DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Sorry - to explain my heading a bit - feeling overwhelmed because although I knew he was behind I didn’t realise it was to this extent

Hi,

I just wanted to say try not to panic (I know that's really easy to say). My DS is starting reception next year too. He is late summer born so we deferred his start to school (he's 4). In the last 6 months he has suddenly pushed on, having had similarly worrying developmental age scores. I'm telling myself that we have lots of time to do as much as possible before September. That calms me down. I'm sure someone will be along to explain how their little one coped. I found that being that little bit older lots of things that he had really struggled with suddenly clicked for my DS and his level of understanding improved. There is stilll lots to do but it's amazing to see the change. Your DS is younger and I'm sure you'll see a similar leap as he moves towards 4.

Hi Seeking, thanks so much for your reply. It means a lot. Yes there is a while until September and that is something. I think I struggle sometimes with the not knowing how things will pan out. Is there anything particularly which you think has helped your son? I am glad his development is coming on. Have you chosen a school for him yet?

LA assessments do paint the blackest pictures, but they have to. A lot of my dds reports for ehcp are hard to read, but I do now see them as a means to getting the support needed.

DS is a summer born isn’t he?
Like op said I’d add deferring to your list of options.

My summer born started school before deferring for summer borns was an option, she’s a few years older now, but looking back, she simply wasn’t ready to start school when she did, irrespective of which setting we chose.

Whilst it is still a long time until September, An extra year before starting school can buy you a lot of development time.

My pleasure, glad it's helped a little. The not knowing is horrible isn't it, and causes so much worry. I didn't mean it to sound like I'm not constantly worried too, but if I try to have some sort of plan (however small) it helps to manage the worry. So I'm thinking about things he may need to be able to do in school and trying to make small inroads into those things, self care especially.

For us, finding a way to join him in the things he really, really loves has helped massively and has been the biggest influence on his progress I think. By that I mean the things that he is a bit obsessive over. Rather than being scared of them as I was (I worried about how insular they were and how much they took him away from us and others when he was "in the zone") I decided to see if I could somehow join him.

He's obsessed with travelling on buses and trains and I've always found them quite hard to share with him. He would often ignore me when I tried to speak to him or pointed things out on our travels. He was just too absorbed in it. It was frustrating as he's generally a social chap (although he's always struggled with speaking) and I just couldn't find a way in. Took me quite a while to realise though that even when he wasn't looking at me or seeming to listen to what I was saying or showing him, he was still taking it in. So I persevered, by basically being really annoying 😊

I tried really hard to speak with the same enthusiasm I saw he had for them, even when it seemed like he was paying me no attention. I would speak excitedly about the journey before we went out and then would recount the story during the day. I'd deliberately get the destinations or directions wrong, correcting myself in quite a dramatic fashion, just to try and get his attention really. It was a great way in; it turned out that he really loved that I was mad about these things too and it ended up opening him up, improving his language and especially his interaction. Now he actively wants me to be a part of these moments and will call me/ look at me expectedly and burst out laughing when we have that moment of shared connection. I never, ever thought that would happen. It's has been a catalyst for spurring on his development. He's has so, so far to go but it's made a difference.

Sorry this is so long. I guess I'm trying to say that there is so much to fear all the time. When I decided to stop worrying about something I couldn't control and tried to find a way to make it work for us, everything got better. His speech and our interaction especially. I know this is very particular to us, but I also think he was just older and ready to take things to a different place. Lots of things he just couldn't do a little while ago just seemed to click. I'm sure your little one will reach that stage too as he gets a bit bigger.

My DS is really happy in his pre-school so I think we will try and keep him there for reception. We're checking out all options though. I don't know how long he will last in mainstream but he's happy and settled and for a child who can be very (very!) resistant to things that is such a blessing.

Does your DS like his preschool? Do they have a good understanding of him and his needs?

ps, he is also obsessed with drainpipes, so I also had to become enthusiastic about them. Needs must!

My ds (ASD) is starting school in September too. I’m very anxious about it as well and i’ve found looking round schools quite difficult. The weirdest thing I’ve found is that I am looking for completely different qualities in the school than the other parents i’m looking around with.

Like seekingsummer i’ve found that since he’s turned four a couple of months ago he’s started making a lot of progress. Particularly in his speech. We’re also doing lots to try and prepare him for next year, not least getting him to wear more than one t-shirt and also to wear shoes!

Reports are always horrible to read as they have to focus on the negative things.

Hi liv. It's really hard looking at schools when you feel like the things you're looking for are a million miles away from others there. I had a woman ask me if I was worried about one school not being academic enough. That's never going to even be a consideration. That's when it can feel lonely.

