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Just found out my son has autism

  • 18-02-2017 10:44pm
    #1
    Registered Users Posts: 5


    Just found out my 3 year old has autism. The only thing we were every worried about was hes speech. We werent told if it was mild or moderate etc. have been doin speech therapy with him, very slow but he has a few words maybe 20 just one word. Hes in playschool and loves it. I was told he sometimes plays by himself but they think he is bright and is socializing a lil bit more every wk. im wondering will he ever talk? Does this mean he will be non verbal? I dont know anything about autism and im so confused. Hes a very happy boy. Doesnt mind change, loves people, he does flap hes hands when excited. Good sleeper and eatter. Doesnt have tantrums. Hes attention span isnt great at times he might zone out when he playing or watching telly. Loves music and always dancing. Any info would be great. Im just worried he will never talk and never have a normal life?


Comments

  • Registered Users, Registered Users 2 Posts: 299 ✭✭farmerwifelet


    Don't panic! My little lad was diagnosed at 4 and had barely any words. He is now 5 and very chatty! Like your little boy - he is cuddly and tactile and fairly laid back but he did have a few telltale signs. They don't say mild or moderate or anything like it anymore - they just say "on the spectrum" it can be a blessing though as when you are applying for therapy and allowances they cant say he is too mild to get it! Hang on to the positives. He can have a very normal life.

    It is a shock at first and such a worry will they be ok. First thing its ok to be upset and ok with it and upset again. Second thing if you are with a service (ours is enable ireland) but it depends on where you live ask if they have a social worker. You can apply for Domicilary care allowance and carers allowance. See if your service has a scheme for SNA's. We were very lucky and managed to get an SNA for our boy in playschool. We got a grant and used carers allowance to cover the balance.

    It is hard to come to terms with but he will be ok. Its not easy but you will both get there! The earlier they get diagnosed and the earlier they get help the better in the long run. Just keep talking to him - the words soak in even if you think they don't.


  • Registered Users Posts: 5 Elaine115


    Wow thank you so much for telling me that, at least i know now that he can do it. He is saying alot of words lately but speech therapy do ask is he saying it for what he wants or imitating words. Alot of time ive to say it first for him to say the word, like open when he hands me a bag or somthing to open.
    We were told that we can put him ina playschool for asd kids, that speech and OT teachers be there. I wanted to keep him in the playschool he in now cus he loves goin there, but i have to see whats best for him. He needs to be able to talk to go to big school.
    How do u get a sna in playschool?


  • Registered Users, Registered Users 2 Posts: 299 ✭✭farmerwifelet


    Enable ireland applied for a grant for me. TBH we were very lucky to get one! he was the only child in the whole county who had one. If the asd preschool is near you I would be very tempted to go for it. We could only get one nearly an hour away. I know you don't want to uproot him but if he has therapists on hand in the ASD one - it will make a huge difference to him. We found actual therapy sessions few and far between. We had a gap of nearly a year when some therapists left enable and they couldnt fill the posts.

    At first my boy only used words when he needed to - open, drink etc. wouldnt use sentences. If he gave me something to open I would say "mammy open for you?" oh you want a drink? water or squash? You want squash then. and slowly he started putting more words together. The more you repeat it to him the easier it will be for him to say it back. Now he says I want a drink.etc. just keep plugging away.


  • Registered Users Posts: 5 Elaine115


    Ah ok, i suppose he would get better help in that type of school. Havn't started any therapy with him yet, our first appt is in 2 wks.
    Yeh thats exactly what my son does hands me a drink, i have to say open or more. And he will say it. Sometimes says it himself. still babbles an awful lot. But i suppose he doesnt have all the words yet?
    Thanks for your reply :)


  • Registered Users, Registered Users 2 Posts: 299 ✭✭farmerwifelet


    Yup mine was the same - one word answers. Felt like pulling teeth sometimes. For every word he says there are three in there that will come later! : ) Its like doing the cha cha one step forward one step back but eventually you get more forward than back.

    It will come the more therapy he gets the better. My guy started in an ASD unit in school in September and he is making massive leaps forward. I was really worried at first would he go backwards (didn't), would he settle (he did), would he make friends (he did), would he pick up bad habits off kids worse than him (he didn't!).

