Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

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

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

Great that he's seeing the Ed psych. If school are being difficult just apply for an EHCP yourself. It is harder when children appear to behave fine at school but it can be done. As you say it's clear with the meltdowns at home that his needs are not being met in school.
Do you have a record of him not being in for the last week of term? That would be helpful proof that he's not having his needs met properly.

Yes I will probably have to apply for the EHCP myself I think - but I was under the impression it makes it much harder if the school aren't supporting the application? I feel like they will continue to say he needs no extra support in school and that will scupper our chances. They don't seem to be on board with the whole concept of his needs not being met in school resulting in meltdowns at home. It's going to be a tough fight with them!

The school will have the record of him not being in the last week of term and also the discussions I was having with his teacher daily at the time (plus staff having to pretty much manhandle him in!)

Good luck to your dh for today with the kids, I hope it's uneventful.

My cousin was a social worker (adult services I think it's called, she worked with the elderly) she found something else eventually as she said she hated how everything was determined by budget and she couldn't help in the way she wanted too. Plus all the work piled on her. Must be so difficult trying to do your best when everything has been cut to the bone and you have to do a million peoples jobs on top. She trained for quite a long time to do it aswell which is a shame but she was always so stressed with work!

Liv I hope it's not too hard this week sorting your mums belongings out

Yes it's extremely stressful. At times I've wondered if I can carry on working and managing at home, but I'm part time so it's (just about) manageable. I actually work in a complex disabilities team so feel I should manage at home a lot better than I do, but it's different when it's yours and you're the person in the middle of it all.

The hardest part of my job is the hoops I have to crawl through just to get families one fifth of what they actually need. To meet the threshold things really do need to be dire (and that in itself puts my situation in to perspective) and even then our panel applications are turned down without a second thought. Parents/carers are offered a minimal one-off payment which barely covers anything, let alone a regular break. Even if panel agreed the services we have so little to offer in the area in the way of help/resources that parents would still struggle. It's so depressing. The shining light for me is when I manage to find a placement for a child/young adult that really suits them and offers them opportunities they never could have accessed at home. They thrive, and then the parents thrive from not having the constant, punishing regime of managing highly labour-intensive needs. It makes the job worthwhile (but unfortunately doesn't happen frequently enough).

Thanks danni it's pretty rubbish but I'm managing a bit each day.

That does sound challenging callhim.

Yes it is harder when the school are unsupportive, which is why having written things (like email exchanges about why he's not in school or difficulties getting him in) are so important. You can also put in a freedom of information request if they are being particularly difficult about handing over information. The main thing is if you put in the application yourself if will trigger your local authority to request more information from the school. If you get refused you can appeal too.

Thanks Liv. I clearly need to keep telling the school via email when there are problems. I have a few historic ones but will make sure I record everything.

Hope you are ok, sounds like you're having tough times too

Welcome CallHimMrRaider. That sounds very challenging. I've no advice but lots of sympathy. Definitely put things in writing with the school every time. Who has requested the Ed Psych, is it you or school?

liv yes you can get left handed scissors but most places don't have them and ds manages fine using his right hand. I do a fair few things with my right hand so hopefully ds will be the same. I feel for you going through your mum's belongings, it must be hard

danni we might just about be able to get grandparents to watch ds at home while he watches TV or plays his game but I wouldn't trust any more than that. If he ran off outside there's no way they could run after him. We rarely ask and they don't offer. My in-laws were more willing to watch him while dh and I went out for lunch but when he started school he got really upset being away from me and had a massive tantrum when they looked after him so we could go for a Christmas lunch. They didn't offer at all the next year ! I had started looking on the Bubble app to see if there was anyone local with SEN experience just before Covid hit. I think when things settle down we need to try and get a babysitter that we can learn to trust so dh and I can get out alone occasionally.

That would be nice open to go out. Even just to the cinema or something. I know some special school staff do respite from a particular school near to me, they go to the families houses on an evening obviously the parent pays, but I can't imagine ds school do anything like that, they are so ridiculously prim and proper (when it suits them) Plus his school is 20 miles away from me even if they did, so doubt that would work. But yes the app sounds good so you can check them out.

Anyone else feel like this? I feel mine and dh relationship has massively suffered, we cannot even speak these days without ds kicking off because he doesn't like us talking, then evenings we sit in silence because ds is usually shouting down the stairs to stop talking / breathing or insert some other ridiculous demand. The other night we were whispering to each other, 2 adults sat whispering so he didn't hear us, because we couldn't take another meltdown if he heard us talking. Dh sometimes shittily says let me know when I should book an appointment to talk to you. Asif I can help the situation.

