Special or Mainstream - so confused!!

[user1492716806]

Desperate for some advice as i'm so conflicted about what would best suit my 3.5 year old with ASD, GDD and SPD.

He is not really verbal - can't string a sentence together. Can only label and repeat words. No functional language. He knows his alphabet, numbers up to 30, colours and shapes - but what good is that if you can't communicate your needs or not toilet trained yet. He really can't learn anything unless its hand-over-hand. Nothing is instinctual for him. His receptive language is also quite basic. He still can't get 2 or 3 step instructions?

In theory i would love for him to go to a mainstream school. It's a mainstream world out there so why shouldn't the LA provide everything he needs in a mainstream school? 1 to 1 with a qualified ABA TA and a multi-sensory environment. Is that too much to ask? My fear is that the TA's employed by the school will just be glorified baby sitters who won't teach him anything educational but will just make sure he hasn't wet himself or is unhappy. What about learning? Learning to talk, read, write? Can he really and truly get that in a mainstream setting?These are the critical years of his development and the one chance we have to set the seeds for his future.

Conversely my fears about special schools are that they might only focus on life-skills (which I can try and do at home with him) and not embrace any academia or push him to engage in the national curriculum. I also feel like its the first step to institutionalization him? Am I wrong to think that as well? I feel so awful for even thinking it :(

His EHCP will be drafted in a few weeks and I am non the wiser as to what I want. My gut instinct tells me has potential to learn and catch up but that he has specialist needs and needs specialist help but I believe he will only benefit from intensive 1:1. He won't learn in a group setting which most special schools offer. I know him - he will just wander off and stim alone as his focus and attention are so poor. Does anyone have any words of advice?

1. I've been to see an ASD unit in a mainstream school (should be ideal in theory) but it's a class of 8 (2 teachers) and a ratio of 1 adult to 3 children. 3 kids were at a table with an adult but the others were mostly mucking about in the corner as a free play with another adult overlooking?

1. I've been to see an Academy mainstream. Really liked the school and the vibe seemed right with only 2 Reception classes (of 30 kids) but the SENCO wasn't around for the tour so didn't get much feedback. When i spoke to her on the phone she seemed helpful enough but then mentioned that their Reception classes are 'not like most primaries and the lessons are very structured.' In my head i'm thnking this sounds right for my son as structure is what he needs but then I get the feeling she was saying he might not cope?

She has since gone AWOL when I wrote an email saying i was concerned about his sensory issues and whether they would be prepared to help find the right TA if I choose their school?

1. I'm off to see TreeHouse School (1:1 ABA) and Manor School (Brent - where I live) They also use some ABA strategies but again learning is in groups?

I'm really lost and confused :(

[EggysMom]

This may sound harsh but if you believe your child can progress in a mainstream environment with good 1:1 support, then please express that as your preference. Places at SEN schools are incredibly rare, and better kept for children for whom mainstream simply isn't an option.

(That "mucking about in the corner" and "wander off and stim alone" is pretty much all my son is capable of, with his level of intellectual disability. I'll be happy if he comes out of school able to dress and feed himself, anything else is a bonus.)

[user1492716806]

Hi EggysMom - no you don't sound harsh at all. In fact its really helpful to get another perspective. I also have the same concerns regarding intellectual ability etc. A year ago I would have said the same thing about him coming out of school and dressing and feeding himself. My son still can't use a knife or fork and still drinks out of bottles?? He can just about eat with a spoon. He doesn't know how to suck from a straw but can sometimes drink with monitoring from an open cup. You see what I mean? There are days when I think he won't be able to be a fully functional member of society (which is what I wanted first and foremost) and days when I think maybe he can actually be pushed into learning but only in the right environment from people who know what they are doing and dealing with i.e. specialists which leaves me thinking special schools once again.

[januaryblues21]

My HFA ds8 has been in mainstream so far in an 'inclusive school'. What I've seen so far is that mainstream schools are for 'mainstream kids' (who ever the hell decides who fits that title is beyond me) and they can manage a degree of flexibility in terms of the space, setting and approach so they open the doors to SEN children and proclaim they are inclusive but only if your child can adapt to fit in and if they can't, you're shown the door and are told - 'we'll what do you expect, we're only a mainstream school'. That's not inclusion. But it's how it is set up in this country.