    No bother I know its a rollercoaster. I cried for about 3 days solid when he was diagnosed. It just felt so unfair for him and me.


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  • Registered Users Posts: 5 Elaine115


    So your lad is in normal school now? The primary school here has an asd unit. So id love to send him to it. Just hope he is talking more by then. But ive over a year to work on that. So hopefully!!
    Yeh speech therapy is very frustrating when your getting no where. Just going to take more time.
    Im still in shock, all i can think about everyday. Wondering and hoping he will be ok and make friends and be happy etc.
    he is a happy chap now so he is ok in himself for now. And he does give us hugs etc. so thank god he not too into hes own lil world.
    Thanks for that. Knowing your lad is talking now and is ok makes me feel alot better


  • Moderators, Regional Midwest Moderators Posts: 11,144 Mod ✭✭✭✭MarkR


    My son is nearing 10 now, and was diagnosed at 4. Similar enough to your own case I think, sociable etc, but had some sensory issues. Very bad / no speech.

    6 years of various therapies (speech / aba) and he's progressing well. At 6 he finally started saying Mummy. Now he won't shut up sometimes!

    His diagnosis hasn't changed your son. Just gives you more options in regard to supports and services.

    Speech therapy is critical. Your health insurance (if you have it) may be able to help with therapies.


  • Moderators, Regional Midwest Moderators Posts: 11,144 Mod ✭✭✭✭MarkR


    Also, ASD units are great, but don't rule out ASD schools if available. My son goes to one, and gets a lot more 1:1 help than he ever could in a mainstream school.


  • Registered Users, Registered Users 2 Posts: 9,605 ✭✭✭gctest50


    A cat (might ! ) help him along like this little one :


    http://www.dailymail.co.uk/femail/article-3491674/Autistic-six-year-old-paints-cycles-SWIMS-tabby-feline-helped-voice.html


    Maine Coons like (generally) like water & are patient


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


    you have a golden few years ahead to sort out any issues

    dont wait for help from the state for anything

    beg borrow and steal and pay for therapys yourself now

    from your OP the kid sounds very mild and will have a happy normal life


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  • Registered Users, Registered Users 2 Posts: 299 ✭✭farmerwifelet


    My lad in ASD unit at the school. There is one teacher and two SNA's only 6 children in the class. It's a great ratio. In mainstream it would be one teacher and an sna (if very lucky) to 29 children. No way my little man would be able for it. He gets so much 1:1 with the SNA's its great. There are no ASD schools near me unfortunately.

    I know its quite overwhelming at first. Worrying how it will turn out for him but as MarkR said the diagnosis gives you options for support and services and you can start getting him the help he needs.

    If he is social with you its a great indicator that he will become more social as time goes by.


  • Moderators, Regional Midwest Moderators Posts: 11,144 Mod ✭✭✭✭MarkR


    And as Sept said, don't wait for the state. You'll be a long time waiting. It can be expensive, but therapy sessions are really important, and it's no time for waiting lists.


  • Registered Users, Registered Users 2 Posts: 1,785 ✭✭✭mohawk


    My fella was diagnosed at 3. Was over 4 before he was talking. He is 7 now and never shuts up. My son is in 1st class in mainstream. There is an SNA in his room and up until this year the SNA divided her time with my son and another boy. My son is able to manage without the SNA now that his writing and concentration have improved.
    This thread really highlights that it is a spectrum. We were never told mild or moderate. If I knew then (when my son was diagnosed) what I know now I wouldn't of kept myself up all night worrying about the future.

    As you mentioned speech as an area of concern I have posted a link from the Hanen Organisation, the HSE (on the rare occasion you see them) use a lot of their resources and base their therapy on the work these guys do.
    http://www.hanen.org/Programs/For-Parents/More-Than-Words.aspx


  • Registered Users Posts: 5 Elaine115


    Thank you for all ur replys. Maybe asd playschool be best, and ill go from there to c where he needs next. We are doing speech therapy at the moment. So seeings as we know now maybe she might approach it differently.
    I didnt know that story about the cat, thats very good! We cant have pets where we are living tho :-(


  • Registered Users Posts: 152 ✭✭Motherof123


    I was also recommended to do the Hanen programme anyone know where I can do this


  • Registered Users, Registered Users 2 Posts: 2,580 ✭✭✭frash


    I was also recommended to do the Hanen programme anyone know where I can do this

    This thread is a couple of years old at this stage but didn't want to leave you hanging....
    We did the Hannen program through our service provider at the time.

