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.

I know what you mean Mamapants. I hate the tutting! Think I have been growing a thicker skin over recent months but it doesn’t come naturally. Does your DS get anxious in noisy busy places? I know soft play can get pretty hectic. Mine sometimes loves it but we have to get there early when it’s quiet. Stay strong ❤️

There was a party on hurricane so it was really busy. He normally likes it for about an hour then needs to take himself off somewhere quiet.
He'd gone in the toddler bit about twenty seconds before me and was trying to hug some babies and all the mums were just muttering about 'whose is he anyway... He's too old to be in here anyway... He's pushed this boy already.' I know people who just have babies can often think children are older than they are and expect more of them but I'm just sensitive about my baby anyway. I had to take him out even though he isn't too old but I can't cope with having to defend him and explain to strangers.
He just doesn't understand about boundaries at all he thinks he's making friends.
Then he was trying to take turns on a rope swing and the girls wouldn't let him because he wasn't asking! So he was getting heart broken.
I just hate the thought that his peers will always reject him because he doesn't interact how they expect him to.
It's snowing here this morning and he has said snow repeatedly which is lovely.

Mamapants, I totally know what you mean about being fed up having to explain things to complete strangers if DS is not behaving like a NT child. It’s one of the things I am finding hardest. Also the the thought of rejection from peers. I do think though that as children get a bit older then they understand that they are not all the same and accept differences quite easily. My two DDs and their friends are very good about DS and his needs and I think school if it has the right attitude can do a lot to help with this.

Hello all!

So sorry for the radio silence. We've been stuck in EHCP hell trying to get our LA moving (29 weeks down the line and no plan and then attempting to palm us off with an SEN Support Plan ). I think we've got past that now but who knows what they'll try next.

I have been dipping in and out but will be glad to be back and to catch up properly with everything

ps, hugs mama- soft play can be hell. I find myself getting looks and rolled eyes while I navigate all of the tubes and slides following my DS around. People just don't have a clue. But ahhh to your DS saying snow ❄️

Soft play is hell. I had to stop going with two kids as my ds is Houdini and can apparently escape from any enclosure in under 5mins! Ignoring the looks is hard. They really have no idea!

Sorry it's been a nightmare seeking. Hopefully it'll be sorted soon.

I've spent most of this week on the phone to various advisors, therapists, LA people and the nursery try to sort out what was apparently a technical glitch! The nursery reports somehow hadn't gone through. Preparing for tribunal anyway in case the LA are having me on. Such a pain!

Hey liv

Yep, it's really hard to ignore the looks. I have a thing I do now which really helps, for me at least (also with public meltdowns). I focus totally on my DS's face and stay as close to him as possible (realise this won't work for all kiddies and also means I get some direct hits on the slaps front if it's a meltdown!). It means you kind of physically block other people as you can't see them (you can still feel the stares and disapproval though!). I find it makes it a lot easier as I'm in this zone of just me and DS and everyone else kind of fades into the background. Of course, once you look up the judgey faces are there but it makes it easier not to care!

Thank you. Hope so too.

Oh gosh what a pain. Hope you get it all sorted (and that the LA see sense and back down!). It's so stressful isn't it?

Hello all,

Can I ask if anyone's child eye stims? My DS started doing it about a year ago but it has massively increased in the last 3-4 months. Quite hard to know how to deal with it, especially as it's much harder to distract from compared with other stims he's had (which were much more anti-social/noisy). I know he needs to do some stimming and that trying to eliminate it would be a massive mistake (and that's not something we want or are trying to do) but I'm a bit worried by just how much he's doing it

What is eye stimming? We mainly have verbal stimming here. I find it increases when my ds is anxious or overexcited. Not sure if there is that much that you can do about it.

What do you mean by eye stim seeking?

Hi seeking do you mean holding things up to his eyes very closely and looking out corner of his eye? My D'S does this a bit but hasn't wiggled fingers in front of his eyes which I know some do. We are struggling atm with what seems like a sensory overload, he is hyper and throwing everything. Not sure what bad is printed it and obviously he can't describe how he feels so it is becoming very trying!

