Autism and Me

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!

Keyzer

SEPT 23 1989 wrote: »

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...

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.

Calhoun

purpleisafruit wrote: »

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.

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.

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?

eviltwin

Widdershins wrote: »

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.

Calhoun

smelly sock wrote: »

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.

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.

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.

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 ..

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.

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.

purpleisafruit

smelly sock wrote: »

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.

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.

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

harr

purpleisafruit wrote: »

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 🙄

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

Calhoun

purpleisafruit wrote: »

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

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.

Calhoun

purpleisafruit wrote: »

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.

purpleisafruit

Calhoun wrote: »

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.

Don't get me wrong, I see massive progress in my son and he's come along so much in the last year. I suppose that I am more attuned to what he can't do vs what he can do, due to my innate pessimism

The Black Oil

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/

The story with NEPS is an interesting one. It has often if not always been hamstrung when it comes to recruitment. Back in 2001, the weighty report of the Autism Task Force was published, stating:

The current target number of 200 NEPS psychologists to be employed by the end of 2003 will not be sufficient to realistically undertake the intensive individual work required for pupils with ASDs. Realistically, therefore, it may be some years before the National Educational Psychological Service is in a position to take a leading role within ASD educational provision.

This is Ireland, so I'd be surprised if the 200 figure was ever reached. The Impact link above suggests not.

I thought the documentary was very good.