Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Open I thought about what you said about school for DS. I suppose the question is what is it about this particular one that isn’t working do you feel and can that be changed? If it’s the other child you would think that would be easy for them to manage (diff groups etc.) Even if it is something that can’t be changed at least that tells you what to look for/ avoid at his next place. I suppose the main thing is trying to sift out and understand what it is. You would think school could have input on both things (commenting on the issue and trying to modify the situation but if that can’t happen at least giving input as to where they feel the issue arises.)

I suppose without knowing that it’s hard to know what to do differently next time if that makes sense?!

No, this wasn't my line manager who I have previously complained about. This was my big boss- who I have never had any direct contact with. At a 'town hall meeting' (bleugh- I hate that language) in front of about 50 people of which about half were strangers. I had another terrible night's sleep but have woken up feeling good about myself. It would have been v easy yesterday to have just sat quietly and listened to the bullshit or to have lost my temper when I felt insulted. But I kept my cool, my integrity and stood up for others. Certainly won't do my career any favours but it is going nowhere any way!

My DS tends to toe walk and I think that contributes to the number of trips and falls he has because his balance is off - that and not paying any attention to where he is going/looking in a different direction to his feet. I thought being bare foot was good. We used to see physio/orthotics and DS had insoles for flat feet but over time the arches developed more. DS also had physio when he was much younger to get him moving but once he was walking they seemed to lose interest. My nephew who is 4 (genetic duplication and brain injury) has a v odd looking gait - his legs are v wide apart when he walks but they don't seem bothered about that either.

carrie I think the issues are multi-faceted and some of it is the school and some is ds himself.

Covid and the knock-on impact has absolutely not helped our situation. Ds has just got so used to spending so much time at home he is reluctant to go to school. He's not a confident learner so that doesn't help either - it's one more reason for him not to want to go. From the school side of things, he's currently afraid of this one particular child (the school obviously can't tell me about him) but I don't think that's always been the issue, it's what he's focussing on right now and it's a barrier to getting him in the door and working on the other issues.

So far, school haven't delivered anything in the form of intervention - there is no written plan which is what I am going to push for. They agree to things but have not yet delivered anything. I know other children in the older classes have had 1:1 forest school sessions, small groups, OT, that sort of thing. He has had none of this and only 5 weeks left of this term/year.

I hope that his class next year will be a group of children who are less behaviourally challenged but I don't know if that's possible. I have not yet seen the class list for next year but they did say they were making changes.

Today he ended up staying just over an hour and a half which is the longest in a few weeks. I've emailed his teacher to find out what happened.

sorry if too many questions but why haven’t they done anything Open? I don’t really get that. DSs mainstream have the ‘never gets done’ attitude, not seen a SALT in a whole year ffs! They just wait for me to sort something out and/ or tell them what to do. Then don’t do it.

One of the benefits the SS say they have (say, at least) is they have a full experienced team of people so if they see an issue it is literally an internal call to someone and then a plan is made and actioned quickly, just really pro active. Not waiting and faffing and messing and frankly doing fuck all like the current crew, partly cos they can’t be bothered and partly cos they haven’t a clue what to do!

so why aren’t they bringing some suggestions forward in a timely and proactive way?

DH has decided he will be the main contact for the new school because I’m too much of a loose cannon! Can’t possibly think why….! He’s welcome to it tho!!

Possibly because they are overwhelmed with the volume of kids needing support, I don't know. For instance, before half term they agreed they would start Lego therapy for him. That hasn't started yet. They have agreed an EP assessment but her dbs isn't back... time just moves on. We were told ages ago that he could have OT, we filled in the forms but nothing has happened yet and OT is only in 3 days per week.

I think we filled out the OT forms before the Easter holidays.

I’ve just had a call from ds teacher for his parents evening and honestly they were so positive! I’m thrilled!!

His teacher said the past 3 weeks at school he’s been kind, considerate, has been exceptional with his listening skills, he’s made brilliant progress with his work especially his maths.

Over the last year he’s met every one of his ehcp targets, (his annual review is next week to set the next ones) he’s never met any of his targets, these have been rolling on since reception without being changed as he’s never achieved them fully.

She said his new medication is definitely working now.

So all good!

danni that's wonderful. What a your ds is.

So... begs the question. Are they going to increase his hours?

Thanks open he got star of the week too and a postcard home, he chose his prize at school, a note pad, a scented pen and a bottle of bubbles. Bless him!

I haven’t mentioned hours, just yet. As 3 weeks ago they were having a nervous breakdown with him every day, so I’m just leaving it for now and not rocking the boat, I’m just so pleased he’s behaving, but will mention it before he breaks up, as the arrangement was ds did 9.30-2.30pm. So that’s what I would like for September.

Oh bless him. I know his school have been a pain, but it's great they are celebrating his achievement

That's fantastic news Danni. Well done to your DS.

Open it must be frustrating that it seems to be you that is doing all the running. You would have thought for example if he started a day with an OT session or forest school then he would be better regulated before entering a classroom.

One thing that I didn't mention about the Tribunal which took me by surprise was that the LA's barrister's suggestion to the judge that the Tribunal consider ordering CAMHS to expedite DS's assessment and make it dual ASD and ADHD. One of the LA's witnesses was the clinical commissioning person whose background is as a clinical psychologist but I think now controls the finances and she said that if was plain to her that he would get both diagnoses. Fyi she has never met him! Even if they don't make the order I might send the Tribunal decision to CAMHS in case it holds any sway.

