3 yr old DS, HFA. PRT playgroup with no other DC or mainstream Montessori ?

[TrucksAndDinosaurs]

Hi,
After your thoughts really. DS was dx HFA aged 2.3 yrs in March this year. He's been attending a Playgroup run by SALT centre with SALT and PRT staff with a Montessori teacher - so basically a preschool for children with Autism or speech/communicate challenges, small group of 4-6 kids aged 2-4, high staff:DC ratio.

It's perfect and he's doing great there but is currently the only child! All others moved on to kindegarten or moved away.

DS is highly verbal but script-y and has eye contact/joint attention/social issues. So time with other DC is v important.

I do 2-3 play dates a week and take him to tumble tots and a soft play place. He's an only child. We live abroad and fund all this privately.
We also pay for an EDSM play therapy session at home once a week. And take DS to a SN toddler soccer group.

I just don't know what to do: the playgroup leader says they will carry on even with just one child and hopes a new batch will join too. But should I be putting DS with other children in a
Mainstream preschool eg: Montessori with neurotypical peers (but no additional support) or leave him where he is, with highly motivated, skilful adults playing with him beautifully, encouraging wonderful communication breakthroughs - but no other children?

What would you do?

Thanks /)

Why does it have to be one or the other - ds2 and ds3 had split placements and enjoyed the benefits of both types of setting. Really helped when we had to decide about schools

I do know where you're coming from wrt wanting to foster relationships with nt kids. My ds is also HFA, and as so much of his early behaviour was copied (still is to some extent) it is important that he can learn skills from copying his peers. Actually that's why we did ABA, to look at and address skill deficits in social interaction/communication compared to nt development, which has worked brilliantly, but still doesn't stop him being autistic.

I think, though, that zzzzz was possibly just reading some of your posts as slightly in denial (sorry, I really don't mean to sound harsh, just trying to explain how I read zzzz's posts). It is early days for you. I did feel the same when ds was about that age (he's 6 now), and because he could 'pass for normal' I didn't tell many people about his diagnosis, and had the usual life of playdates and cupcakes. It was actually hellish, as I was constantly aware of ds behaving diffferently, albeit subtly and possibly only I could see, but that increased my paranoia, as then I wondered whether the other parents could also see it but weren't saying anything....

When ds started school (mainstream) I decided to be completely open and upfront about his diagnosis. It was the best decision I made. He has made some real, genuine friends there, and the fact I can just talk, matter of factly, about his dx and any possible ways it might affect things, is an unbelievable weight off my shoulders. I am so, so proud of him, and damned if I'm going to pretend that he's anything other than who he is.

I do appreciate that it sounds rather different in the community you're in, but honestly I think the sooner you can just come out and be open about your ds the better - it creats a disproportionate amount of stress trying to brush off odd or unusual behaviours at playdates while dying inside!

And fwiw (after this loooong essay!) I think in your position I'd stick to the current nursery but hope that other children join it! Early intervention and support is so crucial, and if he is thrust into a ms nursery with no expert support at this stage could really be detrimental to his development. It's great to be around nt kids, but without someone there (ie expert adult) to help teach ds how to join in etc, it won't make any difference - the fact is that if he could just learn and copy and pick things up by osmosis like nt kids do, he wouldn't have autism. My ds was at a lovely nursery for over a year (pre- and during dx) but did nothing every day but roll on the floor and play with sand. When ABA tutors started going in with him, within 2 weeks he was joining in and playing with other kids for the first time ever. Just try and get as many playdates/social situations with other kids as you can.

Thanks for replies.
They are appreciated.
I don't think I am in denial; I am the one who pushed to see the paediatrician after I did the mchat, got the referral, got the dx, started the ESDM therapy, did the Hanen course, read the books and this board, found the PRT/salt preschool...

What I am is unsure, unsupported and ignorant as to what the future will bring and what DS needs. I can only work with where he is now; I don't know what he will need or be like at 6/16/26 years of age.

What I'm being told is he has great language and solo play skills but is delayed socially and needs extra help but also exposure to other kids. So ok, that's where we are: he does preschool alone in mornings with PRT techniques and trained SALT setting goals and working with him. He is doing ASD toddler soccer and I do 2-3 play dates with neighbours with same age DC (nt) plus tumble tots.

I'm aware that's always with a parent or special teacher present and he's not exposed to nt kids in groups/doesn't have playtime or much opportunity to watch kids playing freely. So I'm looking at the Montesorri place he should have started in Sept and thinking: could he cope? Would it be right for him?

I don't want to start DS life here with him publicly labelled. I don't want to tell strangers and classmates parents yet. Of course those who need to know will/do know. I think it's unfair to paint me as intending to force DS to live a lie of a life or that I am in denial or ashamed. I simply want to give him every chance to find friends and play and fit in, rather than assume he must be with the SN kids only and not try mainstream.

