Auties transition to Year 1 - thread 3

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in reception year at school, going into Year 1 in the autumn. All welcome (also parents with older or younger children who want to ask questions or share their wisdom!)

Welcome!

They are discussing Beth on Radio 2, her father has just been on.

Hope DS is feeling better today open?

Harley - are there any autism parenting groups in your area (maybe if you check the Local Offer page for your local council?) Parents might be able to advise on which schools are flexible and supportive in practice?

I can see why schools are negative in advance due to budgetary pressures (I hate it but I can see why), but the thing with your DS is it really sounds like it probably wouldn't take a lot for a school to be able to manage his toilet issues pretty well: he just needs prompting and encouragement doesn't he, and a routine put around it - and not to have a big fuss made when there is an accident? They are probably scared of that but if they actually had him in the school I'm sure a lot of schools would be able to find a TA to take him to the toilet every hour, and then gradually try to extend the time.... I can't remember, does he have a 1:1?

We had our Early Bird again this morning. Started 30 minutes late (which meant there wasn't so much time for parent questions/comments, which is usually the more interesting bit) and then was pretty content-light (basically an entire 2 hour session on visual prompts). Quite useful for the school I think but we've tried lots of visual prompts and DD has never really taken to them. Oh well. Hopefully next week will be more interesting!

@openupmyeagereyes i would have to ask them if they would be willing to do so.

@lighttripper he has to be taken and talked though the routine. School will tell him to go but not have the staff to actually go with him and tell him what to do. Theres also alot of we can't tell him only advise him they say they wont make him do anything. The school say they are paying for a 1to1 as they are unable to meet his needs without it but then said to LA in the next sentence that they didn't feel he needed a one to one.

I am going to email and tell them that we till take ds everyday but if he is sobbing and won't go in without being forced in we won't leave him as its not good for his mental health and he isn't going to be able to work properly in that frame of mind. That we won't no longer let anyone drag ds into school as it isn't good for ds us or staff invovled.

Light sorry EarlyBird wasn’t helpful this week. We had a session on visuals too, I suppose they are very helpful for many children but ds has never taken to them either. He is verbal but the specialist teacher wanted to use them to help promote more independence. Frankly, he just ignores them when we have tried so we don’t bother. Maybe at some point they will help as a checklist.

We’ve had 3 hideous nights with ds waking roughly every 60-90 minutes. He’s going back to sleep but it’s very disruptive and we can’t always go back to sleep. When he wakes he can be agitated from a dream or some memory that’s been bothering him, he might come into our bed for a cycle or go downstairs on the sofa. Dh thinks it’s related to his cold/bug but I fear it isn’t. He’s obviously a bit under the weather and he’s not eating much but otherwise he doesn’t seem that ill. He’s certainly been worse and his sleep has not been like this. He’s been off the melatonin for a couple of weeks because it doesn’t seem to make much difference anyway. We gave him some last night and it was no help. I really hope it settles down soon

Open sorry to hear of such disrupted sleep. That is very tough for you all. Quite sure you'll have tried every possible permutation of sleep ideas, but we recently came across one new one to us - a compression blanket. DS loves pressure so says it feels like a massage.

The 60-90 min wakings sounds like waking at transition points between cycles?? (We had horrendous sleep issues when DS was much younger but nowadays things are immensely improved other than early waking).

Harley hmm ... your school sounds unclear what they think your DS needs! but surely if DS's plan says he needs taking to toilet each hour and gentle encouragement this proves the school is right that he needs a 1:1? How else would the school provide the hourly support for this?

Re refusal in mornings - have you ever tried staying with him in the classroom to settle him? Our school didn't like this idea, but once they saw how significantly it helped DS get off to a good start, they asked me to keep doing it. Our routine now is:

Arrive at school via front office 15 mins early, to avoid playground and get into classroom when it's quiet.

Routine on entering - bag/coat/peg, homework book to teacher. Then I sit with him at back of class away from carpet and keep him focussed with a quiet colouring sheet featuring his special interest topic.

Once rest of class settled on carpet we join them at back of carpet in DS spot, I sit behind him hugging and massaging.

Plan is to gradually gradually reduce my time present from 30 mins to 5 mins

MapLand that’s exactly what it is, he’s waking after every cycle. Goodness knows why. Ds doesn’t seem to crave deep pressure so I don’t think compression would work for him, he won’t even use his weighted blanket. Thanks for the thought though.

I’m glad you’ve got a routine working to settle ds at school. Hopefully the gradual retreat approach will work.