Ds needs a lot of input and is quite complex although he's highly intelligent, verbal and social but he doesn't get what he needs in MS and he is excluded, isolated, berated, punished and ostracised. He's overloaded by the sensory environment, he's anxious about what he doesn't understand and he just doesn't feel accepted. These people just don't get autism and ds feels like it's him that's wrong and it's not. He's been out of FT education for months and without a school currently. It's gone badly wrong.

[Sirzy]

Just be warned make sure the ehc is very specific. Getting full time 1-1 named can be very difficult though.

Ds is in year 4 at mainstream. I have fought and we now have full time 1-1 so he is doing well. We know he won’t cope with mainstream secondary so are about to tackle that bridge.

What you described about teacher working with small group while the rest had free play sounds quite like the set up in most mainstream primary school reception classes

[betterwithasetter1]

I think you're right to visit all of these schools before making a decision. My DS (12) with ASD was at a mainstream school with full time 1:1 for primary and is now at a specialist setting (one that offers GCSEs and A levels with extra support). I also have experience as a 1:1 TA for a child with ASD and as a classroom TA.

DS is bright and sociable but he began to feel "different" from his peers and didn't like having more support than they did. He told me he just wanted to be "normal", which broke my heart because of course there's absolutely nothing "wrong" with him. I'm sorry if this next part sounds harsh. You say your son lacks functional language and has SPD - this will make a mainstream classroom challenging for him, even with a 1:1 TA. Reception classes can be very noisy, and he would also have to cope with the school dining hall and playground etc. He's only 3.5 now - so there's plenty of time yet - but a mainstream school would probably require him to be toilet trained.

Time in a specialist environment does not necessarily mean that a child will be in that kind of setting throughout their schooling. I have friends with children who started in ASD units and then built up their time in a mainstream classroom.

Feel free to pm me if I can help further.

[grasspigeons]

there is a very good specialist school near me and the head there said to me that children who come to them from the start can and do transition to mainstream schools but children who move out of mainstream after a few years where they haven't really had the right support don't tend to transition back to mainstream. I suppose it makes sense to throw all the support possible at a young child and for them to grow to not need it. its never to late but getting all those coping skills and language skills is so important.

[user1492716806]

“I suppose it makes sense to throw all the support possible at a young child and for them to grow to not need it. “

This is what I feel. He needs all the help he can get tbh. But having seen the independent special school I saw yesterday I don’t feel that particular school was the place for him. I’m going to see a state specialist school tomorrow and hope that fares better. I came away quite dissapointed in what I saw. They cater to children up to secondary age. The autism was on the extreme end and some were openly aggressive as I came in. There wasnt much in the way of learning, the younger children were either in distress and being consoled by a TA, others were picking things up from the floor and eating it. My heart really broke :(

Also for a very well known specialist place with expensive placement fees, I was pretty disappointed with the facilities. No sensory room with different lights and colours - they just about cobbled together some foam mats in a small room. They mostly had tiny white painted rooms for children to lock themselves in and “let off steam”. It felt like an institutional horror to be frank :( The staff were lovely and very accommodating but I just instinctively got the feel that this was not the place to educate or nurture my son.

By contrast I went to see a mainstream primary school today and the SENCo and reception class teacher openly embraced me and my son. They told me about the high number of autistic children attending their school- the teacher herself is a mother of an autistic child. They seemed to know what they were talking about and I felt relaxed in their company. They didn’t seem to think of his autism as a problem and looked at him as a child capable of learning by adapting to his needs. I got such a good vibe and I really wasn’t expecting much. The touch of humanity really shone through. I think I’m more likely to try mainstream based on this and see how he gets on if I can push him as much as I can at home and hoping he has his own developmental spurt?

[Thekidsarefightingagain]

Sorry, not read the whole thread but he sounds just like my son was (turned out to be ASD with an Aspergers presentation, dyslexia, dyspraxia, speech & language difficulties). Mainstream has been a bit of a nightmare so far but he didn't have the support in place. We're in the process of getting him an EHCP (he needed one years ago). Eventually we'll fight for a specialist school.

[Sorcs]

I’m in a similar predicament at the moment also & am desperate for some advice around mainstream or mainstream with a unit.

Sorry to hijack your post op! My DS has Hf ASD & ADHD & is currently in a very small independent school with a full time 1-1 & ehcp but going forward they can’t meet his needs. So we have to move him out & are looking at state mainstreams. I’m wondering if a mainstream with a unit would be better for him so he gets the best of both worlds?
Would that be something that could work for ur DS OP?