When there were other kids at the special preschool DS looked far more typical than they, as he does at soccer now.

He needs to try but should he wait another year? That is my dilemma. Early intervention is v important, I totally buy that.
What is more important? The intervention or the exposure to playing kids right now?

As to the future, how do I know? I just don't.
DS is not like the kids in Hanen videos, not like the kids in autism books, not like the kids at special playgroup. I am not being head in sand. I genuinely don't recognise much of what I've read/seen about autism in him, yet we have the dx. So it is there, but presenting as 'mild'.

At the moment I think he should stay where he is but I need to visit Montessori places and talk frankly to staff there about whether he'd do well or not and what they could:cannot do.

I don't want him to go backwards and lose his skills and emerging social stuff.

I don't want to screw up his future if in a year he could just slot in.

Most of all I don't want to let him down.

We have no actual friends here as we started from ground zero in v difficult circumstances. I don't have access to people to confide in or lean on and have not been a parent before so no frame of reference or experience. We are at the start of a journey and its much harder here than it would be at home because of having to be so guarded about what you tell people in small expat community.

Anyway, thanks for listening because talking here has helped.

The trouble is that typical development is hyperbolic. It isn't a straight line, gradual incline. As your ds learns one skill now, his peers may be learning 3 skills. Later, the complexity of social interaction outstrips the abilities of children who are weak in social interaction.

My Dd2 who is 6 is really struggling, and we don't even have a dx for her yet. She has drifted to playing with boys because they are less complicated, but soon they too will be beyond her reach.

Is there the opportunity to do part of each setting? Without support, though, my hunch is that your DS will be simply sharing air space with the NT children (as my dd2 ergo isn't even diagnosed yet, did).

By the way, my dd1 goes to special school and she seems 'less severe' and 'more nt' than many of her peers. Putting her alongside nt children marks her out like a sore thumb -more than any label.

someone in your community needs to start the process of destigmatising SN -why not you?

I would send him to the preschool with excellent input and no other kids and arrange something else so he can also play with other children.

"I would like him to at least have a fucking chance to have nt friends." not the most sensitive post to parents of children with SN.

Don't also reject help because he "looks typical" ..my DD looked quite NT at 3.

You do have my sympathy anyway as we have all felt like you do. I totally agree with zzzz abiut the denial thing. It's hard.

Sorry..bialystock mentioned the word denial..I agree..and meaning it kindly.

We just don't want you to waste opportunity for early intervention by thinking he is typical (like I did with DD tbh)

(Sorry..I am ill so rambling a bit)

DD1 looked fairly typical at 3, too, Fanjo. Funny how they change as other children grow up and yours is on slow motion

I know..it's hard :(

OP I'm sorry if my comment seemed clumsy - I didn't mean to suggest you are in denial about his diagnosis, you're clearly not, and clearly doing everything you can to give him the best intervention you can find.

I meant, I suppose, that having playdates, joining in mainstream nursery stuff can be harder if you're pretending that ds doesn't have asd. Not saying you need to walk around with a placard announcing the fact, and in my case I only told people who I got to know quite well first, and thought would take it in the right way (ie not look horrified, not be too nosy, not start going on about their friend's nephew who also has it and is fine/worse, not back away, etc). Now, 3 years on, I am more upfront about it generally, but even so there are many parents at his school who don't know (or at least, I haven't told them!).

But the fact is that if anyone looks at ds and thinks his behaviour/interaction/play is odd or something, they'll think that anyway, whether or not you tell them the actual reason. Many people won't notice any difference (they didn't with my ds) but I was always on the alert for any strange behaviour from him and it made me anxious and paranoid in case they noticed anything. Whereas if I told people really casually and matter-of-factly that he has HFA I felt it gave them no excuses whatsoever to be judgemental or shocked by anything unusual he did.

Maybe there's no need for you to do so, but you mentioned your worries that other parents would shun you if they knew about his dx - I'm just trying to say that if anyone did shun you (which I really hope wouldn't happen) it might be because of ds's behaviour, not his diagnosis - he is the same person with or without his dx, so if the other mums really are so shallow and idiotic as to dismiss his/your company simply on the basis of his diagnosis, without even knowing him, bloody hell, you're better off without them.

I totally agree it's important to have as much exposure to nt kids as possible, and wasn't saying for a second that I thought you should only mix with other sn families/kids.

Hope this makes sense, sorry for such a long post.

Sorry if mine did too. My brain is mush.

I just saw.word denial then remembered how I was back then.

But you are streets ahead of where I was then in thinking about it which is all good.

We.missed a few chances to help DD.

I think splitting half the week sounds ideal really if that was a possibility?

My son was diagnosed with aspergers last year - when I finally agreed to the diagnosis.