Wondering if those of you with dds have seen this? It’s called Autism in Pink and was on the NAS channel.

m.youtube.com/watch?v=E-FvExDAqh8

@mapland in reception i used to do all of the sort his routine woith him put reading books homework book where it needed to be then sit im on carpet with what ever morning activity it is. Sometimes he would settle straight away sometime he would cling and say i need to talk to my mummy.
once they went into year one we are not supposed to enter the school each class room has a door to the yard which is where they go in. This morning he was clinging and crying so a let him continue to watch pokemon on my phone then walked him though class his teacher sorted his book bag, change bag and dinner bag out i helped him take his coat off sat him at his desk his teacher got his milk and i got hims set on the task he was set to do he picked yellow as its pikachus colour now he wasnt fully settled was still clearly upset but was far better than them haveing to man handle him of me while he screamed and sobbed. I didnt give them the option to not allow me i just did it, Also was a bloke in class with a visitors badge on that watched all of it and then demanded the class sen folder. I havent a clue who he was but he was certainly watching us.

clinical lead of bowel and bladder phoned me to say she was concerned his soreness was due to being in urinated clothing to long or strong acidic wee and the fact he has cleared and not had hardly any accidents shes leaning towards him being in is wee soaked clothes to long and said she will speak to his incontinence nurse and things will get sorted at his next meeting.

Harley I know the school don't welcome parents in class but I think well done on you for settling him this morning.

Hope you find out who the visiting observer was!

Ds has gone into school today. We had a better night. Ds slept through until 2:30am which is better than the shenanigans of the previous 3 nights. Dh and I were in bed at 8:30 so got around 6 hours sleep despite the early start. As they say, everything is relative...

Glad the sleep was better open though I also hope it returns to actually decent soon! I feel bad moaning about the Early Bird. It's not that it's a bad course (though a bit dated in some of the language etc) - but more just frustrating because it would actually have been properly useful when we were first told DD was likely autistic. Even the visuals stuff would have been useful as we did try it (on the advice of our ABA person) - but you shouldn't have to be paying for ABA to find out about visual supports.

2.5 year later although there are useful tit-bits it feels a bit "old hat". It's interesting but more in an "academic" way than feeling it will have much positive impact on how we parent DD. I do think it is helping her TA/the school though, and it's nice to compare notes with the other parents (who all also seem to know a lot already: nobody's got anything "wrong" in the various little quizes they set to try to ferret out misunderstandings/myths so far).

I think if resources are constrained it would actually be better to have a shorter course (maybe even a single day, so you can just take 1 day off work) offered a month or two after the child is put on the diagnosis pathway (as I understand that nearly always results in diagnosis: and even if it doesn't the child is likely to benefit from a similar kind of understanding re: sensory sensitivities etc. and an educated set of parents/carers). And then maybe another day just before or just after they start school, accompanied by somebody from the primary school, specifically to discuss school/educational issues... And probably another one in the lead up to secondary, to help prepare for that (with a representative from the next school). Ah well. When I am Queen!

I had seen that autism in pink video but a while ago when everything was new and scary - might have another look!

Interesting about the observer Harley. I hope it means the school is being kept a closer eye on. It's just so frustrating when everybody else seems to be "on side" but the school are the ones with the day to day influence on how DS experiences school. I get that it is hard without a 1:1, but couldn't the class TA do it in the interim? And in any case it's a good reason for them to be pushing hard for 1:1, not trying to get in your way.

Your routine sounds great MapLand. I wonder if there is a good resource anywhere with lots of ideas for supporting transitions at different ages? It would be so good if there was...

I have had a email of school saying that walking ds into school and settling him breaks safegaurding and that i shouldn't have took him to hang his coat up as they haven't got staff on the corridor. I asked why it is such a issue in year 1 if it isn't in reception class and pointed out that theres plenty of staff chatting on the corridor. I didn't make a nuisance or even talk to any other child. I took ds in Hung is coat up and sat him at desk calmed him down and helped him get onto his work then came out i was there 5 minutes max. Also they weren't happy ds wouldn't let go of my phone he was watching pokemon on. Hes apparentl had a good day to which i asked how can they say that when he had 5 wet and 4 dirty accidents. When friday saturday and sunday he only had 2 wet 1 dirty across 3 days. I haven't been responded back to.
Hes also come home wet and dirty today as well.

I’m sorry Harley. What are you going to do next? Have you spoken to a governor?

We had an excellent night. Ds woke at 12 and 4:55 and needed a cuddle to resettle but otherwise he slept from 7-6:30! Dh and I were both in bed when our alarms went off at 6:30

He had a good day at school yesterday despite his early start and a lovely play date at our friends house after school.

@open we have another meeting with school la and sendiass on the 18th am just waiting to hear if they will do the ehcp then can decide where to go next.
Got another email of the head last night at 8.30 saying that the school refusal is a new problem which it isn't its been there since middle of reception juat grandually got worse. They also won't have that its school refusal that is seperation from me apparently and that today they will have staff waiting to take [my son] name edited by MNHQ at his door. They are alao saying its all our fault. I won't allow them to drag him in again.

Glad your ds slept better and had a good day at school yesterday. Hope fully he has another good day at school today

Harley you mentioned your son’s name in your post. I suggest you report to MNHQ and ask them to remove it.

open glad your DS had a better sleep and a good day yesterday. I started watching the Autism in Pink but DD kept interrupting so will save it for another day. I used to read Purple Ella's blog a lot which is about autism in women.

