Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie

Trying to Figure Out What, If Anything is Wrong

Options
  • 28-01-2020 10:03pm
    #1
    Registered Users Posts: 14,975 ✭✭✭✭


    Hi Folks,

    Looking for some advice as to how to really go about getting my 2 year 8 month old assessed. So some background information.

    She's a little genius who understands everything in both English and Polish (my partner is Polish). She has a great understanding of things, context in a situation, knows her alphabet, all the animals including lots of weird ones etc, numbers and so on. She has a sense of humour, is loving etc. Where we run into problems is this:

    She has a severe speech delay and at heading towards 3, she really only has 6 or 7 words which are vocally similar, Mama, Gaga (Dada), Oko (Polish for eye), Baba (herself), Coco (a toy train) and a few others.

    She also doesn't know how to interact with other kids. She is very possessive of a toy and goes a bit nuts if another kid tries to take it off of her. We tried her in creche early enough but she wasn't walking at that stage (she was just inside the timeframe for walking). We left it until a few months ago and again it was a disaster. She'd freak out when the class started singing. When we're out at soft play she gets very distressed when there are kids screaming with excitement. One Saturday just recently the two of us were in a cafe where the background noise from lots of chatter and music was quite 'noisy' and she freaked out getting very upset. To contrast that she loves the hoover, washing machine, dishwasher etc, now doesn't really mind public hand dryers which she previously didn't like.

    So from what we can ascertain, there seems to be some sort of sensory issue but I'm not sure exactly what may be up and what the best course of action is. We applied for early intervention but just got a letter back today saying she didn't need it by the sound of the form we filled in (this was before we really knew there was a possible sensory issue).
    Also we applied for an assessment of needs. Based on that the HSE folk came back to say she didn't sound like she needed a full assessment so we're on the waiting list to see an occupational therapist, child psychologist and a speech therapist. That'll be a wait time of between 5 to 12 months.

    In the meantime my partner brought her to Sensory Kids, a Polish place just off of the Longmile Road in Dublin. Based on one session there and whatever information my partner had supplied she gave an initial assessment that she has some sort of sensory deficit. I'm kinda clueless as to what that means so will be heading along to the next session to ask some questions.

    My query really is this. Having applied to two different programs in the HSE, referrals being suggested, long waiting times, different departments being mentioned etc, is there one central point of contact you can speak with to try and get a clearer overall view of what's going on or what we should be doing.


«1

Comments

  • Registered Users Posts: 1,324 ✭✭✭happywithlife


    Hi Folks,

    Looking for some advice as to how to really go about getting my 2 year 8 month old assessed. So some background information.

    She's a little genius who understands everything in both English and Polish (my partner is Polish). She has a great understanding of things, context in a situation, knows her alphabet, all the animals including lots of weird ones etc, numbers and so on. She has a sense of humour, is loving etc. Where we run into problems is this:

    She has a severe speech delay and at heading towards 3, she really only has 6 or 7 words which are vocally similar, Mama, Gaga (Dada), Oko (Polish for eye), Baba (herself), Coco (a toy train) and a few others.

    She also doesn't know how to interact with other kids. She is very possessive of a toy and goes a bit nuts if another kid tries to take it off of her. We tried her in creche early enough but she wasn't walking at that stage (she was just inside the timeframe for walking). We left it until a few months ago and again it was a disaster. She'd freak out when the class started singing. When we're out at soft play she gets very distressed when there are kids screaming with excitement. One Saturday just recently the two of us were in a cafe where the background noise from lots of chatter and music was quite 'noisy' and she freaked out getting very upset. To contrast that she loves the hoover, washing machine, dishwasher etc, now doesn't really mind public hand dryers which she previously didn't like.

    So from what we can ascertain, there seems to be some sort of sensory issue but I'm not sure exactly what may be up and what the best course of action is. We applied for early intervention but just got a letter back today saying she didn't need it by the sound of the form we filled in (this was before we really knew there was a possible sensory issue).
    Also we applied for an assessment of needs. Based on that the HSE folk came back to say she didn't sound like she needed a full assessment so we're on the waiting list to see an occupational therapist, child psychologist and a speech therapist. That'll be a wait time of between 5 to 12 months.