Unfortunately DS's TA has seen several absence seizures and a couple of 'funny moments' today so it looks like the increased dosage is not working. The epilepsy nurse is calling me on Monday so I will ask her about the other medicine you mentioned Carrie.

Wow, dimples. How do you feel about that?
I hope you can get the medication for the seizures right soon.

That’s exactly how I feel. I’ve been going in with him every day for months and usually it’s me trying to persuade him in, chase him when he runs off etc. I’m rather fed up but hormonal too so I’m sure things will feel brighter tomorrow.

Sounds great Danni! Do you think it’s the sertraline or adhd stuff or both?

Bad weekend here, Dd has tonsillitis and DSs molars are erupting so both miserable.

are you on their backs Open about it? I suspect a daily polite but stroppy call may soon bring about some Lego therapy or whatever else they have promised. Of course you shouldn’t have to.

carrie I will chase but I’m keen to maintain a good relationship for the time being.

It's a tricky balancing act isn't it Open when you're trying to build relationships with school staff and also trying to get them to deliver what has been promised.

We have had a rather disastrous day out. There were 4 adults and 7 kids. My Mum was wondering out loud why we (including herself) couldn't control them. I said at least 5 of them have SEN and the other two are 2 year olds! The place we visited is hard to describe but it is full of twists and turns and staircases. I think it will be my first and last visit until DS turns 18! DS ran off with his older cousins in hot pursuit. They got lost 'underground' and my sister's autistic twins were terrified. When we found them the twins were crying their eyes out. My sister had to take them out to the play area. Later in the play area DS kicked an injured bird and another adult shouted at him. I was already walking towards DS to try and move him away from temptation. I told the stranger that DS doesn't understand that it's wrong. Then he started on me - saying 'whose fault is that?' Possibly not v helpfully I said no-one's. For someone who tries to avoid conflict I have found myself in a lot of arguments this week. Is if bedtime yet?

omg dimples get out the wine!!

Re schools, I used to be the really nice mum who the teachers loved. That’s when I have my DD hat on. I have in the last year though turned into acerbic, demanding, relentless mum you would pay just to go away. The one I know all the teachers slag off in the staff room, who gets the glares and cold shoulder. All only in context of DS of course. Really not a very nice person at all. I think the staff are utterly confused as I have 2 personas!

im hoping nice Carrie can resurface with the new school for DS but Rottweiler Carrie lies only just below the surface. This is why DH has banned me from school communications!!! 🤣🤣.

danni that sounds very stressful. I second wine!

It’s a fine balance. Everyone has good intentions, that’s the thing. But they need to deliver too, intentions aren’t enough.

carrie I hope this school is a turning point for you all.

Afm, card not written and presents not wrapped but I should have about 3 hours to get it done in the morning before dh gets up!

We are behind schedule too Open 🤣🤣🤣

I am just drinking a nice red whilst eating an onion bhargi in the garden. I often think how nice it would be to see you all for wine in RL but I don’t think I’d ever get home!!!

That would be good Carrie. Only just got to the wine as my little darlings have lead me a song and dance at bedtime. Pretending to sleep to get DD to settle didn't quite pan out as I fell asleep.

I think it would be so lovely to meet up with you all IRL, it's like we know each other so well but oddly never met ha!
DS asked me to leave his room at 9pm as he was really tired...he did wake up at 6am this morning though!
Oh @dimples76 , I wouldn't have been able to.hold back with that old man, so much ignorance out there. What a total stress for you!
Kitten is also tired tonight, think he's been sleeping in the days in the week when house empty, not used to having a full house at weekends!

That's great news on the school report @danni0509 and the new school visits @carriebradshawwithlessshoes !

I hope things improve with the "new" school soon @openupmyeagereyes . I was reading a thread on Twitter this morning by mainstream teachers talking about how much children are struggling post-pandemic with self-regulation, behaviour, etc. so I do have some sympathy - though as you say he's been there a long time now and you would expect to have seen several attempted interventions by now really? Hopefully they can get their act together.

We were just away for a very late half term. Airports went OK! DD triggered every single scanner on the way out (and wasn't able to do the second scanner so had to be manually searched poor thing). However, the lady that did it was lovely, the staff were all very patient and calm, so even though she really struggled I was able to say after "well you now know what every single check is like as you triggered every possible thing" (even her bag was pulled off the x-ray for a hand search) - which seemed to help in a funny way as she did really well on the way back and even managed to walk through the security gate by herself without hesitation. I then triggered that one, so she got to watch me being searched and see it was not such a big deal, so hopefully we are getting there. She was much more anxious during the flight itself than she used to be, but still managed well, so overall I'll take it as a definite win.

Sounds wonderful Light, well done to DD! Out of interest do you (or anyone?) tell people in those circs that she has SEN (airports etc.) There’s obviously a lot of expectations and a lot of nightmare kids with no SEN so just wondered.

one thing that’s stressing me out about a long flight after reading a thread on here recently is back of chair kicking (on the plane.) it’s something DS does on long journeys in the car, one poster wrote on here about a commotion as her DS was doing it and the people in front ended up having a massive go at her and effectively spoilt the start to the hol. Since reading that I’ve been hyperventilating esp as our flight is early morning so I’m sure the first thing the people in front will do is put their bloody seats in recline to sleep…..