Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old 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

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Everyone welcome x

Magrat reminds me, once, me, my Dh, dad & step mum took ds for a walk down the beach for an ice cream. My dad suggested we walk back along the sand. So we did.

Ds ran really fast towards the tide and I ran in and got him my trainers / leggings soaked, ds was wet head to foot then I had to drag him off over the sand which stuck to his wet soggy clothes. What a performance!

I don’t like the beach either

I don’t know why I’m awake, it’s my turn to get up tomorrow. Too much to think about.

Still sat in the garden. Lovely evening out. We all worry so much for our kids, don't we. Everyone deserves a I think!! Thanks @danni0509 it's my birthday tomorrow too! To think, 14 years ago right now DH and I were just going back to the hotel and opening some champagne (which we drank while watching mtv!!)

Happy birthday Magrat!

DS loves water but can't swim. I have taken him to various types of swimming lesson over the years. The last ones were going well until a new boy joined the class and then he refused to get in. Just before the first lockdown I had arranged for DS to go a SEN swimming class but they do not appear to have resumed. So I am also on the hunt for affordable 1:1 classes. DS will be starting swimming lessons with school in September - I had asked about 1:1 support in pool to be written into EHCP but that seemed to fall on deaf hears. I'm hoping SENCO calls today. In the recent private OT report school organised the OT said that they could not diagnose DCD because DS has a global developmental delay diagnosis. This does not make any sense to me as I don't really see GDD as a diagnosis. They said fine motor skills are on 0.1 percentile and gross only fractionally better. DS has significant co-ordination problems - also can't pedal or hop.

Danni I hope in a better school and perhaps with ADHD medication things get easier.

Good luck with the school refuses, sorry I do not have any advice.

Happy anniversary and birthday Magrat

Ds has been awake since 1:50 and saying he’s not going to school today. I hope you have better luck liv.

Oh no, Open you must be exhausted. Good luck with the meeting with school

Happy birthday magrat! I hope you have a nice day.

Oh no open! How did it go?

It took four people including the headmistress to get ds in this morning and he still had to be peeled off me! They are going to get the pastoral team to help and maybe do some home visits. I think this may take a while to sort out.

We used to take ds swimming a lot, then he suddenly decided he didn't want to go anywhere near a swimming pool. We looked into lessons but I didn't feel that it was worth spending that much when he would likely refuse to go.

liv he’s still at home, says he’s not ever going to school.

It’s great you have a pastoral team. Do you have any clue what’s causing the refusal?

I'm so sorry open. It's so stressful.

No idea what the cause is. I think it's going to take a bit of unpicking. He's not at a stage where he can express what's wrong yet so there's still a lot of guesswork involved.

Same here. I have a parent consultation booked with a play therapist but it’s not until next Friday. It will probably be the end of term before we get anywhere.

Ds went off in the taxi. I’ve warned him we want 👍🏻 behaviour not 👎

I keep doing it with my thumb, up for when he’s good, down for when he’s bad. So he knows what’s what. I do it all the time.

I sometimes think he doesn’t even know it’s naughty and he shouldn’t be doing it.

So he was sat in the taxi about to leave and I went what behaviour today ds?? and he did this 👍🏻

So let’s wait and see...

Sorry about the performances again this morning liv & open.

Honestly i have no advice for either of you x

Ignore the squares no idea what my emojis are doing. Supposed to just be thumbs up / thumbs down picture.

Happy birthday magrat 🎉🎉🎉

Ds has gone in this afternoon after his teacher called him. We just had a call with the teacher and SENco and we are going to take it day by day.

Thanks everyone! Sorry there's so much struggling for the little ones.

EHCP question - a couple of weeks ago the SENCO forwarded the private OT report (commissioned by the school). The report recommended weekly sessions with the OT and the OT to devise sensory daily diet to be delivered by TA. I asked SENCO if these recommendations have now been included in the EHCP (we had review meeting last month). She says that she will have to discuss with LA caseworker as it's a private report. I had also asked in light of the report if DS's 3x a week 1:2 sessions with the PE apprentice could be made daily. She replied that the PE apprentice is leaving. I feel that school seems to take the view that they have X resources so DS can have this, rather than DS needs Y so we will seek funding for that. Is that any of your experience?

Well done for getting him in open. Did he have a good day?

Dimples I know what you mean about that, it definitely happened at ds's last school. It is up to the LA to include it in the plan and then funding attached so that the school can make it happen. Have you had any response from the LA post review? They should notify you within four weeks of the meeting (I laugh slightly typing that cause it took our LA a whole year to respond to us the review before last!)

dimples I think that definately happens unless you can get it written into the EHCP and funded. You can ask them to provide their own bloody assessment if they want a second opinion

liv I think it went well, the teacher called me and talked me through it but he's still saying he's not going tomorrow - it's going to be a marathon not a sprint I think!

