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

Hi. Hope every one is ok.

Easter half term is going ok here, had 3 bad days in a row initially but yesterday he was better behaved and today not so bad, I’m walking him to the park shortly. We have found a park nobody uses, I don’t think anyone realises it exists as it’s through a huge field tucked out the way a 20 minute walk from my house so we’ve been visiting that quite a lot. It’s nice as I can sit on the bench and let him run free without having to stop him hitting all the kids, it’s gated off aswell.

We have done plenty of long walks which is good as I’m dieting (again) and he’s spent a fair bit of time out on the trampoline.

Sunday I took him for an Easter egg hunt at my dads, my dad has a 2 year old living next door and whilst ds was in the back garden the 2 year old banged on the fence so my dad opened the gate and let him in to play (he doesn’t just randomly let kids in the garden he knows the parents and asked first 😂) I thought oh ffs dad, ds and small children don’t mix, so my dad got the water bombs out, I warned ds if you throw a bomb at Henry or hit him your going home. Anyway ds kept kissing him and the little lad was crying so I told ds he doesn’t like it and to leave him alone but he was being gentle and not hitting.

Henry threw a water bomb at ds and absolutely soaked him and as he went to throw one back I said ds you where warned not to throw bombs I told you we will go home, so he threw it onto the floor instead.

I’ve been talking to him about ‘consequences’ so the other day he hit me in the face about 10 times (bloody hurt me aswell!) so I took his iPad straight off him and he didn’t get it back at all until the next day. I was fuming.

This morning he said mum what would be the consequence if I kicked you, I said it would be losing the trip to the park today so think carefully about what your about to do with your foot and he put his foot back on the floor.

Hopefully he’s learning!

It did make me laugh though hearing him say the word consequence 😂

Light is dd going to a state school or have you found another private one? Hopefully she will settle in but I understand your worries.

Open, brill that ds is dry in the morning. Does he use the toilet at all in the night? Or go through the whole night? Do you put him on the toilet last thing at night / first thing in the morning?

Mrs dubeke is ds ok on his bike? Ds can ride his without stabilisers now but Christ it’s like he’s jumped on it after a bottle of vodka, he’s lethal 😂

danni he goes before bed, about 7pm and then whenever he wakes up. He’s definitely capable as he’s been dry so many times he just hasn’t been reliable. I’m hoping this is it now 🤞

Great that your ds thought twice about his actions. For a while ds would ask us all the time what we would say if he said or did x, y or z. Some of it was silly stuff, some of it was about boundary testing without doing the thing. He doesn’t ask so much any more. We had a day last week where he tried to pull my hair for about half an hour. Pure spite because he didn’t want to turn his Switch off. He wasn’t allowed it for the rest of the day after that. He gets like this occasionally whereas usually he’s ok or will just grumble a bit.

We have the 'if I did x, what would happen questions too...we also tend to blame things on imaginary friends...! @danni0509 we have a larger balance bike for DS as, while he can do pedals, he gets frustrated so we decided to take a step back and focus on balance, then go straight for a pedal bike without stabilisers at some point. He is fast on the balance bike! I am only comfortable going to the park if DH comes too. It's the impulsivity that worries me alongside the motor delays.

It's another private one @openupmyeagereyes and @danni0509. We always planned that when we sent her to a school that finished at 7 as it's not a normal transition point for the state system - but will definitely think about state again for secondary (though probably only if we move out of London). It seems nice. We really liked the SENCO and Head and they have nice small class sizes (2 form entry but max 20 per class) so it's not too big or frenetic. One of the others we looked at is 5 form entry and has a lot of SEN kids and seems to really know its stuff on SEN (I think a lot of SEN parents in London do go private) but it just seemed a bit big and busy for us.

It is a bit of a schlepp. I'll probably bus it, but I do now have a bike (though I've only been for one wobbly ride on it!), and DS just learned to pedal, so maybe we'll be able to bike it. Anyway, we'll see how wobbly DS and I are by summer and then we can decide what we're going to do!

Sounds like your DS is doing really well on impulse control @danni0509!

And glad you are having dry and slightly later mornings @openupmyeagereyes - hope things continue dry and maybe even slightly later!

Good morning, I hope it's ok to post on here, I've been reading through this thread looking for advice for my younger child (3.5). She is autistic but a different profile from my older autistic child (he is 6). In September we have to start thinking about a school place for her the following year, and I'm uneasy about it. She is very bright and has huge amounts of language, so everyone keeps saying how fine she seems. But she is already masking like a pro and then at home she falls apart, all her pent-up anxiety is expressed through meltdowns and physical behaviour. At home she is demand avoidant and simply getting her dressed and out the door is a marathon sequence of rigid routines and endless patience and strategies to help her when she stalls and refuses. Highly restricted eating with about 10 safe foods only. I'm very worried she will not cope in a Reception class and that her behaviour at home might push us all past breaking point. But there is no evidence yet of her showing challenging behaviour outside the home, so I don't know how I'd get her an EHCP or a small class setting, which is what I think she needs.