    It's all about slowing everything down thus prompting the child to finish sentences.

    e.g. Instead of Ready Steady Go, pause before the Go in the hope that the child will say it before you (once they know the phrase)


  • Registered Users Posts: 152 ✭✭Motherof123


    frash wrote: »
    This thread is a couple of years old at this stage but didn't want to leave you hanging....
    We did the Hannen program through our service provider at the time.

    It's all about slowing everything down thus prompting the child to finish sentences.

    e.g. Instead of Ready Steady Go, pause before the Go in the hope that the child will say it before you (once they know the phrase)

    Thank you I'll see if I can find any info on google also.
    Thanks for replying 👍🏻


  • Registered Users, Registered Users 2 Posts: 4,030 ✭✭✭yellow hen


    I bought the more than words book online and used it at home myself. Most of it is common sense but it's very useful to remind yourself of what you need to do. It's about €65 but you could sell it on after you've used it if you wanted.


  • Registered Users Posts: 152 ✭✭Motherof123


    yellow hen wrote: »
    I bought the more than words book online and used it at home myself. Most of it is common sense but it's very useful to remind yourself of what you need to do. It's about €65 but you could sell it on after you've used it if you wanted.

    Brilliant thanks so much I will have a look for that. Anything now to help is fantastic.
    Thanks for your info


  • Registered Users, Registered Users 2 Posts: 4,030 ✭✭✭yellow hen


    Brilliant thanks so much I will have a look for that. Anything now to help is fantastic.
    Thanks for your info

    I'm still not out of the speech woods yet but it does get better. There's no silver bullet so it's just little and often and most things and hope that things eventually go in and stay in.


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  • Registered Users Posts: 152 ✭✭Motherof123


    yellow hen wrote: »
    I'm still not out of the speech woods yet but it does get better. There's no silver bullet so it's just little and often and most things and hope that things eventually go in and stay in.

    We have booked for private OT to start in January and the plan was for speech then at the moment it's to get any communication with engagement instead
    Of just words. There's a major communication issue even tho he is well able to sing nursery rhymes and repeats things we say. Nothing functional.
    Very sad and very difficult and at the stage now I'm worried sick for his future. He is just 3 now. I kept telling myself he will be talking by 2.5 then I said he will be talking by 3. But concentrating too much on the words and missed a lot of other things.


  • Registered Users, Registered Users 2 Posts: 11,408 ✭✭✭✭dulpit


    We're currently doing the Hanen More Than Words course. 2 sessions down. We're doing it through Cope in Cork. Feel free to ask questions or pm me if you want. Can't guarantee I'll be very informative, but I can try...


  • Registered Users Posts: 152 ✭✭Motherof123


    dulpit wrote: »
    We're currently doing the Hanen More Than Words course. 2 sessions down. We're doing it through Cope in Cork. Feel free to ask questions or pm me if you want. Can't guarantee I'll be very informative, but I can try...

    Oh really is was recommended that we do this course but I wasn't sure where to access it. How much does it cost Id love to find somewhere to do it


  • Registered Users, Registered Users 2 Posts: 11,408 ✭✭✭✭dulpit


    Oh really is was recommended that we do this course but I wasn't sure where to access it. How much does it cost Id love to find somewhere to do it

    Ours is public, we were referred when our son was diagnosed about a year ago...


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


    Oh really is was recommended that we do this course but I wasn't sure where to access it. How much does it cost Id love to find somewhere to do it

    Pretty much go to your spraoi centre and they generally will send you on it so they don't have to do much else.

    Not saying the hanen course is bad but when it's the only support you get from the early intervention team before your passed on its annoying.


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    Pretty much go to your spraoi centre and they generally will send you on it so they don't have to do much else.