Often these days I go to bed and dh sleeps on the sofa. Sad really, and sometimes (dare I admit this, eeekkk!!!) I wish for a few seconds it was just me and dh again, yes I'm a terrible person we used to wander around a market near us pre ds and we drove past recently, i think ds was hitting dh with a shoe from the back seat and screaming at us both and I just thought I so wish I could transport back to those peaceful days when we actually spoke and laughed and could visit a market etc.

I wasn't suprised to learn a huge proportion (can't remember what percentage) of marriages with an SN child involved ends in divorce!

Don't get me wrong I would do anything for ds, forever and always, and of course I wouldn't change that I had him, and I would always put him first, but I do feel sad for me and dh. We were teenagers when we met and I'm just feeling everything's a bit lost in the depths of special needs, especially lately.

danni I’m sure most parents have wished for carefree pre-dc days at some point. Parenting is hard even without SN which does make things more difficult. It doesn’t make you a terrible person. I miss going for a wander around town and lunch in a restaurant. We could take ds into town, and do occasionally, but it usually involves the toy shop and a couple of quick necessary shop visits maybe followed by Costa. It’s not quite the same! We’re too tired for evenings out.

Friends of ours are having a party NYE and I thought briefly about going but there’s no point. Ds will want to leave after 15 mins and it’s an hour’s drive. We barely see this group of friends any more because it’s just more stressful for us and we live further away. They all have NT dc.

Completely sympathise Danni. I get so wound up at DP not being able to handle DS and me having to sort every tantrum that it makes me really resentful. We’re often too knackered in the evening to talk after getting DS down and sometimes I feel we’re more like housemates these days.

Open, I complained to the school in reception year that DS needed more support. The Senco then agreed to arranged for him to see the Ed Psych. It’s only taken around a year to get the actual appointment

Thanks callhim yeah I'm hoping 2022 is going to be a better year!

We don't have anyone that can look after ds for any length of time. My in-laws can do short periods but he gets very upset if I'm away too long.

Danni there are lots of things I miss pre-kids. It definitely puts pressure on a relationship. Me and dh often just split our time, I can't remember the last time we went out together.

Open sounds like you've made the right decision on the party. It sounds like it would be stressful.

Catching up!!! Hello all and especially welcome callhim. My DS is 6 too and my NT DD 9 so similar ages.

Like Open I’ve no advice as DS is the opposite, much easier at home but really struggles at school in a class of 30 other kids where he is the one who is ‘different.’ At home he is what he is, we are what we are as a family and he finds that easier. What do you think triggers his emotions with his sister?? As opposed to the other kids at school? Does he have friendships there? How is she with him?

The question about doing stuff with other halves is a good one!! I’m an only child so no sibs. Do any of you, could they help (even if just looking after DC at yours??). I do have cousins who will have DS sometimes and maybe meanly I’ve been quite firm with the grandparents in saying that DS is my child but their grandchild and it’s hard for them but hard for us too so we do need a break sometimes. Not often, especially as they have got older, but sometimes. They acknowledge that and will have him whilst we go out, sometimes, also things crop up (appointments and so on) where I have to go and someone has to have the DC! In terms of the nice things it’s More for a lunch or a drink, no big nights, but I try to keep it regular ish or I know it will slip and then we will never be able to do anything which is no good for us and consequently no good for the kids. I appreciate we may have it easier than others, though… the challenge of DS is more chasing after him in the house, rather than any more challenging issues and he doesn’t get upset if I’m not there. I often find bizarrely in the care of a different pair of hands he’s better. So often I’ll say to my cousin how awful things are, she will take him for a day out and he is perfectly behaved. I think often she thinks I’m lying, often I have to film him at home and send it to her so she believes!!

Danni, don’t stress about the diet… it’s really hard and we all have our stress vices (mine is wine and chocolate.) I do avoid the scales and try and go by my clothes. Can’t face the number!!!! 🤣🤣

Open I agree re the party. At SILS on Xmas day I did everything with one hand and the other was holding DSs hand with an iron grip. I couldn’t let go or he would have been running shouting through the house, jumping on everything etc.

A friend said a couple of years ago about her 4 year old oh I’m so glad she’s this age now… on hol (abroad all inclusive) DH and I just have a full eve with drinks and she goes off with the other kids to the mini disco then we go to find her 3 hours later. I can’t even let go of DSs hand in a house ffs!!

