Just found out my son has autism

Elaine115

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?

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.

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?

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.

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

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.

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

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.

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.

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

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

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.

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.

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

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 :-(

Motherof123

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

frash

Motherof123 wrote: »

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)

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 👍🏻

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.

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

yellow hen

Motherof123 wrote: »

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.

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.

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...

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

dulpit

Motherof123 wrote: »

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...

Calhoun

Motherof123 wrote: »

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.

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

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.

Calhoun

Motherof123 wrote: »

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.

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

Calhoun

Motherof123 wrote: »

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.