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.

When balancing on things at the park I would hear "careful Daddy Pig" !

Lol chasing

My DS went through a stage of saying 'it's all nonsense!' if he didn't understand something, a la Daddy Pig. I miss that!

My DS loves the Lion King movie and also the Julia Donaldson adaptations - particularly the Gruffalo and Room on the Broom. They are good as they are a bit shorter. He does quite like Peppa Pig but it’s not a favourite sadly. He much prefers Hey Duggie!

Yes Lion King was a favourite here too. Initially he was into films with not much talking in like Shaun the sheep and Wall E. He’s currently obsessed with Wallace and Gromit.

Chasing love ‘careful Daddy pig’!

Liv, what does the OT do with your DS?

Sometimes I find it hard to get my head around what an OT does as they use lots of terms like proprioceptive and vestibular, which I always mix up! But basically the OT uses a series of activities to help my ds reorganise and regulate his sensory system. So they do lots of swinging, bouncing, rolling, climbing, deep pressure etc to help his body understand the different sensations. They then intersperse this with sitting down games where they focus of fine motor skills and turn taking or physical games which involve ds listening to several instructions and carrying them out in the right order.

Hello - I'm hopping on too if that's OK. DD is 3.5 and waiting for an ADOS in February/March but we've been told to expect ASC diagnosis. She is already in a private pre-school that goes to age 7, so although I have been looking at the local state schools I thought she was kind of sorted (or at least we had a fall back!) But then her school e-mailed yesterday to say they thought maybe they weren't best suited to take her to primary level and we should look at other schools. It was a real shock as they have been really good/pro-active in supporting her so far, and haven't flagged any real problems with her learning or behaviour (just that she tends to play by herself, and talks to the grown ups more than the children), but I think there must be a lot more problems than that for them to write the e-mail, so we need to get to the bottom of that.

I just find it really hard to work out how to find the right school when I understand so little about what her needs/difficulties at school will be, and what different options there might be for schools to meet them. I feel like I need some kind of training video on the different problems that ASC kids can have at school and what schools can do to help so that I can ask the right questions and make a good choice.

We've tried asking questions of professionals but nobody seems willing to say much about what she actually needs in practical terms beyond "oh, maybe she would benefit from some SLT" (the same SLTs that signed her off because they seemed to have no clue what to do with her - they were just coming to my house once a month, not talking to DD at all, and just suggesting we play sabotage games which is fine but only gets you so far) or "maybe someone else would better meet her needs" - it's all very confusing and frustrating.

Taking OH to see my favourite state school so far next Tuesday, so hopefully that will be positive (although it's quite far away, so there's no guarantee we'll get in). It's so weird, we were already worried about schools before we knew DD had SEN - but we had no clue just how much your choices shrink when SEN comes in to play!!

I'm also with you Chasing (especially after yesterday!) in worrying that our children will just be seen as "problems" to be "managed" successfully until they are somebody else's "problem" - rather than whole people with lots of potential.

On movies, DD also loves those Julia Donaldson ones and the Wallace and Gromit ones. It's great that they're all around half an hour. Some of the Disney ones are soo long: it's hard to get her to stop watching half way but it steals so much of the day if you watch a whole one. I try to save them for rainy or poorly days.

The only other "half way house" we've found so far is the Disney Winnie the Pooh and Piglet movies: they are only just over an hour I think, so a bit shorter than some of the other Disney ones.

Hi LightTripper, welcome aboard

Sorry to hear about your DD's school. How stresssful It's so not on that they've emailed now without raising any issues before. It feels like the same story for all of us; battling hard for some provision and desperate for real expectations and ambitions for our kids. There is no reason why there shouldn't be a 'can do' attitude about how much our kids can achieve. I'll bet they'll surprise us all.

Choosing a school is so hard. We're all crystal ball gazing aren't we? Like you I thought I had school sussed - all the primarys around here are oustanding. Turns out DS hadn't read the memo . So now I'm worrrying about where he'll fit in. Nowhere seems quite right.

Yup to professionals all passing the buck. It seems to me that any tricky question is answered with 'that's something for OT' (taking of which, liv our OT sessions sound very similar to yours).

How is DD getting on generally?

Right, I need to try out Wallace and Gromit!

My experience of schools so far is mixed but I have asked to have 1:1 meetings with the SENCO and Head at each. I think you can tell a lot from how they respond to a few open ended questions. For example one that rang alarm bells for me was
'" what would extra support for a child with DS needs look like in this school?" reponse
" well what you need to know is I am the Head here and I will spend any extra funding as I see fit based on my personal assessment of your sons needs, it is not your role as a parent to tell me how to support your son/ spend the money...." Now i understand she is the professional not me, I also understand her experience of children with extra needs probably far outweighs my own, however the attitude didn't really sit well. I am this particular child's mother and without doubt know him better. I have no intention on telling a school what to do but i do wish to be in a partnership with those trying to educate my son. I felt this partnership would not work....gut feeling and reading between the lines.

