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!

Littleswede ds is just like that with his food he eats it too quick and doesn't chew it, he rammed loads of cucumber in the other day and started silently gagging until he was bright red when thankfully he got it up. I panic every time it happens.

I've sent his pack lunch today, all his cherry tomatoes cut into 4 same for his strawberries, i haven't put a banana in because he gags a lot on bananas. It does worry me. I'm always telling him sit still chew it properly etc.

And no your not one of those parents! And even if you were, you have good reason.

I think we probably worry too much about being "that parent" though. Better that school know what we are thinking and worrying about than moaning without telling them: if some of them aren't great at communicating back (hard stare at Harley's DS's school) then at least we've done all we can.

Our head actually wrote in the start of term letter to encourage parents to call the office rather than each other (which is a bit annoying but a bit legitimate: school is not great at communicating, particularly when things are going a bit wrong - but on the other hand some of the parents are MASTERS of getting their knickers in a twist over nothing on the WhatsApp group...)

We left the house to go to school around 9:40 but then had nearly half an hour messing around in the grounds at the front with me and the TA trying to persuade him before he finally went in.

Apparently there are a handful of them struggling today so he’s not the only one, just the most stubborn one probably.

Little Sometimes there are issues that need to be raised with schools. There will be other periods where things go smoothly so try not to worry. I’m sure they have worse with some other parents. We have had incidents of parents arguing in the playground in front of children, speaking unpleasantly to staff, parking issues etc. I’m sure these things are more tedious for them to deal with.

Thanks everyone, I think I was friendly and polite in my email and also positive about how well DD is doing so hopefully it was taken the right way.

Openupmyeagereyes good news that he went in though. Lots of children struggling in our school playground this morning. Many in tears outside classroom. Yesterday I saw a little boy trying to run back out through the gates!

Danni does your DS have the 1:1 in the lunch hall too? I watch DD like a hawk when she's eating. Nursery were really understanding and her Key Worker often sat with her and there was always an adult at each little table. So far DD has opted for jacket potato every day which I feel is a relatively safe bet but at some point she might decide she wants something else. On her first day us parents were invited to have lunch with the children, DD was too excited to eat much and was mostly flapping with excitement .

Littleswede he has 1-1 every minute he's at school. He's a total danger to himself so he has to have it. They told me he has to have arms length 1-1 which is true at home also. X

danni Sounds like the school is really supportive and understanding of your DS's needs. I tend to follow DD around in the house and we are always at arms length when outside the house. In a way it as easier when she was in a buggy as I could prevent her from running into roads etc much easier. Bought something called an Adventure Belt which is a rein/belt for child which is attached to a belt which the parent wears. Haven't actually worn it yet but it might have to replace the buggy...

Spoke to the teacher to explain about DD's lack of awareness for danger and loosing concentration etc. She said it was good to know and they are going to encourage DD not to climb the wooden frame or the ropes (she had another injury slip today as she hurt her arms rolling back and forward over some ropes...) and instead she can use the 'roly poly' (as Dd calls it) a sort of body roller so she can get her sensory stimulation. They will show her lots of fun things to play with in the play ground that are less of a danger to her. Will make a list of things for the review I think.

Hope everyone is having a good day!

@openupmyeagereyes i am glad you manged to get ds into school today.

@danni0509 i have been though his report and out of the 7 elg they all say ds has got the expected level of development for this area yet 5 of them in the what ds is working on have targets from 30-50 months and 40-60 months the other 2 are wrong as the indecate ds can do full toileting and understands everything.

Ds is now wetting in school today over theast 3 days hes been changed in school 14 times. Oddest thing is hes not really soiling or wetting at home now but also refusing to do his toilet routine. Hes very angry tonight as well and keeps choking on food. Also complaing his leg hurts and was complaing this morning his jaw hurt. He was up nearly all night again last night.

Generally things are going okay here. Toileting seems to be getting worse and worse now - can't believe that we had 5 months without an accident last year, it seems like a distant dream. One of the most frustrating things is that in the last 7 days DS has soiled himself at school x4 at 12:30 - this is when his 1:1 is on her lunch break. At every meeting I have had with the school last year I stressed that I felt he needed more support at lunchtime, grrrr. Other than that DS likes his new class but misses his Reception teacher. I used to speak to his 1:1 most days but the way Yr1 go in and out of school there isn't much scope for that.

I'm still recovering from my broken ankle and limping after my boy who has a tendancy to run off is not a lot of fun.

Danni I'm so glad that your boy can do full days now - what a battle you have had.

