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#1 blueskies12

Posted 06 November 2019 - 07:50 PM

Dear Wise EB-ERS,

I am wondering if your child has access an early childhood development program? My son is 4.5 years, diagnosed with ASD (Asperger's/ASD level 1), SPD and low muscle tone at 3. He has fortnightly speech and fortnightly OT and does kindy 2 days a week, plus swimming lessons. I am grateful the kindy (pre-school) teacher is happy for him to have another year of kindy before school next year.

A spot has come up in our local ECDP (Early Childhood Development Program). This entails one full day a week there for a group of approximately 4 students, one teacher and two teacher aides. Nearly one-on-one. They also then do IEPs and transition them to school really well.

This means that my son would be doing two kindy days, one day of ECDP and OT/Speech another day, plus swimming lessons. I am feeling tired just looking at all of that. I am worried it will be too much. I am also worried that I won't get any time with him. I know that sounds selfish, but just with my my mum hat on, I wanted to really savour the last year with him before he goes to school.

My real concern is that there will such big varying needs in the program and that may not help him.

His kindy teacher is well aware of the program and thinks it is a good idea that he does it.

His OT is on the fence about whether it is suitable.

We went to the playgroup there today and met the staff. They wanted to meet my son and to see what he is like. They said he would be a good fit for the program.

He copes well with mainstream kindy. We can't do much the rest of the week socially-wise. He needs plenty of time to decompress. He has one friend at kindy and is always happy to go.

The ECDP program is like gold and very difficult to get into with such a huge waiting list.

Has anyone been in a similar situation?

I also realise that I also may be in denial that my son may need assistance. It was one thing to get diagnosed, one thing to start OT/Speech. So this may cloud my thinking too.

Then there is part of me that thinks goodness

Thank you for listening.

Edited by blueskies12, 06 November 2019 - 07:51 PM.


#2 blimkybill

Posted 06 November 2019 - 08:08 PM

What state are you in? In my state all programs like that were closed down when NDIS came in. Perhaps you are in Queensland, I think maybe that's the only state running that kind of program?
I think both perspectives are valid. Probably if he copes well with mainstream kinder he doesn't really need it, he may be learning well in his kinder. But maybe it will teach some extra skills which will be really helpful. It's hard to know and hard to make a decision like that. I can understand your wish to have time with him too, and i think that is really valid. Quality time with family is also really valuable. Perhaps you could start him there and see how it goes, see if you think it adds anything for him?

#3 AsperHacker

Posted 06 November 2019 - 08:21 PM

If the edcp is aba based, then absolutely not.

What do you think you child actually needs help with that isn't being provided by the OT, speechie and kindy? Are you looking at the edcp because it's *like gold* or is there something specific you think your child will get out of it?

Autistic kids need time out, often more so that other kids, and they need enough time with their families, just like other kids. I'd be looking at if the benefit is worth it. And working out what that benefit will actually be before deciding.

#4 SelceLisbeth

Posted 06 November 2019 - 08:40 PM

I did a similar program with my younger child. At the time I thought it was the right thing to do and was the best thing for him. Looking back at it more critically, he absolutely did not develop any additional skills from this program and it really just caused us a great deal of angst with a lot of the work triggering meltdowns. I think its a good idea to think about what you want from the program and what benefits you think your child might derive from it versus what benefits your child might derive from a bit of a break in between kinder, speech and OT.

ETA: That said, my child was 43 on the CARS score (at the time that indicated severe autism) and was completely non-verbal and incontinent with significant challenges.

Edited by SelceLisbeth, 06 November 2019 - 08:42 PM.


#5 blueskies12

Posted 06 November 2019 - 08:45 PM

Great ideas, AsperHacker and blimkybill. Thank you so much for writing. I really am thankful, because you have both said what I have been thinking..

I am in Qld. It is state run- attached to a primary school, so not Autism Qld.