Light I like your ideas for the new Early Birds course haven't actually done the 'old' one yet. Need to ask someone about it, maybe Senco.

Harley can't help but thinking 'bullies' when I hear the sort of things the head at your school comes up with! Unbelievably unsupportive. Sorry things are like this hope you find a way forward soon

Mapland thank for sharing your routine, sounds great.

I'm currently trying to get DD into school (she's having 3 minutes of Peppa) to calm down. She doesn't want to go. I've got work in an hour's time. Gahhh!

@openupmyeagereyes thank you hadn't noticed have requested they remove it.

Purple Ella has a really good YouTube as well. New video every Friday! I started to watch the Autism in Pink video and realised a couple of the UK women are now very active in the community: Helen Lewis works for NAS now and Robyn Steward wrote the book about periods for autistic girls that just came out. Funny to see them younger! Will try to finish watching at lunchtime.

So glad you had a good night open!

I don't know what to say about the school Harley. Glad DS has you in his corner.

Very difficult morning getting DD to school, first day back as we had an inset yesterday. She spent the last few days saying she didn't want to go back to school and despite all out pep talk and discussions about what she likes and doesn't like, she was crying on and off all morning. I was just debating (with myself) whether to drag her in crying or not when we bumped into neighbour and her DD as we left the house. Neighbour asked DD if she wanted to walk to school with them and this made DD stop crying and we all walked together to school. DD clinging to me by classroom door but manged to hand her over to the teacher.

I will see how today went and how tomorrow goes but if she is unhappy I need to speak to Senco. I worry that a if DD is being dragged to school crying in Reception, it might create an even more negative feeling towards school and we have along journey ahead of us. I think I need to have a plan B and C too. maybe smaller school, maybe independent or other.

Do you know how she is when she's in Little? Hopefully if she has a good day that will defuse things a bit for tomorrow.

DD was always teary at drop-off in Reception - at least until Christmas she had to be kind of peeled off me, but she'd still say she'd had a good day at the end of the day. It improved over the year.

Things that I think helped were:

• having a specific TA whose hand she would hold while she waved me off in the playground (needed this until Christmas - after that we'd look for a TA in the playground so she knew where somebody was if she needed them, but she didn't need to hold their hand).
• doing a "hug button" (www.huffingtonpost.co.uk/entry/hug-button-parent-and-child_uk_59c1179fe4b0f22c4a8c7c0b)
• having a very regular routine (high up hug, low down hug, silly wave: we still actually do the silly wave even in year 1 - I think it helps her to be silly when she's feeling emotional/overwhelmed - gives somewhere for all that emotional energy to go if you are waggling your fingers and sticking your tongue out saying "blah blah blah")
• Going from there with the TA to a playground activity (they have things like drawing and sand and stuff set up in the playground), so she was occupied until it was time to line up and go into the classroom.

I don't know if any of that is stuff you haven't tried yet? I've also read about transitional objects being useful - but I was always a bit scared in case we/she/school lost the transitional object! I did wonder about shiny pebbles, as you can buy those in big bags and DD loves rubbing shiny things.... but we never needed to use that in the end.

If she's finding school itself hard too do you have a helpful SENCO/TA who could help you work out triggers? One thing I know DD does is eat lunch really slowly (she is always a slow eater but I think particularly in school) - which means she is still in the lunch hall when everybody else is tearing around the playground, just chatting to the dinner ladies while they clear up. I think it's an important decompression part of the day for her.

This is also in a v. small independent school (only 60 kids total) which is I'm sure helpful from a sensory perspective (though means we have a school change coming up at the end of next school year (Year 2) which I am not looking forward to!)

Thanks for sharing your ideas Light your DD's school sounds like they gave been really supportive with helping her on arrival. I will ask Senco if someone could meet DD but so far we get 'brushed off', with but DD is doing so well, when asking for extra support at the beginning of the term.

There are 60 kids in Reception alone and the same in Y1 and Y2 so I do think it might be a bit of s busy big school. The Senco 'hides' or quickly moved to other area when she sees me When I met with her prior to applying for this school she seemed do supportive and switched on but maybe my emails and worries in those first few weeks means I'm now that difficult parent to be avoided.

We put her favourite soft toy in her bag as her transitional object but am thinking that a hug button might be better.

There are no TAs in the playground (or any staff for that matter) and we drop DD by classroom door. I know it is possible to enter via library so will see what can be done.

Apologies for typos

Sorry, I didn't actually answer your first question Light, so far DD has been happy when at school and the teacher (at parent consultations) said DD had surpassed her expectations in the first half term. The week before half term is when DD began to complain in the mornings and she kept repeating throughout the break last week that she didn't want to go back. I think the novelty gas worn off or honeymoon period is over. Need to collect her now, will see how the day has gone.