Also working on clothes here. Argh shoes! My DS refuses to wear anything but his battered old trainers. Pre school don't care but god knows what I'll do when they are too small!

Have you found anywhere you like liv?

Thank you everyone for your really helpful replies. It helps so much knowing there are other people in a similar situation as it can feel so lonely sometimes.

Frusso - I am a complete clown (bad day yesterday) because I realise now I put in my post he is 40 months old when actually he is 46, and four in January. So I don’t think there is much hope of the LA agreeing to defer school for a year but I do feel he would benefit from it.

Seeking - thank you so much for the examples of how you are sharing your DS’s interests and passions with him. It is really inspiring. My DS loves feeding ducks and climbing rocks (and looking at drainpipes too!). We do enjoy these things together but I think there is definitely more scope for me to show a bit more excitement and enthusiasm and use these interests as an opportunity to share more language (rather than trying to get him interested in things which he is actually not that bothered about).

He loves his preschool and I feel that they really value him and want to do their best for him. His key worker is amazing with him and has put herself on a course for helping children with ASD. So lots of positives there. I hadn’t thought about him staying an extra year there - does this mean your DS would start in year one at school?

Liv - I know what you mean about looking around schools. I visited one yesterday which to many other parents seemed great but I kept thinking it’s so huge and noisy would be overwhelming for DS.

It’s interesting hearing a couple of you say LA reports focus on the negatives because I had always assumed they would talk up my DS’s abilities so that they could give as little support as possible because of funding problems.

We have issues with shoes too but also coat wearing! It is so freezing today and could I persuade him to put his coat on?! Don’t think so!

I hope it helps. I also found it a slog to get my DS interested in things he wasn't bothered about and found that meeting him where he was with interests really helped, especially with speech.

My DS is right on the age cut off (last day!) but even then it was a bit of a battle getting my LA to agree that he could defer and then start in reception rather than year 1. Even for kids with SEN they are reluctant to agree to deferral. It's madness - that extra year helps our kids so much. That said, our preschool were very supportive and the LA pretty much based the decision on them in the end (they didn't want to take the decision and kept saying it was up to the school who said, no, it's your decision. In the end, the school decided to take the bull by the horns and basically told the LA we were deferring and asked for any reasons why this couldn't be agreed. We have a private diagnosis and our consultant paediatrician also wrote a letter supporting our request to defer). We were actually well past the deadline for applying to defer as there was a mix up as to whether we were having a delayed or deferred start. We were told by the LA to apply to delay if we wanted to start our DS in reception rather than year 1 when he did start. Wrong advice from the LA! So while they make it hard, there's no harm in checking if they'd consider it. Very few people defer (because they make it so bloody hard!) so they don't have a great handle on this yet (our LA anyway) and are always essentially exercising their discretion.

I know that some LAs and school will allow you to build up hours when you start reception (ours allow a part-time start) which is another option

hurricane yes coats too! I agree about the schools feeing overwhelming but i’m Hoping with the right support in place it will be ok. Did you watch the Chris packham documentary on BBC? I thought his descriptions of how he views spaces, inparticular schools and offices really interesting. It definitely made me think a bit more about the space I would be choosing as well as the staff etc.
I always find the reports sobering as I see my ds differently to the examiners. He had a therapy session the other day where I could watch him through a one way mirror and it was fascinating to watch how he acts with other people. I suppose when i’m there i’m Focusing on him and not how he interacts with other people. Sorry but of a ramble!

seeking yes not being academic enough is definitely not our focus either. I really liked our local primary school. It seems to have a lot of SEN support in place and the deputy head was really enthusiastic about it. Another school I visited recently adamantly didn’t want to talk about SEN provision at all, she really shrugged me off and just told me to email the SENCO instead.

Sounds like your local school is great liv. A head/deputy who is onboard and enthusiastic about SEN support is a really good sign. I had a similar experience at a visit. You feel relieved, as you know it's the wrong place and you've found out ahead of time, but it's still horrible when you're brushed off. Some schools don't even pay lip service to inclusion. It's depressing.

As we're all on the 2018 journey, maybe we can exchange some ideas along the way about things we're doing to get our little ones get ready. I'm currently working on getting a coat on and pushing down, not taking off, pants and trousers (as can't get back on!) when going to the loo. Also working hard on speech. It's a work in progress...

I am considering our local school still and DD 1 and DD2 go there and it’s a familiar environment to DS. I really like the senco but I think all their experience of autism is the HF end and I don’t know how they’d cope with DS, especially if he doesn’t get an EHCP.

