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 watched that recently too open. I agree it was quite a difficult watch in places. So annoying about the early wake ups, hopefully it's just a short phase this time.

I'm not entirely sure what the assessment is, but i think it's part of the EYFS curriculum. I've had to give them input and then he's assessed by the teacher, with salt and senco input. I have a meeting on Friday afternoon to talk through it with the teacher and Senco. So I guess I will find out more then.

It will be good to talk to them as ds didn't have a parent's evening last half term.

That sounds like it will be really useful, you should get a good sense of how he’s doing then. We won’t have anything like that though we met with his teacher and the SENco last week to discuss his progress.

Re. The programme, I had mixed feelings about the special school. They seemed to be doing a lot of more classic type ABA therapy, I think it is still big in America but I loved the fake high street they had where the older ones could practice shopping and writing cheques etc. I thought it was a great idea.

Yes I loved the high street. I'm really not a fan of the American attitude towards autism. I think it's very heavy handed.

I do think though that they have got the whole early intervention system sorted though. I have some friends living in the US their little boy has verbal dyspraxia and the amount of early years help and support they have had access to is amazing. Not necessarily the therapies I would have chosen but amazing that anyone is able to access it.

There were certainly a lot of heavy handed techniques in that programme, especially at the first signs of any aggressive behaviour. It must be so hard, though, once the children get so much bigger and stronger. I’m hoping we won’t have that to worry about, ds is rarely aggressive at the moment though who knows what puberty will bring.

The attitude in many of these American facilities still seems to be on trying to ‘fix’ the autism, I think that’s primarily why there’s such a push on early intervention. Most of it must be funded through insurance too so I guess there’s more money available and there’s a financial incentive, unlike here. This programme was 2012 though so maybe things are different now.

I really felt for the parents of the two younger autistic children. The dad was very emotional still. The scene in the hairdressers where Louis showed the boy Peppa Pig on his phone and they were able to cut his hair was very sweet.

I didn't see that but I do generally like Louis Theroux's approach to things so I'll see if I can find it on one of the media players.

All well here. DD is off to the zoo today so very excited. We had a phase of difficult drop offs but the last couple of weeks have been great.

DD is supposed to be "narrator/townsperson" in her nativity but (a) I don't think she is going to say her line (which is probably fine as she's doing it with another girl) and (b) she thinks she is being a star, so I need to talk to her teacher to find out what is going on. We had thought that she was going to hold up a star, but now I've seen the costume list there is a costume description for a star there, so is it likely they have a child dressing up as a star and DD holding a star?! Ahhh, I'm sure they'll sort it. I might drop her teacher an e-mail and just ask her to talk to DD about it to make sure she is clear about what's happening.

Light it’s on iPlayer, one of the extreme love series I think. I was surprised we hadn’t seen this as we’ve seen most of his documentaries. He seemed a bit unsure to start with but soon you could tell he became very fond of the children and he talked about their personalities being intertwined with the autism.

Glad your mornings have settled down, it must be a relief. I’m not surprised your dd is confused about her part. Hopefully you can get some clarity.

Ds is a star too, it’s a play for reception and ks1 so none of his class have speaking parts I don’t think, though they sing of course. Quite a relief.

Well ds did not want to do the dress rehearsal/1st performance today and now seems to be coming down with some sort of virus. Asleep now but I’m anticipating a sickfest tonight.

Hope your dd had a good day at the zoo today light and that you get the nativity thing sorted.

Hope you have an ok night and that ds isn't I'll open!

Oh no, Open hope that he is on the mend soon.

Our nativity is next week. Like Light he was initially confused about his role - he told me that he was a knight in shining armour. I found out from his 1:1 that he is a camel - a talking one at that. He has been practicing his line very enthusiastically and shouting around the house 'he is the son of God'!

That assessment does sound good Liv.

We finally have our grommets surgery date 2nd January. Not ideal especially as we're going away then. Have decided as holiday cottage is only a couple of hours from the hospital to stick with our plans and travel directly from there

Hope DS is feeling better soon Open.

DD had an amazing time at the zoo yesterday. Saw the nativity but apparently Joseph wasn't there because he had to go and pay the king. Other than that she was very excited about the bats. Apparently there were two joined together (one hanging upside-down and one the right way up).... I asked her if she had any idea what they might have been doing but she didn't seem to have any ideas . Anyway, she had a great time and even managed to do ballet after, which we were quite surprised about.

This morning she got very stressed about doing her reading book and threw it on the floor, which is very not like her as usually she's happy to figure things out or get a bit of help. She said getting it right made her anxious and I had to promise not to say "well done" if she got it right. Poor thing. I think this season is a lot for them to take in. She loves it, but it's still a lot to deal with.