    In the meantime my partner brought her to Sensory Kids, a Polish place just off of the Longmile Road in Dublin. Based on one session there and whatever information my partner had supplied she gave an initial assessment that she has some sort of sensory deficit. I'm kinda clueless as to what that means so will be heading along to the next session to ask some questions.

    My query really is this. Having applied to two different programs in the HSE, referrals being suggested, long waiting times, different departments being mentioned etc, is there one central point of contact you can speak with to try and get a clearer overall view of what's going on or what we should be doing.

    If on Facebook have a look at the DCA Warrior page. Post bumped up tonight by admin asking people not to get fobbed off by what seems to be an informal (?) hse policy to initially refuse an AON on the grounds that the child should instead apply for x/y/z
    You can self refer for AON so I'd go back to it and look again at what they said regarding the AON and push for it. Don't take no for an answer
    I think we have pm'ed before about the speech delay. My experience has shown that in hindsight I should have been a lot more vocal about kicking up a stink when my son's AON wasn't initially completed. It's delayed his therapy by years at this stage & he's struggling in school now as a result of lack of access to vital services
    You can also ask your GP and other service providers for a referral to a paediatric neurologist which I wasn't aware of until recently. We are awaiting a consultation soon as it's felt my son has multiple issused across a number of areas - not all severe but when you start joining a whole load of little dots its only then the bigger picture can sometimes emerge.
    Good luck with it


  • Registered Users Posts: 270 ✭✭Hani Kosti


    Is it developmental psychologist you've been waiting on? If so and it is in Dublin, the waiting is about a year (we knew early on our child will need one at age of 2, the letter was sent shortly after her 1st Bday and was seen two weeks before her 2nd birthday).
    Most likely it is your best bet, the assessments is extremely thorough (about 2.5-3h depending on child) and goes from gross to fine motor skills, language skills to problem solving while taking into account how your child reacts during each task (you're there the entire time).
    Thinking of you and your little one, hope you can get sorted and get all the help you need


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



    So from what we can ascertain, there seems to be some sort of sensory issue but I'm not sure exactly what may be up and what the best course of action is. We applied for early intervention but just got a letter back today saying she didn't need it by the sound of the form we filled in (this was before we really knew there was a possible sensory issue).
    Also we applied for an assessment of needs. Based on that the HSE folk came back to say she didn't sound like she needed a full assessment so we're on the waiting list to see an occupational therapist, child psychologist and a speech therapist. That'll be a wait time of between 5 to 12 months.

    Your first mistake is listening to anything the HSE staff tell you and believing it. I am not sure why you wouldn't go for the assessment of needs, it is just that it assesses your child from a multi-displinary perspective.

    Before you think im just jaded complaining about it let me explain, the assessment of need has legal and statutory requirements that are enforceable which is why they more than likely don't want you going near it because they have set timelines they have to come back to you with. In my case they did not abide by the legal requirements of the AON the first time around, the second time around they still have not given us all we need and we are taking legal action at this time.

    Once the AON has been completed they will then provide you with a service statement which then should have the list of all the items your daughter needs. I met with my solicitor regarding the AON yesterday and its getting to the stage where the recommendations in the service statement are nearly becoming legally binding. The HSE are crapping themselves right now as they do not want precedence set in law so they are giving people services but they could be legally compelled to give them based on the service statement in the near future.

    As advised above the thing your looking for on what you need to do/ whats going on should actually be the AON.

    I would also say I hope you don't think that once you get your appointment that is it your done. Unless your daughter has a simple issue that can be solved in a session or two you more than likely won't get enough sessions (I believe we got 6 sessions in 2 years). In your case you have to be careful as there is no incentive for them to stick to anything.

    They are even going as far as throwing allot of parental courses out with the threat of removing your child from the waiting list if you don't attend. Don't get me wrong I do think parents should do these but they should not be the only service you get in a 2-3 year period and are no replacement for expert services.


