Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous threads:

Thread 1: www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2: www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3: www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Just spoke to CAMHS again and finally some progress. Looks like DS may at last be on his way to getting ASD diagnosis although she was not really open to discussing ADHD. A speech therapist from the learning disabilities team is assessing DS in school today.

Haven't really got much further re hair pulling but I am going to make written observations on form provided by them to help find a way forward.

@MrsDuBeke thats good, is your preference specialist?

@dimples76 I think sometimes they can be reluctant to diagnose both simultaneously for some reason. Good news on the ASD progress.

No news re DS school yet. Remind me no more kids, can never do the ehcp thing ever again

MrsDuBeke great news on the 1:1 funding. Is ds in school at the moment?

dimples great news on the ASD diagnosis. Hopefully they can help with the hair pulling too.

Did anyone watch the Katie Price documentary last night? I caught a bit of it when they were talking about what could happen if he were sectioned and held in an ATU and I had to turn it off. Ds is nowhere near as severe as Harvey but it still puts the fear of god in me thinking about that sort of outcome. I just can’t bear it.

I watched it Open and I found it quite emotional. The story of the sectioned son was awful and it's also fears for the future and wondering how much support DS will need as an adult.

If only we could protect them forever. I can’t bring myself to watch it all, hopefully they found somewhere suitable in the end and Harvey will flourish.

Tired here today, ds has had two very early mornings. Home school was a bit hard going as he was tired and distracted so we didn’t do as much but it’s enough given the circumstances.

I can't watch things like that. I can't even read this book I bought. I'm so anxious for DDs future 😫

My nanny watched that Harvey documentary and said it was really good but I'm not sure if I can bring myself to. Did you see though that the new changes to the Mental Health Act are supposed to stop people getting sectioned just for Autism/Learning Disability? So hopefully things will be better/safer for our kids, and there will be more awareness that institutionalising them is likely to make things worse for them not better.

metro.co.uk/2021/01/18/autism-is-not-a-mental-health-issue-yet-i-was-sectioned-13915544/?fbclid=IwAR3hUZszTRsfwr72s2WDBjb2VHkT9A7IIYXKlCTIYvz8nIe0Y8w9NWOEXzk

Sorry I've been away so long again. Things have been crazy busy with work, homeschool, various assessments for next school, etc. I've been trying to sort out my new contract to go more part time. Didn't manage to get quite as part time as I was shooting for but it's a start (I'm down to 3 days so not bad): will try again later in the year.

@danni0509 great to hear about the well deserved parenting praise but your DS's school continues to boggle me. I'm probably a bit late but I have a printer at home: if you ever want to print something and post it to you I can do that?

@dimples76 great that DD's adoption is finally sorted - sorry the celebration didn't go well. I think any change is unsettling, even if it's a good change! Will be great if DS can get his Dx soon as well. Hopefully things will move quite quickly once he's had his assessment: it did for us.

@Mumofsend the "presents like a girl" etc. stuff drives me crazy too. I'm sure it has a bad effect on girls who "present like a boy" and boys who "present like a girl". I have a work friend whose DS is so like DD but nobody has ever suggested a Dx for him. Luckily she is aware, so she is able to accommodate at home, but it does mean he finds school a bit tough. I have another friend with a DS heading to university who has always wondered about ASD. He does so well but I can see where she comes from. But again, he's got quite a "girl" presentation. Maybe in many cases parents being aware and accommodating is enough, but I think having a formal understanding of the different wiring couldn't hurt. I'm sure there are lots of boys who have the more internalised "girl" presentation of autism that are never picked up and just have to struggle on - sometimes doing well and sometimes not.

And welcome @rhino1234!! No rules/exclusions for joining here! If you find it helpful it is lovely to have you.