So DD is a star - they just managed to put the wrong thing on the bit of paper! I think they changed it because she was worried about saying her line, and didn't want to hold up a star even, so her teacher thought if she was the star she could just stand there. Which was a nice thought!

But now I have until Monday to put a star costume together

Good luck with that Light! Fortunately for me school provides the costumes.

Feeling a bit down this evening as my son slapped his 1:1 today. I was just thinking the other day how much better he has got about lashing out....I've got a rare night out tonight but I feel like crawling into bed and having a good cry.

Good luck with the costume light.
It must be very difficult for your dd worrying about perfection all the time. My ds worries if things are broken and won't go back together in the right way. It gets worse when he's anxious. I think though rather than blaming himself he blames the thing hat doesn't work.

I'm sorry dimples. Do you know what triggered it? I hope you can have a good night out, it sounds like you deserve it!

I'm not even sure if it's perfection she's aiming for. I think she gets anxious either way. She doesn't like getting it wrong (I think it's why she's not very keen on writing as she always says her letters are rubbish), but she also doesn't like getting it right if people notice and praise her (maybe because that piles on the pressure to get it right again next time in some way?)

I'm feeling more relaxed about the costume. I had a brainwave and floated the idea to DD of just sewing a gold tinsel star on the front of a navy dress she's got, and wearing it with gold tights/sparkly shoes, and she seems happy with that (as long as I don't cut up any of our existing tinsel ), so hopefully that's a simple solution that doesn't involve spending any money or any time shopping!

I'm really sorry about DS's difficult day dimples. There will be a reason though I'm sure that doesn't help very much. It's so near the end of term, they're all exhausted. He's getting better and on the right track, that's the main thing. Will you get a chance to talk to his 1:1 about it before the weekend? I hope you managed to enjoy your night out anyway. Weekend soon xx

dimples how cute, your ds enthusiastically practicing his line. I hope you can make the grommets surgery work with your holiday. Rubbish timing for you. I hope you managed to enjoy your night out despite the worry about your ds. I would try and talk to them today about what happened. My ds pushed his ta fairly early on (I was initially told hit) and I was sad as she’d been so kind to him and is lovely. Once I knew what had happened I could understand why he’d done it (while not condoning it). He was upset and had needed and asked for space repeatedly and not been given it (with good intentions of not wanting to leave him while he was upset) and he had tried to push her away. It was probably a lesson learned. Anyway, I agree with Light, he’s on the right track. Once incident does not negate his progress.

Light I’m glad your dd had a great time at the zoo and you have some clarity on her part in the nativity. We didn’t have to make costumes either so you have my sympathies but your idea sounds fab. Yes to the extra demands of the Christmas season being a lot for them even if, overtly, they seem to be coping. I think some additional behavioural issues are to be expected.

liv I hope all’s well with you.

Thankfully ds was not sick but has another cold. I was called to pick him up yesterday so he’s missed the nativity which is a real shame (for us, he’s not bothered) but no guarantees he would have done it anyway. I might as well keep him at home today too. This is similar to last time whereby he seems ok at home but school is obviously too much to cope with when he’s not 100%.

We had another SALT session yesterday. I thought it was doomed as half an hour before it started he decided he wanted to go to Argos in the car and he didn’t want her to come. This went on until she arrived but then, thankfully, he did engage with her. Once she’d gone the whinging resumed again

Oh and we’re back to early rising. 4:30 most of the week with a bonus 3:30 a couple of days ago!

Yes I see what you're saying light. It must be very frustrating for her.
I love the idea of your star outfit!

Open I hope ds feels better soon. It's a shame he had to miss the nativity but like you say I'm sure he wasn't too worried about it.

We are going through a weird patch at the moment. Ds is pretty manic and overstressed but he is also making some really good progress at the same time. His Makaton has come on loads and I feel like he is processing information really well.

On the other hand yesterday he refused to do anything in OT except sit in the ball pit. Then when we got home all he wanted to do was play with the dryer/hoover/kettle/lights etc and was properly screaming at bed time.

I've decided not to go to the assembly this morning as I think it might tip him over the edge if he see me. I'm looking forward to speaking to his teachers this afternoon.

@openupmyeagereyes my ds is up for 5-6am most days with the odd earlier day thrown in. He's also not going to sleep until 9-9.30pm, he wakes in the night screaming mummy aswell. drives me mad! He also doesn't sit still for a second during the day so how he doesn't crash the second I put him into bed I don't know. I still have to sit by his bed until he's asleep too so most of my evening is used sitting next to his bed in the dark

He's worse since he's had his tonsils and adenoids out and we were told that it would improve his sleeping go figure!!