The main thing is that he told her he is finding the work too hard so they can step back on that. He doesn't like it when they give negative feedback to me in front of him when he's had a tough day, which is fair enough, so they won't do that any more. He said there's 'sometimes bad news' and I think this is exactly what he means as I know he hates it and always tries to pull me away. They will only be positive from now on.

If he doesn't go in first thing then his teacher is going to call, that seems to help. Thank goodness it's nearly the weekend!

I hope everyone else has had a good day.

On a more interesting note, I have a call booked with Chris Bonello tomorrow to discuss telling ds about his dx. Hopefully we can also touch on the school refusal if he has experience with this. I'm looking forward to it though it will be easier if ds is not in the house.

Phone call from school after school today to tell me DS really struggling, running off and darting into classrooms, hit three children with water bottles today etc etc etc. They say they can't lock the classroom doors and it's obviously a behaviour pattern he's got into. They want to help etc. But worried about safety (DS and the other kids). Tomorrow he's only morning and in a totally separate space away from the other children completely. Then they'll see how he gets on and decide re next week. Happy birthday to me, hey. I started crying on the phone as it's all so much. They were very nice. I just want DS to be happy, I just don't know what to do. Thinking about paying for a private adhd assessment as I really think that's where all this hyper impulsive behaviour is coming from. Argh.

I don’t know what’s legal or what not dimples but the LA try to pull fast ones all the time especially if it’s going to cost money. I’ve even heard of them sending in ‘their’ own specialists to counteract your ‘private’ report.

That private send guy last year that ds old school got in, recommended that ds had something (would have to read report to see exactly what) for his adhd some kind of therapy, that conveniently didn’t get included and when we had private salt 2 years ago she recommended that ds had weekly salt input and wrote a list of things to work on (something called colourful semantics and some other stuff) and that never got included either. Like zero reference to that report anywhere in his ehcp.

They have never funded anything additional like salt or ot, just his 1-1 really.

I hope you have some luck and don’t have any issues getting what your ds clearly needs x

Open good luck for your phone call tomorrow, I’ve often thought about ds and his diagnosis and him not knowing but I know he wouldn’t understand at all, it’s way beyond him so I don’t have to worry for now. That will be interesting to see what he suggests to you. Good luck for the morning.

Magrat don’t worry about school and you crying, I have done several times before now. They will understand how difficult things are for you.

Liv good luck for the school bus tomorrow.

@Mumofsend how is ds & dd? How are you?

Ds went swimming this morning, they printed me a photo off & after school I got a positive email, ds has been in the classroom quite a bit today and played positively with the other children. He keeps talking about another boy at home and said they both fell over yesterday when they were chasing each other, will explain the graze on his knee. So I’m happy he’s having some social interaction at last!

Liv in the same boat in terms of getting the LA to send out the revised plan. Think that I am still waiting for last year's.

I just feel frustrated that school paid for the advice but then have ignored it and not even tried to get the LA to pay.

Hope that your consultation goes well Open. Your tears were perfectly understandable Magrat.

DS's TA stopped me yesterday to say that she will email me re planning transitions. After 3 years she will stop supporting DS at the end of this term. I am dreading DS's reaction. Any advice?

Thanks all. Oof @dimples76 that is tricky, I'm not sure. Social story about what Mrs X is doing next and name and pic of new 121?
Special school for Sept don't have 121 or classes grouped by age so I'm trying to explain all that to DS.
Does anyone else worry that their DC just won't ever be able to be independent? I know my DS is still young, but I'm starting to realise how unprepared he is for independence. It is genuinely terrifying.

I was amazed, we got our updated plan within weeks last year. The previous year it took 11 months.

Magrat I’m sorry you had a rough day and on your birthday/anniversary too. You will not be the first parent they will have had burst into tears so don’t worry about that. Regarding independence, it’s a common worry. We just have to remember that our dc are young and will change so much. They may get to it later than their peers but it doesn’t mean they won’t get there. Try to stay in the present. I can recommend the Calm app and also Stoicism. Personally I’m a work in progress too

dimples a social story is a good idea. Do you know if he will meet the new TA this term?

danni ds has made a few comments that have made me think he’s starting to notice, or verbalise, his difference to other kids. I think we need to have a plan and script to talk to him about it and I’m desperate not to mess it up, I want it to be as positive as it can be.