I had been resistant since he was first referred in at 2 yo by a health visitor. I convinced the consultant it was unnecessary. But school then referred him back in when he was 4.
He is very chatty and academic, but the differences between him and NT children are really widening. He is starting to not be invited to the birthday parties although he isn't at all aggressive.

So I do see zzzzz's point. You do come across a little in denial - but thankfully not at all on the same level I was.

What you call denial is not denial
It is simply inexperience - you are further down the line to me with older children. DS was dx aged 2.3 and 9 months have passed - during which time he's started SN preschool, we've done Hanen, started EDSM therapy and OT and SALT. I did all that, found out about it and set it up and I was the one who pushed for the dx.

Denial would be if I was resisting help and pretending DS was nt. I am not.

I am sorry but I have been feeling very upset and angry about being told I'm in denial. I can't see what more I could possibly be doing. I keep waking up at night in tears over this thread. All I want is to hold out hope that DS can learn to play with other children and have friends as he grows. I refuse to deny that hope, that chance. If that is denial then all parenting is denial?

I don't want to burn bridges here because this board is my only lifeline but please don't say I am in denial simply because I only have experience of my own 2 year old and he's not started school yet. Please don't call my hopes for him denial. It's devastating. I have to believe and hope, I can't do this without hope.

I am told/reading that DS needs to practice play and social skills with other children.

That is what I am trying to orchestrate.
I am going to keep him where he is for now.
I have no idea how to go about hiring a 1:1 to attend school with him, or if the school would accept it, or how we could afford it - sn preschool is 1500 dollars a month. EDSM is 900 dollars a month (1 session a week) Add in Montessori as well that's another 1000 dollars a term. OT craft and nature classes 20 dollars a session in afternoons so 40 dollars a week.

If you don't attend full time you still have to pay full fees.

A 1:1 trained assistant would have to be flown in from USA or UK or Canada by us and salaried and we would have to pay for a work permit.

In order to attend Montessori a few days a week.
It's just not feasible. There are no grants, no help for us.
I could be the 1:1 person - I don't have a job here- looking after DS is my job- but I doubt the school would accept a parent there in that role and I don't think it's appropriate anyway for the 1:1 to be me. I look after him all the time apart from 9-12 at sn preschool.

I don't think the montessori preschool want him anyway. I rang and they said they might be full in the new year, even though DS had a place from 8 months old. Why make an effort for DS when they can have nt kids and no extra hassle? And that's the attitude here: people are buying private education for their kids and schools want to keep the buyers happy.

Being angry at us and guilt tripping us by saying we are not allowing you hope for your son is not very nice when we are trying to help using benefit of our experience. This time does suck. But not because of us

We all have the same hopes for our kids all the time.

I'm not saying you can't hope. I'm saying that putting your ds in a ms environment with NT children and no support will not develop his sociall skills. he won't learn by osmosis. My dd who has no diagnosis yet was at preschool and all our photos in her learning journal are of her on her own. She just didn't have it in her to desire to be with other children.

Hi Truck, hang in there and sorry you're having a hard time. I am VERY new to this board and have expressed myself clumsily on here before. On my thread in SN chat I wondered whether DD really has ASD or if I've just parented really badly - which I can see now is bloody offensive to parents of SN children, but I have felt so responsible for her difficulties and its easier to blame myself somehow.

For what its worth my DD is just 4 yrs and starting the long journey to diagnosis for ASD. She goes to a Montessori nursery and is doing pretty well. They recognised her difficulties and suggested ASD to us, they are not specially trained but have helped her to begin to manage being with peers and have helped her with her fine motor skills. They have been really excellent and DD finds the other children fascinating - she doesn't play with them as such - but enjoys observing them . I guess all Montessori's are different - but our experience so far has been good.

Oh crikey.

Truck again I'm sorry if my use of the word 'denial' was inappropriate, I've tried to explain what I meant by it, which wasn't that you were 'in denial' about his dx. I was responding more to your comments about not wanting to mark him out as different, being publicly labelled etc.

Will try and explain again: if he doesn't have the support he needs in a ms nursery because you don't want him to be marked out is not doing him any favours. And honestly, the other kids won't notice (my ds is 6yo, in Y2 in ms school with TA and really none of the other kids have noticed that she's there for him, they just think she's another classroom assistant). If any of the parents run in horror, screw em (easier said than done I know - but that's why in my first post I tried to share my experience of life while 'hiding' his dx).

You're right, many of us who have responded to your OP are further down the line from you. But I thought that sharing my experience with you would help. Isn't that why we post here, to get experience and advice from others who've been in similar situations?

All I want is to hold out hope that DS can learn to play with other children and have friends as he grows.

We all of us here, every single one of us, have the same high hopes for our dc. Which is why we all do everything we possibly can to fulfil them. That is exactly why we did ABA with ds (at huge cost but we managed it).