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


    If you have the money and want to get her assessed privately while you wait for the HSE. Caint are the people they use in the Kildare/ Laois area I am not sure who the use in Dublin.

    http://www.caintspeechtherapy.ie/


  • Registered Users Posts: 13,288 ✭✭✭✭fits


    Caint are very good.

    Our entry point to investigations was the area medical officer. We are not in greater dublin area though. Our GP referred us but public health nurse can also.


  • Advertisement
  • Registered Users Posts: 40,291 ✭✭✭✭Gatling


    Went through a very familiar situation with my little one ,
    Delayed speech ,and very public melt downs despite being ok with noise at home.despite concerns raised to health nurse and gp
    We got a full needs of assessment at 3 and a half through preschool
    ,diagnosed with a severe speech disorders and ASD traits but not a full diagnosis ,
    Being on the HSE lists for early intervention (never received) then on to the school aged team over 3 years and still no therapy of any kind ,
    Getting private speech therapy now , after being told were 200 on the HSE waiting list and would likely would start secondary before been seen ,

    Catts in clondalkin comes highly recommended for SLT


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


    You can request the AON to be redone as they grow older as advised above the service statements are starting to be used to get services where the need is described as ASAP


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


    You can request the AON to be redone as they grow older as advised above the service statements are starting to be used to get services where the need is described as ASAP


  • Registered Users Posts: 620 ✭✭✭niallo32


    Am bringing my near four year old to CATTS in Clondalkin - think they're very good


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    If on Facebook have a look at the DCA Warrior page. Post bumped up tonight by admin asking people not to get fobbed off by what seems to be an informal (?) hse policy to initially refuse an AON on the grounds that the child should instead apply for x/y/z
    You can self refer for AON so I'd go back to it and look again at what they said regarding the AON and push for it. Don't take no for an answer
    I think we have pm'ed before about the speech delay. My experience has shown that in hindsight I should have been a lot more vocal about kicking up a stink when my son's AON wasn't initially completed. It's delayed his therapy by years at this stage & he's struggling in school now as a result of lack of access to vital services
    You can also ask your GP and other service providers for a referral to a paediatric neurologist which I wasn't aware of until recently. We are awaiting a consultation soon as it's felt my son has multiple issused across a number of areas - not all severe but when you start joining a whole load of little dots its only then the bigger picture can sometimes emerge.
    Good luck with it

    Sorry for the delay in replying, have only gotten a chance now. We got a letter on Friday from the AON saying that it was going to be so long in getting looked at, that we should apply for Special Intervention. Early last week we had got a letter refusing us for that. Also one application form says you can't be on X if you've applied to Y and vice versa.
    I was at the GP with the little one for an unrelated matter on Friday and asked the GP about it. She said we should have had an initial assessment within the 3 months... which hasn't happened and looks to be far off from happening. She basically said we'd need to shout a lot louder.

    I'll have a look at at that Facebook page. Will get to other replies shortly. Thanks folks.


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


    Sorry for the delay in replying, have only gotten a chance now. We got a letter on Friday from the AON saying that it was going to be so long in getting looked at, that we should apply for Special Intervention. Early last week we had got a letter refusing us for that. Also one application form says you can't be on X if you've applied to Y and vice versa.
    I was at the GP with the little one for an unrelated matter on Friday and asked the GP about it. She said we should have had an initial assessment within the 3 months... which hasn't happened and looks to be far off from happening. She basically said we'd need to shout a lot louder.

    I'll have a look at at that Facebook page. Will get to other replies shortly. Thanks folks.

    The AON has legally defined timelines that they need to stick to internally or outsource.

    If you need to shout louder and have the financial means I would recommend Gareth Noble. He specializes in this type of law.

    Your GP is correct, early intervention is critical for children with special needs.


  • Registered Users Posts: 13,288 ✭✭✭✭fits


    Parents shouldn’t have to do this :(.


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


    fits wrote: »
    Parents shouldn’t have to do this :(.

    Indeed and to anyone reading this thread please help us shout when you talk with your elected representative.


