Just found out my son has autism

Motherof123 · 18-11-2019 9:11pm

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!

Calhoun · 19-11-2019 12:22am

Motherof123 wrote: »

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.

Motherof123 · 19-11-2019 1:04am

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

Calhoun · 19-11-2019 1:16am

Motherof123 wrote: »

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/.

Motherof123 · 20-11-2019 12:21am

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

Calhoun · 20-11-2019 12:50am

Motherof123 wrote: »

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.

Just found out my son has autism

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