All is well here. DD is struggling a bit with lockdown. She's really missing school/her friends (especially as DS is still going to nursery, so in a sense she sees what she is missing out on - though obviously it helps massively with homeschool that he is out and busy for a chunk of the day). I do worry about her adjusting back to school when the time comes too, as much as she misses it now, though she was fine last time. Especially as she is changing school in the summer (her school currently only runs up to the end of Year 2 so they all have to move on). It's a lot of change coming up. She nearly cried when she heard on the news about schools going back in March rather than mid February. And who knows if it will even be March? I guess if she starts to really struggle we can talk to the school about getting her back in a couple of days a week on MH grounds based on her SEN.

Anyway, I think we will just try to get to half term and then take stock.

Hope everyone else is doing OK!

Good to hear from you Light. Sorry dd is missing school but glad you are all otherwise well.

Homeschooling has gone to pot here. This week ds has been increasingly difficult about doing it. It has been getting done but not without lots of threats and bribery. It’s a right pain in the backside. He’s currently refusing to do this afternoon’s work and hiding upstairs. If this carries on he’ll just have to go back in to school. I spoke to the SENco yesterday before Boris’ announcement and said if the closure was to continue then we’d have to reevaluate. Thankfully they have to be flexible this time around.

Hi I’ll be back later but just a quickie. Sorry I haven’t been on, had loads going on.

Dh lost his job last week, we’ve had to claim universal credit, absolute nightmare! So now have no money for 5 weeks, dh out of work etc etc

The La have funded ds a specialist graduate teacher (I think she’s starting next week) it’s costing the La 25k for the next 6 months until he leaves 😯😯😯😯

ds will be doing full time at his current mainstream with her (just need to finalise all the details) but she’s staying with him until July. So I think he’s going back full time next week or either the week after when she’s started. He’s also having another Ta so he’s going to have 2-1 but with one being the specialist teacher.

Those recent consults have came back and said NO for the 2 special schools then this morning the one 30 minutes away that said no 2 days ago on the consult! has phoned his caseworker this morning and said a ks2 place has come up for September and his case worker has accepted straight away so we just need an acceptance letter now.

The school is an all the way through until he’s 19 special school. They said they can meet his needs based on his consult paper work.

He’ll get a taxi with a 1-1 aid everyday.

FINGERS CROSSED!

crossing fingers

danni so sorry to hear about your dh’s job. That’s so awful for you all

However FAB news about ds, you must be so pleased. It will be such a weight off your mind. Did you like the school? I can’t remember which one that was.

Light good to hear from you. It's not surprising they're struggling with all the uncertainty.

Open sorry home school is so difficult.

Danni so sorry to hear about your husband's job. Such good news re DS though - hope that it all comes off.

Oh wow, @danni0509, what a day! So sorry about your DH's job but brilliant news on DS! Hopefully DH's job is just a temporary setback, and DS is sorted for the foreseeable! And half an hour is really not too bad at all as a commute.

Thank you to all

Ds new specialist teacher is starting with him on Monday, he is doing his usual 2.5 hours for the first week with her (?! At the hours) then from the following week they want to increase it by 30 minutes a time.

The local authority have paid the funds immediately for the sn teacher (can’t fault the local authority to be honest, they are jumping through any hoop the school put in the way and his caseworker is like a dog with a bone for his specialist place)

I said this specialist teacher is on a 6 month full time hours contract, the la have paid the 6 month full time fee, so why is ds having to build up in 30 minute increments every week! it will take until the end of March to get to full time after you take out the half term holiday.

So anyway they will talk to me next week about how they will do it. But I have made it extremely clear that I want him to have the specialist support full time as soon as possible.

I can see that he might need some time to get used to full hours, but I would have thought they could transition within a couple of weeks really? Great that the council are forcing the school into reasonable provision - but very depressing that the school are resisting and have to be force fed the resources!! I guess getting the cash to support DS without actually having to do anything much was quite a sweet spot for them....

danni I agree with Light on timings, especially as ds is not a school refuser (as far as I know). It will be really interesting to see how he comes on with a specialist teacher. Will you get a chance to talk to her about what you think is important?

We got our home learning done without incident today, thank goodness. He did well. We’ve also told the school we’d like ds to go back after Feb half term. The longer he is off the harder he will find the transition back so I think it’s the right thing to do. Hopefully cases will be significantly lower by then, it’s 3 weeks away.