  • Registered Users Posts: 40,291 ✭✭✭✭Gatling


    The HSE can and do outsource AONs we had ours done at a place in walkingstown Dublin eventually ,

    Op have you had your childs hearing checked at all ? If not it might be worth looking into as well


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    Hani Kosti wrote: »
    Is it developmental psychologist you've been waiting on? If so and it is in Dublin, the waiting is about a year (we knew early on our child will need one at age of 2, the letter was sent shortly after her 1st Bday and was seen two weeks before her 2nd birthday).
    Most likely it is your best bet, the assessments is extremely thorough (about 2.5-3h depending on child) and goes from gross to fine motor skills, language skills to problem solving while taking into account how your child reacts during each task (you're there the entire time).
    Thinking of you and your little one, hope you can get sorted and get all the help you need

    Eh I'm not too sure. We filled out the application for for AON and they recommended she see the psychologist, occupational therapist and a speech therapist. As you said, there's a long waiting list.


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    Calhoun wrote: »
    Your first mistake is listening to anything the HSE staff tell you and believing it. I am not sure why you wouldn't go for the assessment of needs, it is just that it assesses your child from a multi-displinary perspective.

    Before you think im just jaded complaining about it let me explain, the assessment of need has legal and statutory requirements that are enforceable which is why they more than likely don't want you going near it because they have set timelines they have to come back to you with. In my case they did not abide by the legal requirements of the AON the first time around, the second time around they still have not given us all we need and we are taking legal action at this time.

    Once the AON has been completed they will then provide you with a service statement which then should have the list of all the items your daughter needs. I met with my solicitor regarding the AON yesterday and its getting to the stage where the recommendations in the service statement are nearly becoming legally binding. The HSE are crapping themselves right now as they do not want precedence set in law so they are giving people services but they could be legally compelled to give them based on the service statement in the near future.

    As advised above the thing your looking for on what you need to do/ whats going on should actually be the AON.

    I would also say I hope you don't think that once you get your appointment that is it your done. Unless your daughter has a simple issue that can be solved in a session or two you more than likely won't get enough sessions (I believe we got 6 sessions in 2 years). In your case you have to be careful as there is no incentive for them to stick to anything.

    They are even going as far as throwing allot of parental courses out with the threat of removing your child from the waiting list if you don't attend. Don't get me wrong I do think parents should do these but they should not be the only service you get in a 2-3 year period and are no replacement for expert services.

    We did go for the assessment of needs and as such are on the waiting list. We got feedback that the times are so long, we should apply to the early intervention team. We had done, they rejected us and told us to go for the assessment of needs, which we had already applied or anyway.

    I am under no illusion that there's a quick fix for anything and we are firmly in this for the long haul with our little lady. It does appear that she'll be outside of the 3 month time frame for her initial assessment. I'm not sure whether it's worth taking them to task on that legally or not. Could it impact on future services I wonder.


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    Gatling wrote: »
    Went through a very familiar situation with my little one ,
    Delayed speech ,and very public melt downs despite being ok with noise at home.despite concerns raised to health nurse and gp
    We got a full needs of assessment at 3 and a half through preschool
    ,diagnosed with a severe speech disorders and ASD traits but not a full diagnosis ,
    Being on the HSE lists for early intervention (never received) then on to the school aged team over 3 years and still no therapy of any kind ,
    Getting private speech therapy now , after being told were 200 on the HSE waiting list and would likely would start secondary before been seen ,

    Catts in clondalkin comes highly recommended for SLT

    How did you manage and how did you little one cope? Our concern is that we tried creche twice and she really didn't like it, she'd get very very upset when the kids started singing. With her ECCE placement coming up this year we're concerned as to how things will go and want to make sure we're doing all we can do.

    Knowing that we couldn't fully rely on the HSE we have her seeing Sensory Therapy on the Long Mile Road. She's getting help there from an occupational therapist, a speech therapist and they are devising an audio course of some sort for her (I'm not fully au fait with what that entails).

