


    mordeith wrote: »
    It's important to get a diagnosis in order to secure support services in school.

    Diagnosis no longer needed, access to support in school is now needs based.


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    #22
    Motherof123
    Registered Users Posts: 152 ✭✭Motherof123


    We have done the first two parts with the sunflower clinic just waiting on play school visit and report.
    How long do they usually take for the over all report I was told 12 weeks but I'm so impatient


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    #23
    Motherof123
    Registered Users Posts: 152 ✭✭Motherof123


    Cork2015! wrote: »
    I was in the same boat with my little woman. HSE wait in Cork is 2 years BEST CASE SCENARIO!!!!!
    Felt absolutely sickened when I was told this, did some research online and it seems the wait is more like 4 years+ so we decided to go private.
    We are using the sunflower clinic in Cork and are nearly at the end of the process and have results/diagnosis appointment next month

    The cost is not as bad as I thought it would be because you pay so much at each milestone i.e.
    x amount day 1
    x amount day of OT assessment
    x amount day of parent interview
    x amount of results meeting

    It is so so tough but like others have mentioned - You need to have a diagnosis before big school starts

    I hear you on the tantrums/difficulties, it is heart wrenching to see them going through all of this. Ever since Summer holidays started my little one has had a nightmare of a time, she just can't cope with the difference in not being in her school/routine

    Wish there was something I could do to help her, but unfortunately we have to play the long game :-(

    How did you find the sunflower clinic ?
    We are currently waiting for the final stages report should be ready in 4 weeks.
    My son is 3. He has great weeks and then he could have a very bad week where every single little thing upsets him. Domino effect. He can not communicate but can speak he sings songs all day and knows hundreds of words. But cannot ask for things or answer a question.
    Waiting on the public list is heart wrenching.
    They say early intervention is best but we cannot access this!
    We decided to go private because we cannot wait we want to help him ASAP!

    Does it make things a little easier after having the Assesment done and having a better idea where intervention is needed?

    Hope your little girl is doing well xx


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    #24
    JP Liz V1
    Registered Users Posts: 85,021 ✭✭✭✭JP Liz V1


    Any recommendations please of sensory chew toys for autistic boy nearly 2 who chews everything, goes throw many bottles and cups
    https://forumofgames.com/




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    #25
    shesty
    Moderators, Recreation & Hobbies Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 6,893 Mod ✭✭✭✭shesty


    I think if you google you can get them on the likes of Amazon??I saw a little guy with Down's in one of my kid's preschools who had a similar chewing fixation -he had one around his neck.

    https://www.cheapdisabilityaids.co.uk/arks-krypto-bite--chewable-smiley-face-necklace-100813-p.asp

    It was something similar to that.I can't recommend one above another, but I have seen them online and he had his on a loose hanging string around his neck for during the day, although he was under constant supervision in the preschool and I imagine they kept an eye on the string.If that helps.


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    #26
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    I think it’s trial and error. The shop in sensational kids stocks a lot of different kinds. Our boy goes for apples.


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    #27
    Cork2015!
    Registered Users Posts: 216 ✭✭Cork2015!


    we use mainly necklaces. we buy from aliexpress - take a few weeks to get here so normally order a good few at a time.

    They are a fraction of the price but quality that we have experienced so far is good


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    #28
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    Cork2015! wrote: »
    we use mainly necklaces. we buy from aliexpress - take a few weeks to get here so normally order a good few at a time.

    They are a fraction of the price but quality that we have experienced so far is good

    Would you be worried about the type of plastic used?


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    #29
    Cork2015!
    Registered Users Posts: 216 ✭✭Cork2015!


    fits wrote: »
    Would you be worried about the type of plastic used?

    They are made with 100% Silicone... I had the same thoughts as you initially so I ordered some from a well known irish company to compare.
    They were exactly the same (and i have an extremely strong suspicion that the company purchases them from aliexpress due to same packaging etc).

    The cost was more than 15x with the Irish company.

    She has used both and seems happy with both of them,

    I think like someone said a few posts back it is really about trial and error.

    I seen some pencil toppers advertised too but I was afraid that it would give her the habit of chewing on all pencils.

    I'm happy if she chews anything other than her hair to be honest


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    #30
    fits
    Registered Users Posts: 13,253 ✭✭✭✭fits


    My lad is three and his chewing is mostly of apples. Ive been worried about cords on necks etc but might look at getting some like these to see.


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