    Not saying the hanen course is bad but when it's the only support you get from the early intervention team before your passed on its annoying.

    I am in cork so I will ring around thanks a mill


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    Pretty much go to your spraoi centre and they generally will send you on it so they don't have to do much else.

    Not saying the hanen course is bad but when it's the only support you get from the early intervention team before your passed on its annoying.


    It really does feel like that with the early intervention they say it exists but you get passed from pillar to post the child then becomes to old for those services.
    They are all on great salaries and they don't seem to be under any major stress to work on the back log. I remember reading articles in the paper about families struggling to access services and here I am now.
    It's so Time wasting I have a folder full of letters and back and forth AON appeals and replys they are wasting more paper and people's time.
    Now I know why people go into fight mode to get access to any services for their kids.


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


    It really does feel like that with the early intervention they say it exists but you get passed from pillar to post the child then becomes to old for those services.
    They are all on great salaries and they don't seem to be under any major stress to work on the back log. I remember reading articles in the paper about families struggling to access services and here I am now.
    It's so Time wasting I have a folder full of letters and back and forth AON appeals and replys they are wasting more paper and people's time.
    Now I know why people go into fight mode to get access to any services for their kids.

    One of the better things we did was go to the human rights lawyer Garth Noble, an autism parental group ran a night with him speaking last year.

    Legally the only thing you have any room on is the AON as it is fairly iron clad, in our case they broke the law and we got it cleaned up and got some temporary psychologist services.

    The main thing is how he changes your mindset on how to deal with them. Push past the guilt that you are a bother and any staffing issues ECT is their issue.


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    One of the better things we did was go to the human rights lawyer Garth Noble, an autism parental group ran a night with him speaking last year.

    Legally the only thing you have any room on is the AON as it is fairly iron clad, in our case they broke the law and we got it cleaned up and got some temporary psychologist services.

    The main thing is how he changes your mindset on how to deal with them. Push past the guilt that you are a bother and any staffing issues ECT is their issue.

    Yeah I rang someone today in the HSE AON dept and she was on lunch at 2.45 I left a message with her colleague and was told she would ring me back when she returned. I got no phone call back.
    Like what exactly do they do?
    Fob people off


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


    Yeah I rang someone today in the HSE AON dept and she was on lunch at 2.45 I left a message with her colleague and was told she would ring me back when she returned. I got no phone call back.
    Like what exactly do they do?
    Fob people off

    I suppose they have their official reasons but I found them to be more of a deterrent/fob you off.

    Couple of tips that was given to me:

    1. the AON is very prescriptive in legally what they should do. It should be a multi-disciplined assessment and you must receive a full report and a service statement for it to be completed. In our case they only did 1-2 disciplines and used a report we paid for ourselves from Caint, and didn't finish the report or service statement in two years. They are currently reviewing and following up, as a part measure to shut us up we got some psychologist services.
    2. Check if they did the AON right, as that's really the only stick you have to beat with them.
    3. Make sure any correspondence is reasonable, don't give into the anger as they will use that against you. If you agree on anything over the phone make sure to follow up over email to confirm what they said so you have it in writing.
    4. Make sure all correspondences are done during or close to business hours as they will use that against you ig they can.

    The main thing the department fear is setting precedence as if they do that they have to roll out same service everywhere. There are a few cases hopefully coming up in soon which will push for more services for children with special needs.


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    I suppose they have their official reasons but I found them to be more of a deterrent/fob you off.

    Couple of tips that was given to me:

    1. the AON is very prescriptive in legally what they should do. It should be a multi-disciplined assessment and you must receive a full report and a service statement for it to be completed. In our case they only did 1-2 disciplines and used a report we paid for ourselves from Caint, and didn't finish the report or service statement in two years. They are currently reviewing and following up, as a part measure to shut us up we got some psychologist services.
    2. Check if they did the AON right, as that's really the only stick you have to beat with them.
    3. Make sure any correspondence is reasonable, don't give into the anger as they will use that against you. If you agree on anything over the phone make sure to follow up over email to confirm what they said so you have it in writing.
    4. Make sure all correspondences are done during or close to business hours as they will use that against you ig they can.