    I don't know if it's coincidental but after starting that she's become more vocal, trying to say the words she sees in books, pronouncing the sound of letters and has come out with some new words as well. If you say 'Ready Steady.....' she'll finish with Go, which is amazing. She's also mimicking the sounds of animals and came out on Monday with a full on proper 'Miaow'. It absolutely melted my heart.


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    Gatling wrote: »
    The HSE can and do outsource AONs we had ours done at a place in walkingstown Dublin eventually ,

    Op have you had your childs hearing checked at all ? If not it might be worth looking into as well

    We did indeed get it checked. Next to check off the list is having her Adenoids checked to make sure there's no issues there.


  • Registered Users Posts: 14,975 ✭✭✭✭Kintarō Hattori


    Sorry for the delay in replying folks. I've been so exhausted in the evenings that I couldn't face logging onto the laptop when I had an hour or two free in the evening.


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


    We did go for the assessment of needs and as such are on the waiting list. We got feedback that the times are so long, we should apply to the early intervention team. We had done, they rejected us and told us to go for the assessment of needs, which we had already applied or anyway.

    I am under no illusion that there's a quick fix for anything and we are firmly in this for the long haul with our little lady. It does appear that she'll be outside of the 3 month time frame for her initial assessment. I'm not sure whether it's worth taking them to task on that legally or not. Could it impact on future services I wonder.

    I didn't know the early intervention teams could reject you, that is crazy. They went the other way with us and brought us in for early intervention but aged us out.

    I do not believe that taking them to task on it legally will impact on future services, in fact its probably the only way you will get things done. The HSE will essentially leave you waiting unless your pushing them hard.

    You don't even have to go legal initially, we went with a local TD at first. Even with all that they messed it up and we still have to get a service statement. However going the legal route can push them along.

    Please read this thread though https://www.boards.ie/vbulletin/showthread.php?t=2058052960 as they are now changing the assessment of need.


  • Advertisement
  • Registered Users Posts: 40,291 ✭✭✭✭Gatling


    Calhoun wrote: »
    I didn't know the early intervention teams could reject you, that is crazy. They went the other way with us and brought us in for early intervention but aged us out.

    We went through similar not officially rejected but my child was in preschool and they sent her to the school aged team who in turn sat on here file for several years until a teacher went into chamber house and asked what the delay was and why this child wasn't getting any support despite having an extensive Aon and other reports .

    I'm at the stage where I tell parents once the Aon is done go private for SLT and don't wait for the HSE ,
    Were over 6 years waiting on SLT waiting lists and would still be waiting if we didn't go private


  • Registered Users Posts: 40,291 ✭✭✭✭Gatling


    We did indeed get it checked. Next to check off the list is having her Adenoids checked to make sure there's no issues there.

    It's one thing kinda missed with early speech issues hence why I suggested it ,
    And in saying that SLT looked at my childs tonsils and said they look big for their age (never thought about it previously)


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


    Gatling wrote: »
    We went through similar not officially rejected but my child was in preschool and they sent her to the school aged team who in turn sat on here file for several years until a teacher went into chamber house and asked what the delay was and why this child wasn't getting any support despite having an extensive Aon and other reports .

    I'm at the stage where I tell parents once the Aon is done go private for SLT and don't wait for the HSE ,
    Were over 6 years waiting on SLT waiting lists and would still be waiting if we didn't go private

    For sure I agree if you have the means definitely don't wait around. However its worth keeping the fight up because its stuff they should be doing.

    It hilarious how broken the health service is and not just at a national level but its in a position where service level differs by region.

    One of the suggestions being put forward by the parent group I am in is to clear the backlog privately (HSE pays) and then staff the place when its reduced.


  • Registered Users Posts: 40,291 ✭✭✭✭Gatling


    Calhoun wrote: »
    One of the suggestions being put forward by the parent group I am in is to clear the backlog privately (HSE pays) and then staff the place when its reduced.

    I'd like to see more men and less women in certain roles especially where there is issues of staff replacements when women go off on maternity leave and their cover them happens to go off on maternity leave too , which I personally seen as well as not finding replacements in advance of others reaching retirement.