I suppose I'd like to ask, what would you do if you could go back to the point before your child started school? Hope it's ok to post a question on your chat, thanks.

Hi clocks. Does your dd have a formal diagnosis? Is she currently at nursery? Such a shame that she’s already masking at 3 . Is your ds at ms or SS?

Light great that you’ve found another small school that is a good fit. How have we got to the point where our dc are moving to KS2 soon? It’s crazy

Our later mornings did not last long... we’ve had 2 days of 3:30 and then 4:20 today. For a (short) while I was hopeful a different brand of melatonin was helping as we got one called Mylan this time where we’ve always had Circadin before, but no!

Ds has been on very good form, happy and chatty. He’s very into books again at the moment (it comes and goes) and has started reading bits to himself for pleasure which makes me so happy.

We have an inset day Monday so back to school on Tuesday. I hope the holiday is going well for everyone else.

Oof on the early starts @openupmyeagereyes! Glad he's enjoying the reading, it comes and goes with my DS too. We're finally getting reading books home (school thought he wasn't ready although his phonics is sound) and the reading diary says to read it times...so DS has agreed we read it 3 times, no more no less! I'm trying to explain its a guideline but he is so absolute with things.
He woke u at 2am, came into our bed, and fidgeted so much all night. Next time, I'll try him back in his bed I reckon, at least then I can go back to my bed once he's settled!
Hi @ClocksGoBack welcome! I think what's been hardest for me is overcoming my naivety that support and adjustments would just be provided. DS' school now are rely good but I still have to remind them every now and then of their legal duty to educate him even if he is bring challenging...the HT tried the 'we have 29 other children in the class' line but dont let that stand unchallenged, that is their problem to overcome with staffing etc. DS now has ehcp with full funding finally so has 1:1 support ful time but now we are battling for a special school place to give him a more holistic inclusive education. But it all feels like a battle.
We're lucky in a way that DS presents similarly at school and home but it can fluctuate. I kept a diary for years between when preschool first mentioned issues and his diagnosis at 5. This helped to build a picture of his differences, need for complex routines, special interests, sensory differences, rigid thinking etc. This helped to diagnose him especially as, at the EP appointment, he was super social and chatty (learned behavior though). Now he is super chatty and is fascinatedby numbers, calendars, shapes etc., but still needs high levels of support to be in school as he can't cope with the sensory overload of a mainstream classroom with NT peers. We have also had some shockers of experiences at his first preschool and holidays clubs, where they tried to say he was naughty and all this stuff,just not understanding that his demand avoidance comes from anxiety at notbeing able to predict what comes next due to his asc. Top tips would be to find a school with a good senco, ideally a sensory room or at least a garden or allotment area, sen experience, if it feels wrong it probably is, and get the school setting to help with an EHCNA.

Hello @openupmyeagereyes and @MrsDuBeke thanks for replying. DD has a diagnosis and she is at a nursery that gets extra funding for her to have some sen support, it's not 1:1 but she gets extra support around transitions and eating, and does attention builders group. Thanks for the tips re finding a school with sensory room and garden etc, that's a good idea. My DS is at MS but we're hoping to get him into an autism unit when his EHCP comes through.

Ds woke up wet at 1:10 this morning so we’ve had our first accident after 12 days. He did not go back to sleep!

Oh no Open!

DS cried at bedtime last night that he was scared about returning to school today. In particular he was anxious about the yard being too loud at playtime. I guess it is a positive step that he can tell me about how he is feeling rather than just screaming. DD is at a settling in session at nursery as I return to work on Thursday. I should enjoy a couple of hours freedom but I am just moping about the house.

Clocks I think that there is no harm in applying for an EHCP assessment for your DD now. You do have evidence of SEN through the diagnosis and current additional support. My boy went from 9 hours 1:1 funding at nursery to an EHCP with full time 1:1 at school (I did have to appeal as LA refused to assess).

I totally relate as my son masks at school. No screaming, no violence and generally compliant - who is this boy?! He didn't mask at nursery though.

Oh dimples, great he can tell you. I’m looking forward to ds being able to be more specific. I watched an Instagram by the aspie world on school refusal with some good ideas but ds is not at the stage where he can verbalise it in enough detail. Hopefully at some point. I hope both your dc have had a good day.

Ds had a 10 minute power nap in the car so he’s likely to be really grumpy later.