I feel like the list of DSs stims is growing all the time. He does look out of the corner of his eyes while shaking his head slightly, this is an upset stim.
He also does hand flapping, a funny wriggle when he is excited,lying down and shaking his head when upset, all kinds of funny facial ticks mainly for happiness.
Some of them are very cute and nice knowing he's very happy.

That's hard chasing, my ds does similar on anxious weeks. Does he like pressure? My ds likes being wrapped in a blanket or having his hands and feet squeezed. If he's really struggling I let him throw things down the stairs, which randomly seems to calm him down and stops him throwing things at his sister!

I agree Mama I like the happy stims too.

My DS tends to throw things when we are trying to get him to cooperate at times when he just wants to relax. But sometimes he just does it because he thinks it's funny

Hey all,

Sorry I should have explained. Yes, chasing it's kind of like holiding things up to his eyes. I think it's called visual stimming, so for DS he will line up, say,
a bottle and a salt cellar on the table and then does this thing with his hands like he's tracking a line through them and squints at them both. He likes anything perpendicular like traffic lights or lamp posts and squints and titles his head to look at them at a certain angle. Things like the bars of a cot would be something he'd go below and then look at them from a certain angle. You can imagine what s he's like in somewhere Ikea! I think maybe it's the way the light hits them. It's something he seems to do for pleasure but he now does it a lot! It's really hard to distract him from

mama, ha, yep my DS also thinks throwing things (or other people throwing things) is hilarious. It's a phase that comes and goes. Very trying when we're in the middle of it!

Oh now you've described it DS does that too. He loves looking through bottles or coloured glass. He loves light so he can sit for ages looking at how light reflects off water. There is a kind of big curved bubble in soft play and he sits for ages moving his hand back and forth through it to work out where it is as the light makes it look closer, if that makes sense.
He once spent an hour just putting his hand in and out of the water to look at the light on the droplets - at least that's what I think he was doing. I would love an insight into what he's thinking when he does this.

Everyone talking about different stuns made me remember to seeing the ones hat have come and gone (chewing clothes, teeth grinding) so I guess this one will do the same eventually. It's just the intensity of it- much more than the others. It's hard finding a happy balance isn't it? They need to do it but they can't do it all the time. I find it really hard working out how to balance it.

seeking yes it's a phase here, comes and goes.

stims not stuns 🙄

Mama that sounds really familiar! Yes, I'd also really love to know what my DS is thinking about when he does it. The way he sees the world (literally) is so different. J find it fascinating. He sees faces in things (front of trucks etc), but not in the way you'd expect. When you ask him to point to where the eyes are, they are not where you'd expect them to be.

In fairness, I love looking at light through droplets of water too. It looks beautiful. Not sure I could do it for as long as DS though

Yes very beautiful. Thinking about it I might get some crystals for his room. I think he'd love that.
Maybe if you had a set time everyday for visual stimulation he'd get used to only doing it at certain times a day. I'm sure that's the theory with sensory diets isn't it? Not sure I never actually got round to reading any of the books I bought on sensory needs.
This had reminded me of how DS used to just lie down in the middle of fields, stroking the grass and watching the clouds and we couldn't get him to move.

Has anyone had a questionnaire assessment as part of the assessment process? We have one next year, focusing on early development. Wondering if you know what they might ask so we can try and remember.

Crystals is a great idea. I had a mobile with crystals when DS was a baby which he loved but it broke. Maybe I'll try and find it again.

Ahhh I used to cloud watch when I was little! It's a pretty blissful way to spend time (the kind of thing that doesn't happen once you're all grown up running around after kiddies).

We had a questionnaire from the Ed Psych. It was mainly about things now though (can he eat with a spoon etc). They did ask about some early development stuff though - first steps, sitting up, rolling over, first words and pointing - if that's any help.

I'm not sure if it's the same thing. We've been told to try and think back between 0-3yrs and to allow at least two hours for it to be completed!

Sorry the assessment questionnaire is next week not next year.