    The main thing the department fear is setting precedence as if they do that they have to roll out same service everywhere. There are a few cases hopefully coming up in soon which will push for more services for children with special needs.

    I got an email 6 weeks ago saying the HSE have agreed to outsource my son within 10 weeks.

    Finally someone from the HSE rang me 3 weeks after that email to confirm it!

    I was told over the phone in that call which is now 3 weeks ago .

    She asked would I like if my son was outsourced to a private clinic.
    I agreed I'm desperate!
    She said that a private clinic would be in touch within a week.
    I hung all happy on a high!
    The week passed and no private clinic made contact.
    That was 3 weeks ago.
    I rang today and was told she's on lunch. (Late lunch)
    Left my name and number.
    She will ring you back I was told.
    I watched my phone like a hawk for the duration of the afternoon. Waiting for the AON person from the HSE to ring me and leave me out of my misery of waiting and wondering!

    I'm actually exhausted from getting my hopes up.

    I got no phone call. So I dunno what happened the private clinic maybe she forgot to tell them what she told me.

    I'm so frustrated but I wouldn't let it be known to them.

    I probably come across on the phone as a desperado!


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


    I got an email 6 weeks ago saying the HSE have agreed to outsource my son within 10 weeks.

    Finally someone from the HSE rang me 3 weeks after that email to confirm it!

    I was told over the phone in that call which is now 3 weeks ago .

    She asked would I like if my son was outsourced to a private clinic.
    I agreed I'm desperate!
    She said that a private clinic would be in touch within a week.
    I hung all happy on a high!
    The week passed and no private clinic made contact.
    That was 3 weeks ago.
    I rang today and was told she's on lunch. (Late lunch)
    Left my name and number.
    She will ring you back I was told.
    I watched my phone like a hawk for the duration of the afternoon. Waiting for the AON person from the HSE to ring me and leave me out of my misery of waiting and wondering!

    I'm actually exhausted from getting my hopes up.

    I got no phone call. So I dunno what happened the private clinic maybe she forgot to tell them what she told me.

    I'm so frustrated but I wouldn't let it be known to them.

    I probably come across on the phone as a desperado!

    The outsourcing isn't bad and being honest its become the norm. It doesn't matter to us as parents as long as its done right, and on time. We did it with Caint in the midlands, not sure who they are referring you to but I am not surprised.

    I wouldn't bother waiting for a call back, keep on at them be persistent but polite.

    The HSE relies on you giving them time and taking the pressure off, they also rely on your ignorance. Can I make a suggestion though, from now on if you get a message that they are arranging something over the phone send her an email confirming the same, "Just confirming what we agreed on the phone and my son will go be sent to an outsourced clinic in xx weeks".

    I believe though they have 6 months to complete the AON (not exactly, as its 3 months to start and 3 months to complete).

    I also know the feeling your going through, but remember its a marathon we are running and not a circuit. I know that's easier said than done but don't let it eat you up work on moving forward.

    One of the big things that helped me was https://www.eventbrite.ie/e/gareth-noble-legal-roadshow-childrens-law-tickets-59760450115 the Gareth Nobel event. I am not sure If there are any events on in the next while but if your part of a parental autism group perhaps its something you guys could arrange. The main thing I got out of it was how you can work within the confines of the HSE and what to expect.

    All the best.


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    The outsourcing isn't bad and being honest its become the norm. It doesn't matter to us as parents as long as its done right, and on time. We did it with Caint in the midlands, not sure who they are referring you to but I am not surprised.

    I wouldn't bother waiting for a call back, keep on at them be persistent but polite.

    The HSE relies on you giving them time and taking the pressure off, they also rely on your ignorance. Can I make a suggestion though, from now on if you get a message that they are arranging something over the phone send her an email confirming the same, "Just confirming what we agreed on the phone and my son will go be sent to an outsourced clinic in xx weeks".

    I believe though they have 6 months to complete the AON (not exactly, as its 3 months to start and 3 months to complete).

    I also know the feeling your going through, but remember its a marathon we are running and not a circuit. I know that's easier said than done but don't let it eat you up work on moving forward.