He does cope well with mainstream kindy; well so I thought. I was over the moon with how it was all going. No tears at drop off, said he had a friend, learning and trying hard. I also thought the kindy teacher would say this too. Then she was quite firm on him doing it and it really surprised me. She knows him well. She knows the program well. I also really respect her as a teacher and as a person.

They told me today at playgroup that because the program is basically one-on-one, whatever goals we want him to achieve (be it fine motor, speech etc) he will have more chance of meeting them before school, so it will set him up for success. They will then hold meetings with his class teacher at primary school and share information about him. I really liked the idea of transition and it is something that I think he will need. Although, his kindy teacher could probably do this too, but it would probably be only one meeting versus several. It would also most likely hold less weight. I have noticed (I'm a teacher), whether rightly or wrongly, that if a child comes from ECDP into schooling that teachers seem to stop and listen more.

Everyone i speak to has a different idea. I would say that my OT isn't completely for it. His teacher is. My husband thinks it might help him catch up on skills such as counting and fine-motor. My parents are concerned about the various levels of the small class group. I do think it would have to be of similar level.

She didn't mention whether it was ABA based, which I deeply oppose. I would really be dead-against that.

Does anyone have any questions i should ask them?

I actually feel much more upset about this than I thought I ever would. I have cried a lot the past few days. I kind of got to the mental space of where we were going in our journey and has just begun to accept that and then this is thrown at me. I was just used to speech and OT and that felt like enough for a little 4 year old boy! We have had to miss swimming a fair bit this year just because he couldn't cope with more demands.

I just keep thinking he is 4....he will never get a childhood again. Do I really want him assessed more, prodded more? Taught more? I don't know. I am a teacher, so I know the journey ahead in primary school. I kind of feel like I want to slow down his childhood a bit more, decompress and just spend time with us. But that could be just me feeling sad.

I am mourning over the fact that over the last 4.5 years we have been to countless appointments. I was already feeling sad before this that I only have a year left with him, it feels like we have used up a lot of it at specialists/therapists and I really hate that. Although, I have fought hard to get a diagnosis and help though, so it seems wrong to now turn it away.

Thank you for listening.

Edited by blueskies12, 06 November 2019 - 08:47 PM.


#6 Paddlepop

Posted 06 November 2019 - 08:51 PM

Our dev. paed. recommended that DD go to an ECDP but I never got around to organising it. I kind of regret it and wish that I had. Parents of other SN children I've spoken to whose children went to the ECDP that DD would have gone to have spoken very highly of it and were very glad that their children went to it. It really helped to prepare their children (and themselves) for school, by giving them some practice in a more school-like environment than kindy and giving them some skills that were needed at school. I should have looked more into ECDP and made the effort to enrol DD in it.

Your OT is probably against it because they probably think that you'll drop appointments with them.

Are you in Brisbane? Which school will it be at? PM me if you'd prefer. I can tell you which school's ECDP is highly regarded by parents in my area of western Brisbane.

Absolutely not ABA based. Not in a state school.

Queensland has retained ECDP only due to strong lobbying of the government by parents and early childhood/early primary teachers.

#7 blimkybill

Posted 06 November 2019 - 08:55 PM

View Postblueskies12, on 06 November 2019 - 08:45 PM, said:

Great ideas, AsperHacker and blimkybill. Thank you so much for writing. I really am thankful, because you have both said what I have been thinking..

I am in Qld. It is state run- attached to a primary school, so not Autism Qld.

He does cope well with mainstream kindy; well so I thought. I was over the moon with how it was all going. No tears at drop off, said he had a friend, learning and trying hard. I also thought the kindy teacher would say this too. Then she was quite firm on him doing it and it really surprised me. She knows him well. She knows the program well. I also really respect her as a teacher and as a person.