    They also need to look at the number's being referred for Aons I believe some kids don't actually need Aon's which in turn is adding to the backlogs.


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


    Gatling wrote: »
    I'd like to see more men and less women in certain roles especially where there is issues of staff replacements when women go off on maternity leave and their cover them happens to go off on maternity leave too , which I personally seen as well as not finding replacements in advance of others reaching retirement.

    They also need to look at the number's being referred for Aons I believe some kids don't actually need Aon's which in turn is adding to the backlogs.

    Unfortunately that is similar to the HSE trying to put pressure on parents when it comes to staging. Its a bit of a cop out to say because they are women and going on maternity leave that's the issue.

    The staffing levels need to be adjusted to take this into account.

    As for the AON, there probably should be pre-screening as I know that allot of the pay for diagnosis have muddied the water and increased the times as such.


  • Registered Users Posts: 13,288 ✭✭✭✭fits


    Services are completely understaffed and no amount of restructuring will fix that.therapists Maternity leave shouldn’t impact on service.

    In a way we are lucky to have our diagnosis. My boy is in a preschool with 1-1 ratio two days a week ( 3 offered). He gets OT and physio from HSE. SLT is only thing we are waiting on at present and we go privately.


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


    I don't know if its just the FG led model, they have effectively built up the private sector in this space. No wonder they cannot get staff when they pay and rates that they spend privately is much more than what they offer internally.

    They would need to really look at how they source the whole space, maybe utilize the private with a plan to cut it off at some stage.

    We get zero services at the moment, non in any area. We are looking into some private stuff but its costly.


  • Registered Users Posts: 13,288 ✭✭✭✭fits


    Calhoun wrote: »
    I don't know if its just the FG led model, they have effectively built up the private sector in this space. No wonder they cannot get staff when they pay and rates that they spend privately is much more than what they offer internally.

    They would need to really look at how they source the whole space, maybe utilize the private with a plan to cut it off at some stage.

    We get zero services at the moment, non in any area. We are looking into some private stuff but its costly.

    My speech therapist says all the class that graduated with her left ireland as no jobs due to recession. It did untold damage to services.
    Heaps of therapist positions were announced in last budget but doesn’t square with hse moratorium. At least there is money there to tackle the problem now. If the govt is willing.


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


    fits wrote: »
    My speech therapist says all the class that graduated with her left ireland as no jobs due to recession. It did untold damage to services.
    Heaps of therapist positions were announced in last budget but doesn’t square with hse moratorium. At least there is money there to tackle the problem now. If the govt is willing.

    Thats another factor to consider but i also believe part of it was part of government policy to boost up the private sector.

    In the Laois area new applicants aren't applying because the wait list is so long.
    The best way to clear is through getting the private sector to clear while they hire in the support staff.


  • Advertisement
  • Registered Users Posts: 1,324 ✭✭✭happywithlife


    We did go for the assessment of needs and as such are on the waiting list. We got feedback that the times are so long, we should apply to the early intervention team. We had done, they rejected us and told us to go for the assessment of needs, which we had already applied or anyway.

    I am under no illusion that there's a quick fix for anything and we are firmly in this for the long haul with our little lady. It does appear that she'll be outside of the 3 month time frame for her initial assessment. I'm not sure whether it's worth taking them to task on that legally or not. Could it impact on future services I wonder.

    On the AON thing ....
    We are 2 yrs + waiting to get our's completed. Fill in the application form for the complaint. This took us several months to get processed. Complaint was upheld and date given for AON to be completed.
    But such is the lack of services even that comes with a blue appeal form you fill in immediately stating the Timeline outlined in the complaint procedure wasn't / isn't going to be upheld.
    This also takes months to process.
    Eventually however I've been told ultimately the HSE is compelled to outsource. If you can afford it a well versed solicitors letter may well be worth it.
    Ensure you get the service statement & try to get it implemented
    I would think getting to know your local TD and their office staff would be invaluable also
    From my experience :-(


Advertisement