Little ‘Yesterday I saw a little boy trying to run back out through the gates!’ Sometimes that is us!

Hopefully they can offer your dd some extra support at lunchtimes.

Harley I hope you had a better night and that ds gets back to his toilet routine soon.

dimples I’m sorry that toileting is still deteriorating and that ds is not getting enough support at lunchtime. Does someone cover his regular TA for that period?

Ds spent more time in the reception garden yesterday, he’s really struggling with this change and can be so stubborn. Apparently his class has a new TA starting who has an autistic son just graduated from uni. Hopefully she’ll have some good ideas to help ds through this tricky time.

I had an unplanned chat with his teacher last night as I was at the school for an information evening and the garden thing aside he said that he thinks ds has made a great start.

Our OT did a VMI test (The Beery-Buktenica Developmental Test of Visual-Motor Integration) this week and ds scored on the 16th percentile which she didn’t think was too bad. Average is 50%, normal range between 25-75%. She said his score should improve over time. She’s not been able to do this before as his pencil control was not strong enough so in itself that shows he’s made progress.

A flurry of messages on WhatsApp last night because the children did not have their reading diaries. They are being assessed this week and getting coloured stickers in said book bags according to their reading level. People complaining that their reading books aren’t being changed daily. One parent said that the previous teacher used to give them four books at a time because she ‘knew they read a lot’. It was all a bit 🙄 but I know part of me is just a bit jealous.

Reading diaries, not book bags

Littleswede ds is unbelievably good at dismantling things so we have had to ban any tents with poles
Hope your ds has a good full day today.
Ds is another one that needs constant supervision, particularly when out. We bit the bullet earlier on in the year and bought a maclaren SEN buggy. Best decision we ever made. I feel a bit sad that it does make ds look obviously 'different' but it has saved my back and means he is a lot less stressed when we go out.

Dimples sorry to hear you ds is having toileting issues again. It definitely sounds like he need better support over lunchtime. Hope your ankle is feeling a bit better. When will you be out of the boot?

Open well done for getting ds in.
WhatsApp groups are the worst, I just have to ignore about 70% of the messages on ours as they just don't apply. Hope you have an easier morning today.

Ds's teacher and TA were really pleased with him yesterday. His 1:1 had an emergency and had to leave early but ds coped fine. He was building blocks with other kids and they put his work on the class display table. He seemed pretty chuffed with himself.

Ds slept last night but is refusing to eat this morning. Also tlld me he hasnt had a drink all day yesterday at school. In reception class they were given drinks at regular times across the day. In year 1 they are expected to get a drink ds wont and when asked him why he didn't ask for one he said i don't know.
Hes at hospital this morning for a heart appoiment he will be in school late today.

Harley do you have a contact/support person at the LA/SEND (not sure the correct term for this, in our area there are is a communication and autism team as part of the SEND department) who could come and observe your DS? He is obviously being really affected by the utter lack of support from the school. Hope you have had a better night. I'm only at the beginning of this journey of getting support in place but it really sounds like your DS should have much more appropriate support.

dimples hope the school can rearrange the lunch time support so your DS doesn't have to wet himself. It's good that he likes his new class. Can imagine it being a challenge to run after DS with a broken ankle!

Openupmyeagereyes I resisted the Whatsapp group for a long time as I would imagine it will make me go too at times. I did join it just to be kept up to date with the factual stuff and so far it has been mainly information and no discussions. Will see how long that lasts!

It took me so long to type up that message I now see there's been updates since I started.

Hope appointment goes well Harley and good to hear your DS had a good day livpotter.

Finally Friday!

livpotter I've been contemplating buying a McLaren Major for ages. We've been using a Silver Cross (I think it's called zest) but it is too small now. DH often carries DD on his shoulders but she's getting too heavy and his shoulders, back and knees can't take it.

DD went in ok this morning but it's the first full day so will see how she copes!

WhatsApp group drives me mad here - I have had to mute it. I did consider leaving but didn't want to flounce off! There is a lot of not so stealth boasting. Also I feel like some of the parents have very unreasonable expectations about what school should be doing, e.g. putting more effort into tracking down their daughter's unlabeled jumper. Can be handy for practical stuff though

I'm walking in trainers now but I use a crutch on the school run as it's on a v steep hill.

The other kids in DS's class all came out proudly showing off the models they had made. DS didn't appear to have made anything and came out carrying a letter re SALT. Sums it up really!