They told me today at playgroup that because the program is basically one-on-one, whatever goals we want him to achieve (be it fine motor, speech etc) he will have more chance of meeting them before school, so it will set him up for success. They will then hold meetings with his class teacher at primary school and share information about him. I really liked the idea of transition and it is something that I think he will need. Although, his kindy teacher could probably do this too, but it would probably be only one meeting versus several. It would also most likely hold less weight. I have noticed (I'm a teacher), whether rightly or wrongly, that if a child comes from ECDP into schooling that teachers seem to stop and listen more.

Everyone i speak to has a different idea. I would say that my OT isn't completely for it. His teacher is. My husband thinks it might help him catch up on skills such as counting and fine-motor. My parents are concerned about the various levels of the small class group. I do think it would have to be of similar level.

She didn't mention whether it was ABA based, which I deeply oppose. I would really be dead-against that.

Does anyone have any questions i should ask them?

I actually feel much more upset about this than I thought I ever would. I have cried a lot the past few days. I kind of got to the mental space of where we were going in our journey and has just begun to accept that and then this is thrown at me. I was just used to speech and OT and that felt like enough for a little 4 year old boy! We have had to miss swimming a fair bit this year just because he couldn't cope with more demands.

I just keep thinking he is 4....he will never get a childhood again. Do I really want him assessed more, prodded more? Taught more? I don't know. I am a teacher, so I know the journey ahead in primary school. I kind of feel like I want to slow down his childhood a bit more, decompress and just spend time with us. But that could be just me feeling sad.

I am mourning over the fact that over the last 4.5 years we have been to countless appointments. I was already feeling sad before this that I only have a year left with him, it feels like we have used up a lot of it at specialists/therapists and I really hate that. Although, I have fought hard to get a diagnosis and help though, so it seems wrong to now turn it away.

Thank you for listening.
Oh it sounds like you have your answer there. It sounds like you would rather have the time with him - and that is completely valid.
Although I would be 99.5% sure the program is not ABA based at all, it's a small group modification of a kinder type program, so somewhat kinder like. (not that I have worked in Qld but have seen similar programs in my state).
Excessive appointments can be a problem. You know what's also valid? Cutting down your therapy frequency too. If that's what you want then do it. You are probably a great teacher for your child yourself, he probably learns great stuff in his time with you.
I would be wanting to know more from the kinder teacher though, why does she think he needs it? What can he not practise/do at kinder? What at Kinder is too much for him?

#8 crazy87

Posted 06 November 2019 - 08:56 PM

I'm in NSW and we have a similar state run program, and my son has done it this year before starting school next yr. It has helped him so so much. They do a lot more one on one activities than day care, so can focus on the areas that need improving. E.g. he couldn't write his name and didn't know the alphabet. In 6mths he is doing these things fluently and I haven't done any at home practice.

We also have a very full schedule, but thankfully the EI program doesn't run during school holidays so we get that break. We currently do 2 x half days EI group, 1 day swimming/OT/Speech,  2 days Day care. Yes it feels like he's always doing something but I feel it's all been worth it.

The NSW program is like gold too, i was extremely lucky to get a place (harassed them by phone weekly) - most other kids from his speech groups didn't get in. Ours is 2 teachers for 4-5 kids, runs for 2.5hrs 2 days a week.

I would just say, if his Kindy teacher is recommending it I probably would run with what she says. And if after a term it's not working, you can pull out and They give the place to the next kid down the list.

#9 I'mBeachedAs

Posted 06 November 2019 - 08:57 PM

There's absolutely no reason why you couldn't accept the position and then stop if you don't feel your boy is getting value out of it.

#10 blimkybill

Posted 06 November 2019 - 08:57 PM

View PostPaddlepop, on 06 November 2019 - 08:51 PM, said:



Your OT is probably against it because they probably think that you'll drop appointments with them.


I doubt this. OTs are in high demand and run off their feet pretty much all over the country at the moment.

#11 blueskies12

Posted 06 November 2019 - 09:00 PM

Thank you SelceLisbeth.  Your insight is so valuable. I am so sorry that it didn't work out. That's exactly what I am worried about- the extra loading and stress it would put on my son.