Good idea Seeking - I am planning to work on understanding and speech, toileting and coat wearing. Preschool are working on him sitting on a carpet place in a group.

hurricane could you arrange to speak to the reception teachers to suss out how much they would understand your DS's needs/how willing they are to get to know and support him? It's great having a good senco and familiarity always helps with our kiddies doesn't it? Maybe that would give you a bit more insight. I'm trying to arrange the same now.

Sounds like we're all tackling the same kind of things. I'll bet you'll be astonished how well your DS does at sitting for carpet time by the end of preschool. My DS used to have to sit on the nursery assistant's lap at pick up time to stop him running around (while the other kids sat angelically waiting for their names to be called!). By the end he was doing it too. It's amazing how much they can progress with some help.

Yeah it’s very hard to know how they’ll cope. Hopefully the SENCO could give you a better idea of what support they can give with and without an EHCP. I’ve been told by a couple of people that generally ASD kids can get by until year 2 as it’s more informal until then. But I suppose that is really dependant on the child.

We also working on not completely taking trousers off when going to the toilet. I’m really not sure how to tackle that one. We’re also working on getting ds to generalise more. He tends to get super attached to one person at a time and struggles if they have to leave the room. Also trying to reduce the headbanging.

I’ve had a meeting this morning with the senco of our local school where DS’s older sisters go. It’s made me feel a lot better I have to say. She’s prepared to work on a transition plan and has identified a quiet room for him and seems really sympathetic. So I am starting to feel like this is at least one viable option for him. I already know the reception teacher quite well and have discussed DS with her before. I don’t think she has huge amounts of experience of autism but she’s sensible and understanding and has the right attitude so perhaps with some training from the LA they could help him. Hope your meetings with schools go well. Keep us updated.

hurricane that’s great i’m so glad it went well!

That's great new hurricane. You must feel relieved. Hoping to have ours in a couple of weeks. I'll let you know.

liv, not taking trousers off completely- no ideas here either! Please share if you have a brainwave/some progress. Generalising is hard for my DS too.

My DS is terrible with cutlery (hypermobile in his hands so he finds it really hard) and would gladly eat everything with his hands if he could. So that's a big one for us.

My son will be starting school on September too. He has his assessment next month and is currently at a speech and language unit. We've been to visit the special school near us and need to arrange to meet with Senco at DS1s school.
So hard to know what is best. The special school would suit him really well right now as he has barely any speech but I'm worried long term that it's all about functional skills and no academics and I'm worried we'd be closing the door on him.
Maybe we could keep this thread going for everyone in the same boat.

Hi mama.

It's really hard isn't it? We have the same worries about what will suit our DS best. We're trying to read the future, which is why it's so difficult. I also worry that even in mainstream the expectations are so low for our kiddies so there's a feeling of pressure either way to try and teach as much as we can ourselves. I'd love to keep this thread going too. I'm sure between us all we'll have some ideas, and if nothing else it'll be good for us to have a collective hand hold as we approach September.

Just reading this thread and can I join!?! I too have a DS, 4 in December, diagnosed ASD who is due to start school in Sep 2018.
It feels so scary and lonely at times and reading this thread makes me realise there are lots of others with all the same concerns! Rather than just which school has the best Ofsted and highest SAT schools I am more concerned with the fact my D'S might strip all his clothes off if he gets them wet washing his hands after going to the toilet. I am also concerned that I do not want others to have low aspirations for him just because he finds some things difficult.

Seeking Collective hand holding sounds good to me!

Chasing My hope is that all of our children will find people who can see their potential not just focus on the things they have difficulties with but the reality may be very different, It’s one of my worries too.

Definite yes to keeping this thread going. Has anyone started the EHCP process? We have a Joint Assessment Meeting on 4th Dec with our LA. Not sure what to expect or how to prepare. I am told it is part of the process of assessing his needs and what provision he will need. It will involve Autism Team from LA, SLT, preschool, Equalities and Access Officer and probably an Educational Psycologist. I am guessing it will largely determine whether he gets at EHCP or not so want to be as well prepared as possible.

I've been told we'll be starting the process next year. I'm trying to find out as much as I can before hand but my LA is not big on communication. I am struggling to find out what provision there is at the moment. As my son is at an unit now they will be heavily involved.
Assessment is next month so need to get passed that first.
I have visited a special school and am going to arrange to visit Senco at the local school. But want to know if there are any units available.
Not long until your meeting hurricane do let us know how it goes and how it all works. Best of luck.