I’m worried though that they could end up getting left in the unit & not get included in the mainstream at all especially if the staff don’t understand our kids as well as they would do in a special school.

It’s such a hard decision to make especially when no one can tell you what is right for ur child. I’m thinking if we do go for a mainstream it’s s risk we’ll have to take to see if our DS can cope, if not then we’ll just have to move him again!

Good luck OP I know what you are going through!

[grasspigeons]

Its a tough decision. That special school with the white rooms sounds awful. I think you are probably right that the individual head and senco and their willingness to work with you will have a big impact.

[April2020mom]

I’ve also been thinking about this lately. There are no special needs schools in my area. The closest one is in Guildford. Honestly I think that my son and daughter can do quite well in mainstream school.
However my son’s language skills are on track along with his cognitive skills. My daughter similarly does not seem to have any cognitive impairments that would make me change my mind.
Autism is a tricky diagnosis. This website may also help you decide- www.specialneedsuk.org/findaschool.asp
I found it useful when narrowing down my list of schools.

[januaryblues21]

Autism is indeed a funny diagnosis to predict the setting. My ds started school with no developmental issues at all. We had no inkling there was any autism there at all and there aren't any learning needs. By 8 he had a diagnosis and can't function in mainstream.

The tricky thing is with autism that it's the environment that dictates so much and that's the thing that a mainstream class can't change - it will almost always have 30 children, be noisy, smelly, visually stimulating, with loads of transitions, lots of complex social interactions etc and an autistic child either has to cope or they can't, there's not much about that that can be changed. When they can't cope they may end up withdrawing into themselves or exploding out. Schools are moving away from 1:1 support as a model because what an EHCP says a child needs won't always be magically achieved just by having a TA attached to their side day in day out - it's so much more than that and schools have limited resources now which can make you feel a burden.

It's also worth thinking about how a lot of schools are off rolling kids with SN. Not so much in key stage 1 but think about their whole school career. Schools are full of really lovely people who are desperate to help children with SN but it's out of their power to actually do what should be done because they don't make the decisions or hold the purse strings.

I'm sure there loads of similar concerns with SS though. I've just never been in one yet!

[KateGrey]

I have two dds with autism. One (9) and is in mainstream and the other (5) did one horrible year in mainstream and is now in specialist.

We wanted to try a mainstream with our youngest especially. Eldest wasn’t the right fit for a specialist. My youngest sounds a lot like your son but she was toilet trained. Mainstreams aren’t hugely flexible in my experience (youngest was in an academy and we ended up at a court for disability discrimination). Youngest could label words but communication is poor. In theory a 1:1 which she had full time should’ve helped her but it didn’t. Special schools look so different and it is a mental adjustment as they teach in different ways. I asked the team around us who worked with our dd about where they thought she’d be best placed and it was a 50/50 but felt she deserved a try in mainstream. I can’t honestly say it was the worst year of our lives. Our dd was isolated, excluded and treated so badly. It worked for our older child but not for our youngest.

What you are asking for is a very specialist TA. Most aren’t and a lot don’t have a huge understanding. I spoke to a head of one special school who had kids she said would move back into mainstream. Mainstream is so rigid and there isn’t a lot of flexibility. We are considering a specialist setting for my eldest for secondary. Mentally it was a bit hard to except that my dd needed a specialist provision but her school are brilliant it isn’t purely life skills but an all round approach.

Good luck and do pm me if you’d like to chat.

[user1492716806]

Sorcs - i think a unit in theory sounds great. I went to see one last week and thought it fit the bill. It wasn't like i imagined - the units were in actual fact separate classrooms in the same building. Small class sizes, a lot of visual timetables, clear IEPs for each child on the wall. My son loved their outdoor area as well. But i didn't get the feeling that the SENCo was that receptive to my son. She commented on his toe-walking and other issues and said that he has '8 months to make progress.' Not sure what she was getting at tbh. But i liked the idea of them doing their core lessons in the unit and integrating with their mainstream peers during non-core sessions like music, spanish, PE etc. I had concerns about whether they really 'bother' to integrate the pupils and not just leave them to themselves in the unit but it seems genuinely they do try and mix them in. The primary itself is also rated Outstanding, it's just a bit of a nightmare to travel there despite it being local. So more food for thought.