ClocksGoBack you’ve had good advice. How do you feel about the suitability of your ds’ current school for dd? If you’re looking at new schools my advice would be (I’m bullet pointing this because I’m tired 😴):

attend an open day to hear the head talk or ask to meet them separately. They set the tone for the school and their attitude is very important IMO. Meet the reception teacher too if you can.

be upfront about dd’s needs and the support she requires and that you intend to apply for an EHCP.

despite the above remember that staff can and do change. Our SENco has just gone on her second mat leave, her first was ds’ reception year. His reception teacher (who we adored) left the Easter of his reception year.

I don’t think I would have done anything differently yet. We chose a small village school just out of our catchment because we loved it, our village school is bigger and I was very unimpressed with it. We had lots of discussion with them about ds’ needs and his reception teacher attended his EHCP planning meeting before he started. The head is brilliant and though we’ve had some tricky times the staff so far have been great. I am anticipating KS2 being more difficult as the pace increases but we will take each year as it comes. Ds is behind his peers but making progress which is great. For reference he has full time 1:1, I would not send him to school without it at the moment.

Hello @ClocksGoBack!! Welcome to the thread.

I don't think DD masked exactly but she was definitely tired after nursery and school. The main bit that was hard for her in Reception was the transition at morning drop off, so if I had my time again I might have tried to arrange for early drop off. In the end we got through it by having a single TA who usually took her hand when I dropped off and found her something to do (so it was a transition from one adult to another) and a very elaborate dropping off ritual, which we gradually were able to pare back over time.

The other thing we did was really try to remove as much as possible of other demands. She used to do a swimming lesson on Saturday mornings which she enjoyed, but as soon as she started school she found that very overwhelming and upsetting - she just really needed weekends to herself. So looking back I guess I would have canned that in advance - instead of spending most of the first term trying (and failing) to make both work.

I think a huge amount depends on the school. DD's school was not very knowledgeable about autism but was very small and pretty child-centred so it worked out well for DD (though we have other friends there who are not super-happy with it, so I think we were lucky that it happened to suit us).

Really sorry to hear about DS being upset @dimples76. Can he take ear defenders to school - or can they find somewhere quiet for him to go when it's all a bit crazy? We're lucky DD is quite good at blocking it out when it all gets too much, she just takes herself off to a corner and looks for some bugs.

And sorry for the disrupted nights @MrsDuBeke and @openupmyeagereyes! I love the independent reading too. It was such a joy and refuge for me growing up, and I love that DD has that too! I also think it's a great way to learn about different people and relationships in a safe environment.

Hey 👋. Wife to a guy with high functioning autism.. diagnosed Oct 2020 after a decade of me asking him to get an assessment. 6 year old DS appears to also be on the spectrum. Very slow going getting help from school and gp. School did an assessment and a report in December and said they have zero concerns. Gave me the same paperwork to do at home. It was like looking at 2 different children.
Lockdown homeschooling almost broke us all. DS was practically traumatised by it. I had to do 30 hours in 3 days. DH is part furloughed as not much work so he did 3 days homeschool and I did the other 2. DS hated every minute of it and really struggled.
Behaviour deteriorated rapidly. Bedtime was torturous. Refusing to bathe, get dressed etc. It was just horrendous and I never ever want to have to do it again. He went back to school for about 3 weeks before half term. I hoped when he went back he would improve. He got worse if anything. He was sat with a child on the 'naughty table' because he just will not focus at school and distracts other children. DH phoned the teacher during the week before Easter hols and asked her if she had worries as we were reaching screaming pitch. She again said no nothing to worry about (surely being made to sit on a special table is not nothing to worry about). She said he does ask to use the bathroom every half an hour or so. And he talks incessantly about specific topics depending on the day. At the moment it's Egypt. Before it was anatomy. He found an anatomy book and basically knows every organ, location and what it does. Obcesses about things.
Easter holidays was the last straw. He suddenly decided he didn't like one of his cousins joining in play and hit him. Started name calling. Trashing the living room with toys.
I rang my gp surgery in desperation. Told no appts or phone calls. Fill out a form on website and someone will reply. Took 5 days to get an answer. Just told school need to send a report. Obviously half term so no way to contact. Emailed and waited for them to get back to school and reply.
Had a call today. Told she will observe for 3 weeks. I have to go in 18 May to chat with her about it. She will write a report and send to surgery. No guarantee it's enough evidence to get a referral.
Has anyone got any advice on how to get school to take it seriously. I feel as if he masks at school to appear 'NT' and like his mates. Yet by the time he gets home he's so exhausted mentally it just all comes out.
This week he's started climbing on the work tops. Kitchen table. Yesterday I unloaded the food shop from the car to the hallway. He ran out the front door and down the road without any shoes on. Screaming like a mad man and hysterically laughing. I got to the carpark. Told him to come in. He got in the car. I told him to get back inside and go to his room. As I am driving away to the carpark he's back outside. I park. Get out and he's vanished. No sign of him. He had run back inside. His dad was washing up at the time and thought he was helping me unload the shopping because once again he is lying. You cant believe anything he says anymore. He was never like this. Even 12 months ago. The change is dramatic.
DH is not much help because he has the same mindset. He doesn't understand why I find some of the behaviour an issue. He's 'just a 6 year old boy having fun' but it's becoming dangerous.
Sorry for the wall of text.

