3 year old son ASD - need advice - totally confused by the system!

mangotracy

Hi, many thanks in advance for anyone who replied.
My 3 year old son has had an ADOS test showing 'Moderate ASD'. Hearing test normal. Public Health Nurse agrees. Have done a 'Q Chat' which came out as high too. I've filled in forms for:
Early Intervention Team and
Assessment of Need

But I've heard that these all take ages. Meantime, I feel like I need to help my son now. Am in county Cork.

Should I start ABA therapy? What else can I do?:(

CaraMay

Hi op

Well done on being so proactive. Aba is the way to go.

I'm not in cork but I believe Shine in Cork are a great resource for parents.

To get a few € in the door which will help fund any therapies he needs, apply now for the incapacitated child tax credit. Have the highest earner over the last 3 years apply for it as they wouldn't give it to me for the year I was on maternity leave as I hadn't paid much tax. They then wouldn't let his dad apply for it either. Do they straight away as it's based on tax year.

Contact your local Seno to get home tuition rolling. They sigh off the forms and send them to the dept for funding approval.

Join aba Ireland on Facebook if you wish to advertise for an aba tutor. Joking autism mamai group on Facebook and they are a huge source if info.

You can also advertise on rollercoaster.ie under the special needs discussion forum.

Start your domicilary care allowance form. This entitled you to €300 per month. A lot if parents take carers leave from work for 2 years as the first few years with asd can be hectic with appointments etc so maybe this is something to look into.

Shine should be able to guide you from here.

If you are concerned about his gut / stomach issues the Dr Amy Herlihy in co cork should be able to get the appropriate tests done.

That's a lot of info for now.

Any questions?

mangotracy

Wow, thanks so much! The most informative response I've got so far, much better than any of the professionals... they've tried to help but have giving me conflicting and confusing advice - advised by GP last year to 'wait and see' - I wish I'd followed my instinct and not waited at all.

I've spoken to Shine who were excellent. I'll get these first things off and then see what I'm eligible for.

Just out of interest, I applied for a lovely local creche and was totally up front saying that my son had autistic traits etc - at first they were keen he started soon and said that there were definately spaces - I wanted him to experience a couple of mornings with other kids - he isn't aggressive or anything, in his own world a lot - and now they say there are no spaces and I have to wait. I wonder whether they were put off by his special needs?

CaraMay

It's hard to know. Get your home tuition sorted ASAP and maybe the tutor can go in with him to help him socialise etc. please don't hesitate to pm me with any questions at all.
Oh and I would be fussy about the crèche you send him to. You interview them rather than the other way around. No point sending him there if they aren't up to it.

CaraMay

Don't beat yourself up about waiting. Professionals are completely inexperienced re asd. 4 gp's told me I was wrong. He's still young so just get him started on the aba ASAP and if you can fund any therapies yourself get him stuck in.

yellow hen

I know very little about any of the above other than my son has been referred for an assessment of need. From what I read, it has to take place within 3 months though. Is that not right?

CaraMay

Yellow hen that's the ideal but due to staff shortages etc it rarely happens.

CaraMay

Op did you get an actual hse diagnosis? Maybe I didn't read it correctly? If you don't have a hse diagnosis get straight on to professor Fitzgerald and in to see him for a diagnosis. You won't get any of the ancillary services / payments if you don't have a diagnosis

yellow hen

CaraMay wrote: »

Op did you get an actual hse diagnosis? Maybe I didn't read it correctly? If you don't have a hse diagnosis get straight on to professor Fitzgerald and in to see him for a diagnosis. You won't get any of the ancillary services / payments if you don't have a diagnosis

Hope you don't mind me butting in here. Who is professor Fitzgerald?

mangotracy

Hi again, and many thanks, again!

I actually didn't get a diagnosis yet, but going to see psychologist (not Prof Fitzgerald, a woman) who was recommended in a couple of days for diagnosis. I had an ADOS report done by an Occupational Therapist which said ASD, filled in a 'QChat' which also scored high. Saw Public Health Nurse who was concerned about speech too. Had his hearing checked (normal). I self referred to SALT but when they phoned and I told them I had a 'moderate ASD symptoms' from the ADOS report they just told me to go to Early Intervention Team. So no SALT for ages yet either.

I thought I'd have a diagnosis/assessment sooner and was pretty shocked to hear how long it could take (referred to Early Intervention Team) - it could have been months to get anything confirmed.

In the meantime, whilst my son is not severe, I'm really worried about what he'll be like going to school, he doesn't talk or converse with us, talks to himself the whole time repeating things. And I'm unlikely to get services if I just wait. And yet everything that I've read in the last month seems to say start early!

mangotracy

I meant to say, am going to get a diagnosis privately done this week. It's only recently I realised that I wasn't going to get this anytime soon from health services.

poconnor16

Hi Mangotracy - I have been through something similar and I too am based in Cork. Shine were amazing and put me in the right direction. They recommended Laura Regan in Dungarvan and that's where we got our diagnosis. That's step one.
Next step, contact Shine again and deal with their advocacy officer who will help you with paperwork - there is a lot of it. You have lots of entitlements depending on your diagnosis. ABA is excellent if that's what you psychologist recommends - each child is different. Financial support may be available to you as it is costly.
Be sure to keep your public assessment moving also as you will need this.
Regarding crèche - I'd be very interested to know what can be done here? Any other boarders know?
Please pm me with anything you need.
Oh and well done for being an amazing and proactive mum - you are his voice, remember that x

mangotracy

Hi Poconnor,

Thanks, I have seen Laura Regan and am going back to Shine with our diagnosis, ABA recommended. There is a lot to do at this stage isn't there?

Yes, I do feel that a couple of sessions a week at a really nice creche would be very beneficial. Also, I feel that I would like to know early on what kind of difficulties my son will have, or maybe positives too. However, I don't know whether he'll need extra support from a tutor, or whether the creche is used to this.