We've been given an A4 sheet with guidance as to how the Whatsapp group should be used. There are three bullet points outlining what the group should be used for and seven pointing out things it shouldn't be used for, such as discussing specific individuals etc. Can only imagine what sorts of discussions must have been happening in past years for the school to issue this to all parents

Our WhatsApp was set up by the parents so I don’t think the school would have a say.

liv well done to your ds for coping with change and good, cooperative play.

Harley I hope the hospital went well.

Little I hope dd copes well with her first full day.

danni how was ds’ first full day?

dimples we don’t get many pictures or models either. Yes to the WhatsApp stealth boast. I do try to ignore it most of the time. It’s quite funny, one of the mums will message me on there but in person doesn’t even give me eye contact. Bizarre. Thankfully, most of them are friendly enough.

Ds went in ok this morning. A bit of faffing and delaying tactics en route so we were a few minutes late but that’s not too bad. I am dreading hearing that he’s again insisted on spending half the day in the reception garden but at least it’s Friday

Thank you @LittleSwede and @Openupmyeagereyes.

I am unsure how to say hospital went. Ds was discharged back to gp. Ecg was normal and they say his heart sounds normal but ds still complians of a racing heart. The main pediatrician refused to let the consultant order another test he wanted to do on ds heart so he told me hes writing to gp to keep an eye on ds and if it continues to refer for the test. He didn't say what test.
They also discussed all the pain ds complains of and he examined ds and said he very elastic which orthopedic doctor said last year. Ds screamed out ow though out the examination specially when he moved his hips. Also ds legs didn't seem to move when he used the reflex hammer on him ds shouted ow at it though. The consultant said i have to go back to gp and request to be sent back to the orthopedics as ds is a very interesting case he can't figure anything out as ds reacts in ways everyone else doesn't and that ds is impossible to communicate with. He just said he doesnt think any majors going on as ds had blood test at beginning of 2018 that came back normal.

@livpotter glad your ds had a good day yestersay.

@littleswede we have had a sendo in before for ds she was just all about disproving everything to save money and going on about the lack of funds available all the time.

So glad we dont have a class whats app. School wouldn't do anything of the sort here school hate parents talking to each other.

Is the pain consistent with Ehlers Danlos Harley? It seems to be very common among a lot of the autistic vloggers I follow and I think there is a proven link statistically between the two (though I don't think anybody knows why!) DD is hypermobile but other than "growing pain" type stuff at night sometimes she doesn't seem to get too much pain, so hoping it stays that way. I think she's more hypermobile than I was at the same age.

Our class WhatsApp is generally OK. There is some slightly weird stuff where somebody says something and then the whole thread goes silent for a while because nobody knows what to say. But generally it is used when school fails to communicate something and everybody says "wtf?" and then one of the parents with older siblings at the school explains and generally people calm down :)

People can be extremely entitled though. I try to just roll my eyes and smile: I can't imagine having enough time/mental bandwidth to get excited about some of the things people do! But then I know I can get wound up about things other people probably consider ridiculous (I hope I have enough self-awareness to generally keep it to myself most of the time though, or just vent to poor old OH!)

Be back on later when ds has gone to bed. He is in such a foul mood he's just screamed his lungs out for 40 minutes straight.

Just a quick question, how much homework do you get now in yr1 we have had quite a bit in his book bag today. Daily spellings, writing and reading books.

They can't win! last year I wasn't happy he didn't get it this year I'm at expecting him to do it

They did say he needs to try every night but no worries if it doesn't go to plan as they know what he's like.

Speak soon. X

danni we got our first homework today, it will be every Friday for completion by Wednesday. We will have spellings, a maths exercise and a writing exercise. They are also expected to read at least 4 x per week.

I had asked the SENCO if we could have differentiated homework but I don’t know if this week’s is. I suspect we will have him try and do as much as possible but we will have to do most of the writing.

Today I caved and ordered the oxford reading tree books from book people. We’ve already got the songbirds set. In the past he’s not been keen to read them with us but at least we will have them ready for when he actually starts reading. We haven’t had any books from school this week.

Harley that sounds frustrating. Is the heart racing anxiety do you think? I hope you can get some answers soon.

Light, I agree that some people seem to get worked up about the smallest things. Same with MN really

Ds had a better day today so I’m very glad. His morning TA came out to speak to me at pick up and said she will try to when she can (she’s in another class in the afternoon). The new TA started today and seemed to be good. Hopefully I’ll meet her next week. The plan is that she will work in yr1 now and then split across reception and yr1 (presumably when the class/ds(!) has settled down a bit).