@LightTripper my DD presenting like a boy delayed her diagnosis as girls can apparantly mask and she can't so she couldn't be autistic initially.

Sorry to hear your DD is struggling

@danni0509 amazing news re the school. I can't imagine the LA will be too thrilled at the transition taking that long!

I am looking into ASD for my DS seeing as his EP read autism so clearly. Going private as for me it's more about knowing than the diagnosis being recognised anywhere else. The preassessment came back with really strong indicators for autism for him too. I'm devastated at the idea of ot being both of them even though DS clearly had additional needs I just assumed its just a delay rather than a reason for them :(

Mumofsend it’s a lot to take on board and it will take time to adjust

Dh starts a new job Wednesday! Less hours than his last one but more £ an hourly rate so swings in roundabouts. In the 20 years I’ve known him he’s never been out of work so I knew he’d have something soon.

Ds did his first morning with his specialist teacher today, what a joke! Apparently he broke her visor and had an unsettled morning hitting and throwing things (not unusual) so he stayed with the fucking dinner lady and the specialist teacher is making baby steps to get to know him 10 minutes here, 10 minutes there! He’s been outside with the dinner lady and this new one kept popping out to see him and when he said go away she did.

That’s not what 25k has just been paid by the LA for!

Now the 30 minute increase in time has been put on hold until he gets used to her (by seeing her for 10 minutes at a time)

She’s going to Google meet him in the afternoon instead, to speak to him.

GIVE ME STRENGTH I knew full well the school would keep taking the piss 😡 so she’s staying and being paid all day and he’s been sent home which will be ongoing I know his school too well so what’s she in for and being paid for? To help with all the other kids.

I’m fuming.

@danni0509 just go straight to the La. Could you suggest that if they are funding this teacher and the 1-1 could they not just do it at home?

His teacher just phoned me to arrange a Google meet for this afternoon, I just told her I’m not happy with the proposed situation.

I said the reason we got the specialist teacher paid for was so he can return to FULL time and be included in the classroom ASAP, not to be outside with the dinner lady again like today.

I said him being unsettled is not unusual and I want him back to FULL time ASAP!

Not doing it in ‘baby steps’ which will take until he leaves in July with that school!

She just kept saying we don’t want to stress him out.

Just annoying, as it’s never done in ds best interests.

I would completely understand if they said right this week next & week we will increase his times by 15 minutes a day or whatever and after half term he will be back up to full time.

But they want to take it really slow and steady which will take months.

No chance, could cry how much they take the piss x

A specialist is being paid to stay and help them out when they are sending ds home after 2.5 hours. It’s a total joke all of it.

Yes I’ll phone his ehcp caseworker ASAP. School know I grass them up anyway! 😂 so I’m surprised they are still doing it as I’ve told school several times that I’ve told x person and x person this and that.

So they do know I don’t keep quiet.

Also ipsea phoned me Friday, in the end they got someone to call and apologise for the missed call after I emailed to say no one had contacted me.

I told the worker everything (EVERYTHING) she said she’s dealt with hundreds if not thousands of families and it was the most extreme and prolonged circumstances she’d heard of and advised me straight away to seek legal advice and then emailed me several points that need raising legally.

danni what did the caseworker say? Yes, it’s a joke that a specialist thinks it’s ok for the status quo to continue when they are being paid to work with your ds.

It’s all well and good for IPSEA to say seek legal help but I presume that’s not free? What are you going to do?

Not the best day here. Ds refused to work this morning. The SENco called and spoke to him and after lunch we managed to get maths, English and phonics done and I called it a day. I did lose my temper and shout at him though after nearly an hour of faffing about and constant distraction tactics. I’m feeling very bad about it, I feel I should manage myself better

The SENCO said ds can go back after half term. We’ll discuss the details next week. I feel like it will not go down well but he was so pleased to see other kids in the park yesterday, maybe it won’t be so bad.