Paddlepop, thank you for your knowledge. I am in FNQ, but I am glad to hear that there has been great success with ECDP programs there. They would have to be run fairly similarly? I wonder if that's why the OT isn't for it. It's really hard to know. I do like how it is a real school environment.

On our SN social media group everyone seems to rave about ECDP. Although, I do have to look at my child individually.

I can't seem to seperate my own feelings from what's best for my son. He enjoyed playgroup today. He was really relaxed and settled, although that was with me there and his little brother.

#12 Paddlepop

Posted 06 November 2019 - 09:00 PM

View PostI, on 06 November 2019 - 08:57 PM, said:

There's absolutely no reason why you couldn't accept the position and then stop if you don't feel your boy is getting value out of it.

Exactly, and the place will be snapped up by someone else. Try it and see how he goes. Drop down some of the other therapies for at least the first term of ECDP until you know how he's coping with the demands of it eg fortnight OT instead of weekly; skip swimming lessons and just play together at the pool.

#13 AsperHacker

Posted 06 November 2019 - 09:01 PM

I think you need to trust yourself more. Stop second guessing yourself. It's ok make the choices that feel right for you and your family.

Most autistic kids don't need intense help for autism. The OT should be covering fine motor, the speechie should be covering speech, and he's happy at kindy. What more does he need? And is it just because he's autistic that people think he needs more?

The only things I would be concerned about is that other people seem to care a lot about the program and the transitioning. Transitioning is probably going to be important. But, you might be able to think outside the box for strategies to compensate. Is being able to advocate more because people respect the program worth what your family will miss out on by doing the program?

Early intervention can be awesome. But, it's not everything. It's not the end of the world if it doesn't happen. It might be a mistake to go with the program, it might be a mistake to not. But, it's not the difference between success and failure.

#14 Chaotic Pogo

Posted 06 November 2019 - 09:02 PM

i would not be worried that it is too much. My son coped with 20 hours a week of 1:1 therapy much younger than that.

My queries would be around their methodology, whether they are using an evidence based therapy, and if so which one. What are their qualifications, who is supervising the program, how they are measuring success etc.

There is old school ABA, and then there is the use of behavioural science within a child led program, which can still get called ABA. Eg ESDM includes some of the science taken from what they learned with ABA and in that sense includes an ABA component. BUT. They look very different.  One is very directive, like training a dog. Fetch Fido. It is often delivered sitting at a table. IMO it is not suitable, especially for younger kids.
The other is child led. The therapist gets down on the floor with the kid. The kid is playing with cars so the therapist plays. They try to engage by playing beside them, not telling them to ‘say blue car’.  They are extremely over the top fun and interactive without making big demands on the kid.  At first I found it frustrating because it ‘didn’t look’ like therapy but my son has made amazing progress.

I’d be asking for more info about the program and if possible to observe a session.

#15 Paddlepop

Posted 06 November 2019 - 09:08 PM

Some info about Qld ECDPs:
https://education.ql...ldhood-programs

#16 AsperHacker

Posted 06 November 2019 - 09:09 PM

View PostChaotic Pogo, on 06 November 2019 - 09:02 PM, said:

i would not be worried that it is too much. My son coped with 20 hours a week of 1:1 therapy much younger than that.

My queries would be around their methodology, whether they are using an evidence based therapy, and if so which one. What are their qualifications, who is supervising the program, how they are measuring success etc.

There is old school ABA, and then there is the use of behavioural science within a child led program, which can still get called ABA. Eg ESDM includes some of the science taken from what they learned with ABA and in that sense includes an ABA component. BUT. They look very different.  One is very directive, like training a dog. Fetch Fido. It is often delivered sitting at a table. IMO it is not suitable, especially for younger kids.
The other is child led. The therapist gets down on the floor with the kid. The kid is playing with cars so the therapist plays. They try to engage by playing beside them, not telling them to ‘say blue car’.  They are extremely over the top fun and interactive without making big demands on the kid.  At first I found it frustrating because it ‘didn’t look’ like therapy but my son has made amazing progress.