You asked what we thought you should do. I (and it seems like others) have said that, with some hindsight, the best way of achieving the best outcome for children with asd is as much intervention and support as possible from the youngest age possible. In your situation (and I've been in similar) that means to me that putting your ds into a nursery alongside nt children is only likely to benefit him if he has proper support to help him make sense of it, to participate, and to interact. My ds is also HFA, I also felt that being alongside nt peers was the most beneficial thing for him, but without someone expert supporting him he might as well have been in a bubble.

The very nature of ASD means impairments in communication/interaction - there are skill deficits there and you need someone expert to teach him those skills. It sounds like your current nursery are doing amazing things for him and I was just saying imo I would keep him there. I get that it's a really hard situation as of course the ideal would be his existing nursery with great support and other kids, which currently isn't happening, but I would hold out for that.

I don't know how the ESDM works but can you get playdates as part of that? Nothing better than practising playing with other kids with an expert there to teach.

Have you looked into ABA? Might be worth it... Which country are you in?

And zzzz I am really sorry for putting words into your mouth, especially as they were the wrong words . Really sorry.

" I genuinely don't recognise much of what I've read/seen about autism in him, yet we have the dx. So it is there, but presenting as 'mild'."

Hi trucks, this struck a bit of a chord with me as we are in a similar position. Our DS is coming up to 3.5 years and has dual diagnoses of verbal dyspraxia and ASD. As he's got older we have been questioning the ASD diagnosis, noting that may sound like we are in denial! It's just we wonder whether the ASD characteristics are driven by the inability to communicate verbally. Maybe he has developed better coping strategies (or maybe we are better at meeting his needs) but he shows a lot less of the characteristics he did 6 months ago. Anyway we have adopted some ASD strategies such as using visuals to prepare him for change and that seems to help. To be honest we don't mind whether he has ASD, just want him to get the support he needs.

our experience of a MS nursery has been mixed. Previously he hasn't seemed that happy there but since he moved rooms in sept, he seems to love it. I think it is mainly due to having a new key worker who is making loads of effort to include him. He doesnt have any official extra support at the moment but i think the staff do spend more time with him tahn they do with other kids. Although he seems happy there he doesn't have any friends and needs support to join in with a lot of the activities. the nursery report he seems to want to join in and play with the others, he just doesn't know how.

Moving nurseries would be risky, i guess I would consider the attitude of the prospective new nursery. If they are happy to try to help your DS then might be worth a go. They need to try and understand your DS and work out ways to include him. If they dont seem willing to do this and he's happy where he is, might be best to stay. Lots of play-dates and activities with other kids, both NT and SN, will be helping him I'm sure.

Finally are you sure people in the community you live are so anti SNs? That sounds v sad. While my friends have all responded in different ways to DS diagnoses, most are very kind and supportive to DS, encouraging their children to behave in the same way. I would find it a real strain keeping such a big thing to myself.

Good luck, I know how it feels to agonise over whether you are doing the best for your DC.

Hi again and sorry for getting upset and reacting badly; it is upsetting and nerve wracking trying to decide what to do to help DS learn to play with other DC as opposed to adults but I really appreciate everyone taking time to offer thoughts.

I'm going to leave him where he is as the only child in the SN preschool and hope they can keep going and other DC join. I don't know what the future holds but DS turns 3 thus week and has benefitted from 6 months of privately funded early intervention and we can afford another 6 - 9 months if we are very careful, don't go on holiday etc.

He's getting 3 hours in the PRT and SALT playgroup Mon to Fri daily, so 15 hours, plus another 90 min EDSM session, and in the afternoons he hangs out with me, I host play dates or visit neighbours, go walking, so the beach or park or supermarket/housework and probably watch too much Thomas and Peppa DVDs (no tv).

It's becoming more obvious that he's not NT and I will have to grow a thicker skin. It's a pisser we left our support network in UK but never mind. I hope we find accepting people to socialise with as time passes.

He scripts loads at the moment especially when tired. Play dates happen late afternoon as most DC his age nap after lunch and it's not his best time: he's tired by then, hasn't napped and is at his most autistic - least social - most scripty - least eye contact - most stims- etc.

I hope that in 9 months he can start kindegarten: as well as Montessori kindegarten here there is also a special school and a hybrid special school for HFA, dyslexic and gifted kids where they can start from 4. Small classes, use smart boards, lots of exercise breaks, use PLIESE and SALT and mental health counsellors etc. It's all private here - you pay, you can access good stuff. Schools are businesses serving paying customers. Nt schools have no obligation to see or help you, specialist schools will work to serve their paying parents. So the nt/special needs divide is marked. Kids like DS who could be borderline are hard to slot. It's hard, and he's still very young so I don't know what the future holds.

Anyway, thank you all again. I do appreciate it.