    One of the big things that helped me was https://www.eventbrite.ie/e/gareth-noble-legal-roadshow-childrens-law-tickets-59760450115 the Gareth Nobel event. I am not sure If there are any events on in the next while but if your part of a parental autism group perhaps its something you guys could arrange. The main thing I got out of it was how you can work within the confines of the HSE and what to expect.

    All the best.

    Thanks so much for all your advice and help and for taking the time to reply.

    I should have asked for it in writing but I genuinely believed every word she said! I I waited for that outsourced clinic to contact me and I was very niave in thinking they will ring me now and they might do it all in the space of a week.
    Very niave so when I hear nothing for over two weeks my initial reaction was disappointment so I ring and she's on lunch and then the false promise again that she will ring me when she's back.

    I suppose with my son being unable to communicate I feel like this is an emergency and I would like to access some help.

    I can honestly say they are wasting valuable time.

    The eventbrite link you sent looks really good I'm in cork I will check if there is anything in my area.

    I'm doing everthing I can at home with my son to help with communication but I thought the professionals could help to make sure we are doing it the right way.

    Your right it is a marathon I'm exhausted already and we have just started.

    Thanks again for your info


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


    Thanks so much for all your advice and help and for taking the time to reply.

    I should have asked for it in writing but I genuinely believed every word she said! I I waited for that outsourced clinic to contact me and I was very niave in thinking they will ring me now and they might do it all in the space of a week.
    Very niave so when I hear nothing for over two weeks my initial reaction was disappointment so I ring and she's on lunch and then the false promise again that she will ring me when she's back.

    I suppose with my son being unable to communicate I feel like this is an emergency and I would like to access some help.

    I can honestly say they are wasting valuable time.

    The eventbrite link you sent looks really good I'm in cork I will check if there is anything in my area.

    I'm doing everthing I can at home with my son to help with communication but I thought the professionals could help to make sure we are doing it the right way.

    Your right it is a marathon I'm exhausted already and we have just started.

    Thanks again for your info

    No issues at all, its best we help each other as its not always easy to come by.

    Don't beat yourself up over taking their word for it, we were the same and it was really frustrating. My wife who is a teacher in a ASD unit handles it better than I do, I was equally frustrated as you are. Essentially though the best advice Gareth gave me is to make sure if they don't follow up in writing you do, at least then you have a paper trail if it ever goes to court (which it might).

    Our daughter is non-verbal also just started to talk in the past year (she is 6) has about 100 words or so. So I feel the pain with it, are you claiming your tax credit and getting the allowance? Its not allot but could cover a session or two of speech and language in a month. Would also recommend doing some research on the likes of Pecs (https://www.nationalautismresources.com/the-picture-exchange-communication-system-pecs/) the hanen training will also give you some knowledge on how to put in some form of communication. Our girl has a speech progam on an IPAD we can use and before that we just had a laminated book with pictures.

    Perhaps email his office and ask him if he has any more roadshows https://kodlyons.ie/our-team/.


  • Registered Users Posts: 152 ✭✭Motherof123


    Calhoun wrote: »
    No issues at all, its best we help each other as its not always easy to come by.

    Don't beat yourself up over taking their word for it, we were the same and it was really frustrating. My wife who is a teacher in a ASD unit handles it better than I do, I was equally frustrated as you are. Essentially though the best advice Gareth gave me is to make sure if they don't follow up in writing you do, at least then you have a paper trail if it ever goes to court (which it might).

    Our daughter is non-verbal also just started to talk in the past year (she is 6) has about 100 words or so. So I feel the pain with it, are you claiming your tax credit and getting the allowance? Its not allot but could cover a session or two of speech and language in a month. Would also recommend doing some research on the likes of Pecs (https://www.nationalautismresources.com/the-picture-exchange-communication-system-pecs/) the hanen training will also give you some knowledge on how to put in some form of communication. Our girl has a speech progam on an IPAD we can use and before that we just had a laminated book with pictures.

    Perhaps email his office and ask him if he has any more roadshows https://kodlyons.ie/our-team/.