I’d be asking for more info about the program and if possible to observe a session.

ESDM is aba. Making aba pretty doesn't make it not aba.

Coping is not the goal. Coping with being trained to appear neurotypical is not indicative of someone being their best self. It's being what makes neurotypical people comfortable. It might be your goal, but it's a sickening goal to have for your child.

#17 blueskies12

Posted 06 November 2019 - 09:12 PM

Thank you so much for replying. I feel like I could hug you all. No one in the real world really wants to talk about this stuff.

Yes both the OT and ECDP have really long waiting lists.

Crazy87, that sounds exactly like this ECDP. I think he would likely pick up on writing his name faster and counting etc. I try with him at home, but I feel like I am on his back about every little thing, I can trigger him. Is your son coping with the schedule? Is he happy?

blimkybill, that is an excellent point. I think that's probably the crux of it. I haven't really talked to the teacher about where he sits in his kindy class. I had no idea that he needed more support. I think I need to talk to her about why she thinks it would be beneficial and what he can achieve out of it. I haven't wanted to have that frank conversation. It is time. This has prompted it. Apparently she is having a phone meeting with ECDP about my son on Friday, I would really like to be a fly on the wall.

#18 Future-self

Posted 06 November 2019 - 09:22 PM

Hi Blueskies,
We did ECDP  with DS.
It was one of the best  decisions we ever made for his 'early intervention' program.

It's not ABA or therapy or anything else dramatic - it's preschool/Kindy.  But Kindy shrunk down to a small class (DS had 5 or 6 kids) special ed teachers with an IEP. So it's Kindy to meet YOUR child where they're at and where they need special attention and help. It is seriously amazing. It's also only 9-2:30pm so not too onerous but is very high impact if that makes sense.
He did 2 years - started at 3 whilst doing 2 days at childcare and therapies then did the year before school whilst doing a 5 day kindy fortnight plus OT.



Happy to chat via PM if you'd like :)

I find the end of each year and the prepping for the next to be a period of feeling overwhelmed or sad sometimes for DS - all the extras in his life and the worries about the next stage etc. That's separate to the changes not being for the best, change is just hard!

Edited by Future-self, 06 November 2019 - 09:23 PM.


#19 Future-self

Posted 06 November 2019 - 09:25 PM

Oh and you can get the Special School's OT to work on his OT goals too so you can drop your private OT for a term to 'lighten the load' and see how he is going confidant that the School's OT and the Teachers are then still working on that area :)

#20 Chaotic Pogo

Posted 06 November 2019 - 09:28 PM

BS12,  to clarify,  my child coped with spending so much time 1:1 with various therapists.

Coping certainly was not the ‘goal’. Nor is making him NT.

Learning to speak and understand his environment and the people around him so he interact and be able to ask for help was the goal. So that his life would be a lot easier.

#21 blueskies12

Posted 06 November 2019 - 09:29 PM

AsperHacker, that's exactly how I feel. I feel my son has never been happier. He is the most relaxed that he has ever been. I don't want to send him there to try and change him. I want him to be himself. I don't want give him the message that he needs to change. I have accepted that he may be a little behind on speech, fine motor etc I just want him to be happy and relaxed in himself.

If we did it, I would need to cut back on something. I personally couldn't sustain it.

I do wonder if it because he has a label that everyone is for it.

As a family we will miss out on a lot. I generally get quite stressed when there is a lot on, but I realise that is my issue and not my son's. It is a 30 minute drive to it. It is also a 30 minute drive for OT/speech.

Looking up that link made me think- "significant educational support needs..."I guess that is my question to the kindy teacher. Does he have "significant educational support needs...?" I wasn't aware of it, but I am not teaching kindy, I only know him as my son.