Hi Lightripper!

How frustrating, it will definitely be good to get to the bottom of why they can’t keep her where she is. Also very rude to email you rather than arrange a face to face meeting.
In terms of SaLT, we saw someone for a while who had no idea how to deal with ASC kids, after a while we stopped the sessions as I really didn’t feel ds was getting anything from it.
Totally agree about not knowing what to ask or expect from the schools. I definitely got a feeling though when I visited as to whether they were interested in SEN needs or not. Having said that only time will tell whether they follow through on what they say!

On the other hand the school i think we have settled on had a wonderful wonderful SENCO, she was warm, experienced and welcomed hearing about my thoughts and concerns for DS education. She even agreed that the LA are ridiculously unambitious and reassured me that any teacher coming across such low aspirational targets in an EHCP would just have to ignore them for fear of being hauled before ofsted. The Head was less impressive so I do feel somewhat anxious that we have really based our decision on this one woman and the class sizes! However with slim pickings as far as SEN mainstream goes I think we have to clutch at the positives and follow our hearts and instincts.

Hi LightTripper remember you from previous threads, nice to catch up. Sorry to hear about pre-school life can certainly be a rollercoaster hey!

Definitely with you on importance of following your instincts on the right school for your DS/DD.

Liv - the OT sounds great. Is that on the NHS or have you had to pay privately?

Hurricane we had to go private. Our borough only has one OT and my ds wouldn’t have qualified to see her.

My son aged 5 has just started - deferred and also had to wait for a unit. It’s a specialist early intervention unit attached to a mainstream school. Small class, very gentle and understanding. Sensory room. Totally dedicated to kids with ASD. Not intellectually challenging but that’s ok I do that with him at home. He needs those other challenges, like being able to sit in a group.

I’d urge others to consider this if it’s available. My son could not cope in mainstream yet, however hasn’t the learning disability that many special schools require. His language is very delayed and he will not just cooperate. It would be way too much to expect him too even with a Sna in mainstream- his behavior would deteriorate I’m sure.

Thanks all! Can't really complain about the email as they asked for a meeting and we asked for a heads up of what they wanted to discuss. I guess my frustration is more that it comes out of the blue (no hint before that the upper school might struggle to handle ASD) and that we struggle so much to get any practical guidance. It's like a bunch of fire engines tearing around with their sirens on, but refusing to actually stop and help while I try to put out the fire (which I can't even see very well for all the smoke) with a water pistol....

I have also had at least one really good conversation with a state school SENCO though, so clinging to that thought. Somehow we will find the right school... I just didn't really brace myself for our first rejections quite so early on in our journey.

It's frustrating re OT provision or lack of. My son saw the OT, she agreed that he had motor skill problems and sensory issues. I was referred to a 'Sensory Smart Parenting' course (which was good) and then he was discharged..naively I thought there might be some actual therapy! I am looking into private options at the moment but I don't think I can afford it.

My son loves the Paddington movie and the Yogi Bear one. I can't decide whether to take him to see Paddington 2 - it would be his first trip to the cinema.

Dimples before my ds started OT I found this book really useful:

Raising a sensory smart child by Lindsey Biel and Nancy Peske

It gives a good overview of sensory problems and some strategies to use.

Thanks liv, I will definitely take a look. I have just read 'The Out of Sync child has fun' which had a lot of good ideas too

My DD got really scared by the first Paddington movie ... that bit in the shower where the shower head is swirling around like a snake really freaked her out! It's funny because she happily watches things like Moana or Little Mermaid or Trolls that I think are much more scary ... but I think it's probably the fact that it's "real life" rather than cartoon that makes it scary for her. I'm sure she'll like it eventually but we'll leave it a couple of years. Similarly I thought she might like Mary Poppins but we tried it and it was obviously a bit old for her. She didn't seem that engaged and when I asked if she wanted to keep watching it or watch the Clangers instead she chose the Clangers!

We have our pre-school parents evening tonight... kind of can't wait and also dreading it all at once. But hopefully we'll learn a bit more (this is with her actual class teacher rather than the SENCO, but I assume she probably must have input into those discussions).

That’s so funny, my ds was terrified of Paddington too.

Good luck with your parent teacher meeting!

It is really odd because my boy gets freaked out by animated slapstick e.g. an episode of Postman Pat where snow slides off a roof onto someone but the live action/more realistic stuff he loves. His favourite scene in Paddington is the bathroom one! I think your children's reaction is more understandable.