Yesterday I also came back from seeing a lovely specialist place - 4 miles out so he would have to get the school bus, but it seemed really perfect. Just felt like any other primary school. I felt like my boy wouldn't be out of place and all his needs would be met. Facilities were great as well - indoor heated swimming pool which they attend once a week. They say they also follow the national curriculum but loosely and through play. Some children have option of sititng SATs etc. They also have life-classes learning to do laundry, cook, make their beds etc. Functional skills. In reality school seems like a no brainer but family members, including dad, saying if their is a perfect mainstream school just down the road from us why should he not try that first. His dad has worked as a SEN LSA before and has worked at some special schools and he's convinced mainstream is the way to go. Not sure he right and I have to convince him to at least see the school before coming to any conclusions but he's hard to convince :(. He also says transportation arranged by the LA sounds great on paper but it's a kerfuffle for the kids waiting on each other etc and why should our son have to go through that faff when he can just walk to the mainstream option? I don't agree with that but we will see.

At least I have 3 options - a nice unit, a lovely inclusive mainstream and a brilliant special. Even more confusion?

[user1492716806]

Hi januaryblues and KateGrey - just read your comments now. I really feel now the special school is the best one for him. This is exactly my conundrum with mainstream. The transitions, complex social interactions and noise etc. It's actually unfair to ask an autistic child to 'deal with that' just to see if they can cope :(

And yes what would be my ideal is a specialist TA but like you say that's not the reality. And TA's come and go as well so even if you find one that's great they won't always stay. I'm also aware that EHCP's don't actually state 1:1 anymore. It's just a pot of money for the school to do as they like and we would have to hope they would find a TA as part of that package but its pretty much the discretion of the school to do as they like for him with the funds given.

Special schools are hard to get your head around - one i saw actually traumatised me. Yet the one I saw yesterday was completely different and I felt my son would fit the picture.

My only struggle is to convince his father to see the special school. And he's hard going! He tells me before i start worrying about academic achievements (i.e. our son learning to read and write) I should be looking at his ability to pay attention, listen to what the teacher is saying, and sit down for more than 5 mins which he struggles with. He says that in itself would be a significant achievement for our child and that he can learn that best in mainstream because it requires more discipline. He says he doesn't need a specialist TA, just someone kind and willing to embrace him. Does that sound right as well? Grrrrr!!!!!

[KateGrey]

Did you see any of the children at each setting? As that can sometimes give you an idea of whether they’d fit in. From my experience dd’s dad found it tough to think of her in a specialist school because that path seemed scary. It was easy to think she’d conform and that everything would be okay. Meeting the senco like you have gives a good guide. Also their Sen policies and Sen information report. Ours went up last year and it was awful and smacks of being uninclusive for our mainstream school. You know your son. Specialist places aren’t easy to come by.

[januaryblues21]

Disciplined and ordered can work both ways though. It can cause significant anxiety in autistic children which makes their difficulties seem worse. Ds appears NT at home but in a classroom I barely recognise him.

[KateGrey]

@januaryblues21 my eldest dd is the same. Much more tense and nervous.

[DallasCounty23]

@januaryblues21

My HFA ds8 has been in mainstream so far in an 'inclusive school'. What I've seen so far is that mainstream schools are for 'mainstream kids' (who ever the hell decides who fits that title is beyond me) and they can manage a degree of flexibility in terms of the space, setting and approach so they open the doors to SEN children and proclaim they are inclusive but only if your child can adapt to fit in and if they can't, you're shown the door and are told - 'we'll what do you expect, we're only a mainstream school'. That's not inclusion. But it's how it is set up in this country.

Ds needs a lot of input and is quite complex although he's highly intelligent, verbal and social but he doesn't get what he needs in MS and he is excluded, isolated, berated, punished and ostracised. He's overloaded by the sensory environment, he's anxious about what he doesn't understand and he just doesn't feel accepted. These people just don't get autism and ds feels like it's him that's wrong and it's not. He's been out of FT education for months and without a school currently. It's gone badly wrong.

I know this is a very old thread and you may not be around but on the off chance you are.. What was the outcome for your little boy? He sounds exactly like my da who is almost six, in Primary 1 (NI) and struggling. We've been told he can stay in mainstream with a 1:1 but I don't believe it'll make a difference. I'm just so worried and struggling with what to do.