    That's fantastic your daughter started using words.
    I think with my son i was telling myself by the age of 3 he will be talking fine. But he isn't but I have to remind myself he has made progress and realise its steps were making which is great.
    I suppose it's a lot to take in too we got the report last Thursday so it's still soaking in.
    I keep telling myself everything will fall into place it's just very hard to sit back and wait because I HAVE to be organised and HAVE to know what's going to happen. And with my sons situation there is no answer we have to wait and see.
    Thanks for all the tips.
    I met our GP Monday and gave her the dca and the tax credit forms to fill in.
    She said I can get them EnD of this week as she isn't working every day.
    I will Defo email Gareth and ask for any future road shows.
    That's great your wife is a teacher she probably has a lot of experience so with how to handle situations and what is available for your daughter.
    I heard the pecs is great but you need 2 people to teach the child how to use them.
    My son is a visual learner and i wanted to try this for him but an SLT would need to initiate it I guess.
    The seno rang me today and told me what I need to do next.
    Sent me a list of schools so that's my homework for the next two weeks contacting schools!
    It will keep me busy anyway.

    Thanks again


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


    That's fantastic your daughter started using words.
    I think with my son i was telling myself by the age of 3 he will be talking fine. But he isn't but I have to remind myself he has made progress and realise its steps were making which is great.
    I suppose it's a lot to take in too we got the report last Thursday so it's still soaking in.
    I keep telling myself everything will fall into place it's just very hard to sit back and wait because I HAVE to be organised and HAVE to know what's going to happen. And with my sons situation there is no answer we have to wait and see.
    Thanks for all the tips.
    I met our GP Monday and gave her the dca and the tax credit forms to fill in.
    She said I can get them EnD of this week as she isn't working every day.
    I will Defo email Gareth and ask for any future road shows.
    That's great your wife is a teacher she probably has a lot of experience so with how to handle situations and what is available for your daughter.
    I heard the pecs is great but you need 2 people to teach the child how to use them.
    My son is a visual learner and i wanted to try this for him but an SLT would need to initiate it I guess.
    The seno rang me today and told me what I need to do next.
    Sent me a list of schools so that's my homework for the next two weeks contacting schools!
    It will keep me busy anyway.

    Thanks again

    Thanks, the language for her has come bit by bit, kids with autism have to be motivated at times to do things. Tonight my wife was teaching her to say I, A and The.

    Its funny when our daughter was two and a half we thought she might have hearing problems and its investigating that which led us to her diagnosis. When we did get the diagnosis it hit my wife harder than it did me as I was dumb to what it meant but she knew, we both went through phase id describe as mourning for the future we thought she had lost but in time it gets better and you understand they will be ok and its up to you to make sure they have the best life. So I appreciate when you say its allot to take in and its not something that you should just get over easily.

    There are always stuff you can do, a great first step is the Hanen but what I would say to you is even when you get professional help allot of that can be undone by how things are handled at home. My wife teaches in a unit now but she has done 10 years in a unit as an SnA and one of the biggest mistakes she sees is not keeping the same level of discipline at home as expected at school.

    The tax credit and DCA help, id much prefer actual services but until then these help get them something. I don't know about your area but some of the local SnA's have gone out on their own and run classes ect that we have sent our girl to.

    As for Gareth, he is a solicitor and he does charge for his services. I have used him and he really helped get the HSE motivated to work with us. However the roadshow on its own is good for building your own resilience as he helps put into perspective how you work the systems so you can build a game plan.

    Its good and bad having my wife knowing the area as some times she gets too close, I have to step in at times. For example she has a big fear of putting our daughter into a unit because in her experience the more problem children get priority and the quite ones get overlooked but its getting to a stage where mainstream with an SnA is not doing our daughter any good and she is stimming allot.

    Let me ask her how she setup the pecs as she did it on her own, and our daughter just took it up relatively easily.

    What did the Seno say? be nice to them but like with the HSE do not assume they are there to work for you. For the most part their job seems to be to make their own lives easier. We had SnA hours cut in the first year of our daughter going to school because the report on her diagnosis didn't call out specifically that she was a flight risk and was not toilet trained. Maybe yours is better but you need to up your game and understand exactly what is required to get your child where they need to go. Do not assume just because you have a report with a diagnosis it will automatically open the doors for places ect.


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