Hi @JS711 sounds really tough and similar to how my 5 year old was last October after going back to school, which we think all stemmed from anxiety. He is diagnosed asd with sensory stuff etc. Have you heard of pda? It's really helped us see that his demand avoidance is due to anxiety at not being able to easily predict what comes next in situations. Things we started doing were stop talking to him in demands, e.g. instead of saying put on your coat, I say ooh I'm a bit chilly I might get my coat, shall I get yours? I talk to him more as an equal than as a child. He gets a treat pot every day after school regardless of how it went as he was trying his best. Things that he does on purpose I ignore or pretend we're an accident. Unsafe things we count to 10 and blow out our anger, then have a chat about it later. E.g. he can just throw stuff when angry but we are working on temper and impulse control. Try setting your DS up with a task or activity first and then going to do your task, e.g. if I have to put shopping away, I give DS his kindle or set him up chalking in the garden. It doesn't always work but it helps. Try to break the learned behaviours by changing stuff up, e.g. my DS kept trying to run in the road when he socially distance visited my parents by their front door, so we did it in my garden instead and he was fine. The best advice I was given was to keep a diary of everything day to day that would suggest additional needs and or asd, e.g. the special interests, different ways if processing information, extreme reactions to routine changes, adaptions you have made everything! E.g. we don't have any cushions or mats because DS is too impulsive with throwing and whooshing them about! It's amazing hw much you're probably already doing but not realising is not typical. Good luck and welcome to the thread!

Ooh and social stories work well for us to help him predict situations.

Another idea is to maybe look for any SEN or autism Facebook groups or other support groups in your area? Often the routes to Dx/help are very different from area to area, so it's hard to know what to advise. Keeping a record of worrying behaviours at home is definitely worth doing. Masking at school is not at all unusual, so I would hope there would be a way to access diagnosis without him having obvious problems at school (though it sounds like he is actually having problems at school!) Maybe you could share some resources with school as they do their assessment. E.g. this article is by Luke Beardon who is a well respected academic in the field and has written a couple of excellent books on autism (one on kids, one on adults).

blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/?doing_wp_cron=1618407884.2124540805816650390625

Another thing that might be helpful is to look up your Local Offer (Google your local authority name and "Local Offer"). You should get a page with all their SEN resources. Hopefully it may include some support networks/coffee mornings or things like that which don't require a diagnosis to access. Other local parents who've been through the process are likely to be one of your best resources.

Good luck (and welcome to the thread!!)

Hi all,

Lost notifications on the thread again

Hope everyone has had a good holidays?

I'm ready for mine to go back now!

DD has been granted respite by social care which is a huge relief. Still waiting for news about whether she will be granted specialist school.

DS ran in front of a swing yesterday, got sent flying and he got up laughing. Massive bruise today so it must have hurt. Their bodies never cease to amaze me.

@JS711it might help asking for a family worker? They see inside the home which can often help. My DD was spotted because the HV was here everywhere for DS

Hi all, how is everyone? We are OK, went away at the weekend glamping, was very quiet and amazing to get back to nature. Lots of forest 2alks with no other people eyc. And so many stars! DS happy to toast marshmallows and fo his camping routine again. Booked to go again in the summer!
Powering through with everything else and getting back to reality today!

That sounds lovely MrsDuBeke. I would be terrified to take ds camping, Fort Knox needed here just in case!

Mumofsend great news on the respite. Fingers crossed on the special school place.

Back to school has been a bit mixed here. Ds keen the first couple of days and then resistant most mornings since though is apparently fine once there and says he's had a good time. I think he just wants to stay at home and play but who really knows, he's not specific. So far he's gone in every day and this morning was not bad at all so I'm keeping things crossed that with a full half term he will settle into things.

I'm expecting a call either today or tomorrow from the mat leave SENco to discuss the annual review which we are hoping to have soon, she called briefly last week to introduce herself. Hopefully she'll have some different experience that will be beneficial.

Oh I know @openupmyeagereyes that's why we stay in a hut with a lock and all sleep in the one bed!