Do you use melatonin? We couldn't have it as ds had sleep apnea not sure if he still has sleep apnea or not anymore as that's why his tonsils adenoids were being removed so I assume it's sorted that but we haven't had a follow up sleep study so not 100% sure.

My ds behaviour isn't great at the moment he just screams and shouts at me all day long. tantrums are coming thick and fast over anything and everything, sometimes just looking at him in the wrong way will start him off. Talk about bloody egg shells!

He had a meltdown at teatime last night because I tried to get him to eat a fish finger (I'd done rice, cucumber and sweetcorn with it what he likes so thought I would try a fishfinger too as he's so so limited in what he eats and I'm really trying to sort his diet out) but because he got himself in that much of a state over a fishfinger he was sick all over and sicked all in his bowl of food and all over the kitchen, I had to carry him upstairs put him in an empty bath and run the water with him fully clothed having a meltdown inside the bath to wash him and peel the sicky clothes from him

Finally got him calm and then he went really hyper singing baby shark for what must of been hours at the top of his voice he was making his own verses up too and he didn't go to sleep until nearly 10pm then just as I went downstairs to sort my washing and drying before my bed time he woke up for round 2.

I stopped smoking 2 weeks ago and last night when he finally fell asleep for the night I could of quite happily smoked 20 one after the other kids!!!!

Oh God danni that sounds intense. I hope you had something else to treat yourself with instead! I think it's the end of term and they're all so tired, hopefully they'll all settle down again in the New Year.

Sounds like what DS will eat (the rice, cucumber, sweetcorn) is pretty healthy, so hopefully you don't have to worry too much about his diet even if it's quite a restricted list? Do you think the smell upset him or was it just the thought of something he didn't like being on the plate?

@LightTripper his diet is very limited but other than chocolate not that unhealthy.

He'll eat satsumas strawberries grapes, sweetcorn cucumber activia yoghurts nutri grain bars, plain pasta with sweetcorn in & rice with sweetcorn and cucumber in, whole meal bread & weetabix and shreddies, no meat other than a box of McDonald's nuggets, and he ate bolognaise with his pasta last week for the first time, ate the lot but won't have it again that's all he lives on the foods above and sometimes he'll eat weetabix for a week then won't touch it for months and that's how it is with those same foods eats them for a while then won't eat them for ages he just won't add food to that list. It's those foods every day on rotation!But chocolate he is obsessed with my family call him willy wonka it's the reason for about 75% of our tantrums in this house,

& i would love to say his behaviour is because he's tired but sadly he's only doing 2 hours a day at school so I dread to think of the behaviour when he is eventually full time x

I just wanted to pop in and say that this time of year can be really difficult for your kids in schools. So much change to routine, Christmas decorations, Christmas shows, Christmas Parties etc etc dark nights, possible colds.

My little one is in Year 3 now and we've recently changed schools (from a mainstream to a private specialist) He has his Christmas Show next week, so I'm hoping that he will actually participate!, (as opposed to either just sitting there looking overwhelmed or just crying - the pattern for the last 6 shows...)

@MrsFrisbyMouse good luck for the Xmas show. 7th time lucky!

Has anyone decided what to buy or make (if your buying or making) your dc teacher / 1-1 for Xmas?

I've bought a big box of Thornton's for his 1-1 & same again for class teacher, but debating to get another gift to go with it, as I feel a tight arse when they work so hard with ds especially his 1-1. I used to spend about £20 on his nursery 1-1 at Xmas then give a tin of roses for the other nursery staff to share.

I was thinking of buying his 1-1 a Yankee candle to go with the chocs but my dh said wine but they may not drink, so not sure what to do.

Would you prefer a nice bottle of wine or a Christmas Yankee candle?

I spoke to my son’s 1:1 yesterday and she was lovely about it but the hitting incident has been a bit of a blow to me. He was getting wound up and had wet himself and TA was trying to help him get changed. He went to hit her and she asked him if he was trying to hit her and did he want to hurt her, he said ‘no’ then gently put his palm against her face before drawing his hand back and slapping her on the cheek. Before yesterday he had only ever done this to me about 3 times and the last time was well over a year ago. I will admit when he did it to me I had to walk away and have a cry - it feels so deliberate and calculated. If he was raging around and lashing out I would find it easier to understand and I know logically that he was equally out of control in this situation but it just feels awful. I just felt so ashamed. I did go out but my mind was elsewhere.

Good luck with all the Christmas shows. Open I hope that your boy’s sleep improves soon. Danni I have bought his teacher and TAs personalised Christmas tree decs and we’re going to make cards tomorrow.

dimples sounds like it’s about getting a reaction? I often think that about my ds when he deliberately does things he knows he shouldn’t. What did they do and say to him afterwards? I’m sorry that you didn’t get to enjoy your night out. Rubbish timing