#22 AsperHacker

Posted 06 November 2019 - 09:36 PM

View Postblueskies12, on 06 November 2019 - 09:29 PM, said:

AsperHacker, that's exactly how I feel. I feel my son has never been happier. He is the most relaxed that he has ever been. I don't want to send him there to try and change him. I want him to be himself. I don't want give him the message that he needs to change. I have accepted that he may be a little behind on speech, fine motor etc I just want him to be happy and relaxed in himself.

If we did it, I would need to cut back on something. I personally couldn't sustain it.

I do wonder if it because he has a label that everyone is for it.

As a family we will miss out on a lot. I generally get quite stressed when there is a lot on, but I realise that is my issue and not my son's. It is a 30 minute drive to it. It is also a 30 minute drive for OT/speech.

Looking up that link made me think- "significant educational support needs..."I guess that is my question to the kindy teacher. Does he have "significant educational support needs...?" I wasn't aware of it, but I am not teaching kindy, I only know him as my son.

Honestly, having read this thread, I would consider it. I have no experience with the program bar a quick google. It seems like it does have benefits for school transition and might be helpful for your son. Im not getting any indication that it's going to *change* him.

I'd definitely drop back on other stuff you go ahead. If the program helps with OT and speech then you won't need those appointments as regularly if at all. But, I absolutely be finding out what his teacher thinks he'll gain from it. If there's something specific she thinks he need then you should have that info to make your decision.

#23 Future-self

Posted 06 November 2019 - 09:36 PM

View PostChaotic Pogo, on 06 November 2019 - 09:02 PM, said:

I’d be asking for more info about the program and if possible to observe a session.
It's a classroom in a Special School, with Lunchtime and playtime and age appropriator curriculum designed to meet the IEPs of the children. So not a 'Program' or therapy. But the activities within the curriculum are designed to meet needs and be play based therapy if that makes sense.

It's really unique, and free and It's not for just children with Autism, it's for a range of diagnoses and disabilities. I really cannot recommend it highly enough for anyone in QLD offered a place.

#24 blueskies12

Posted 06 November 2019 - 09:38 PM

Please know I am really grateful for your help and advice to all posters. I actually really appreciate a robust discussion around everything special needs, because no one in my life will discuss any of this. Everyone just seems too scared to talk about it, or afraid to offend.

So everyone is welcome with any ideas that you have. I appreciate any support.


Future-Self, you are right. It is really hard to untangle my feelings about this, as I remember feeling really anxious this time last year with him starting kindy. It must be the time of the year and all the unknowns. So I must remember that I may be feeling 'extra' because of that too. I really hate change. I really hate change when I have just begun to accept our current routine and situation. Goodness knows how I will be when he goes to school. I'll probably need to seek help, as I am definitely feeling it more than others.
From what you are saying, this is exactly what it is like.

I will really miss him. I really struggle to let others be with him. I think I probably have trust issues and anxiety there.

I have felt so alone in dealing with all of this. I am having to apply for NDIS (we have been under HCWA funding) at the same time and it all seems too much at once.

I don't see my son having a disability. I think that is why it is so hard to walk into somewhere like this. I have avoided it for so long, people have suggested things like this and I have avoided it so have just stayed home. But then I realised that you know what: the other parents there probably also think that their child doesn't have a disability either, or are not defined by it, and that they just see them as their beautiful daughter/son too.

I think my next step will be making a meeting with his teacher.

Thank you all for writing. I haven't felt so supported for such a long time.

Edited by blueskies12, 06 November 2019 - 09:47 PM.


#25 Paddlepop

Posted 06 November 2019 - 09:41 PM

View PostFuture-self, on 06 November 2019 - 09:36 PM, said:

It's really unique, and free and It's not for just children with Autism, it's for a range of diagnoses and disabilities. I really cannot recommend it highly enough for anyone in QLD offered a place.

It's offered for six types of disability officially recognised by Education Queensland:

Quote

diagnosed or suspected disability in the categories of autism spectrum disorder (ASD), hearing impairment, intellectual disability, physical impairment, speech-language impairment and vision impairment.

(from the page I linked earlier)




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