What you get from threads like this callhim is that whatever you say no one is shocked and often you get a ‘me too’ then sometimes a useful suggestion. I said something I thought was quite unusual upthread and Magrat I think it was went yep! We have that also!

Sometimes that’s all you need to hear.

Danni where are you up to with the adhd meds?? Are they still adjusting? Have you explained DSs behaviour in the context of whether they need to increase/ alter?? We have DSs ecg in jan so will start after that… will keep you posted.

Evening all, hi @CallHimMrRaider!
We have taken most decs down as we told DS Xmas is over qnd then he got annoyed that the decs were still up!! We're off away for a few days tomorrow as well so good to get them all down before we get back.
We have very little support re: going out as family find DS quite difficult to deal with and I know my parents couldn't catch him if he ran etc. We're looking into getting a regular sitter with sen experience too but it's hard, DS' tas only do it as a pa and I don't really want to go down that route, I only want to pop out for a meal every now and then! DH and I try to do stuff like book a day off just before the schools finish etc. Just before school finished for Xmas, we had a lovely day and stayed in bed all morning then went for a meal out. It was so nice to be just us, we've been together since we were 18, and it helps to keep things fresh! I miss those freedom days sometimes as well, when we could be more spontaneous, but then I remember how sad I was when we had a chemical pregnancy (v early miscarriage) before DS. He is teaching me how to be a better, much more patient, person and he has such a great sense of unique humour. I'd recommend taking a day off work when the schools are back once in a while though! I'm also v much looking forward to my spa day...!
We had a pretty chilled day today, visiting another forest for more running about, and packing. I had an offer of a publishing deal, got v excited, then realised it was a bit of a scam so...never mind, onwards and upwards!

Well we are up

Dh always finishes work mid-December but of course ds was not in school so we got no time alone. One summer he booked a day off before the end of term and ds refused to go into the school building that day. I hope this will change at the new school.

carrie I have two older sisters who had their children very young. I had ds late so there’s a big age difference between the cousins. I was still at home when my nieces and nephews were little and they came to ours all day every Saturday. I used to babysit for them all the time and take them out. My sisters only see ds occasionally despite not living too far away and neither have ever offered to look after him, they are too caught up in their own lives. It makes me resentful if I think about it. Plus they are both smokers which I wouldn’t be keen on around ds anyway.

Magrat I’m sorry your publishing deal wasn’t what you thought it would be.

Sorry for the early start open. Ds thankfully slept until 6am. Don't know why it wildly varies so much with him.

Magrat, I had 2 ectopic pregnancies and a miscarriage before ds, then 2 goes at ivf (ds was the second go) I do remember what it's like. I was obsessed with having kids for years. I'm glad I'm infertile now! 🤭 I shudder if anyone tells me they are pregnant 🤣 Never in a million years thought I'd be glad i couldn't conceive.

Carrie, honestly with regards to the adhd meds, im finding him easier on NO medication. I gave him Xmas eve, Xmas day & Boxing Day off medication, usual stuff with him, but manageable, Xmas day ds was lovely. Dh says it's poisonous what it does to his mood, when he's on medication his mood swings are unbelievable. Very controlling and argumentative. He's like that on no medication but the meds intensifies it all and it all becomes unbearable. Then late afternoon when it's wearing out of his system he goes even loopier. He started medication about 4 months ago, and actually we've had a really difficult 4 months. When I would of expected the opposite. He has another review mid January just before his birthday. I personally don't want him on it but his school are serial drug pushers.

Hi all,

Carrie, not sure what has triggered these problems with his sister. It's been an issue for over a year now. As I said, I think we really start to move in to MH territory with DS (when he's in crisis) and I just hate how there's no support for it. The only thing I could do is get him on a CAMHs waiting list for which there would be a stupidly long waiting list and then most likely nothing offered at the end. Sorry to sound so negative - I just feel so fed up at the lack of support and DS especially needs so much more than what DP and I can do.

We used to be able to leave him with my in-laws but now they couldn't deal with him if we did. He ended up kicking his grandfather last year and then had a meltdown so they rang us to collect him and I haven't tried since. My sister used to help out but that was before her job became more demanding. Agree with Magrat that taking a day off together (or even alone) while they're at school is really helpful for feeling like you've had a little bit of a break.

Liv hope that you are okay and not overdoing things.

My Gran died this morning. It is a relief but I just feel so sad and tired. DS could not seem to process the news he has asked me x100 if her heart has stopped beating (he is obsessed with hearts and has a stethoscope). DD is tantruming a lot today.

Strangely given that I am a lone parent I seem to have more support than most of you. My Mum, my stepmother and my youngest sister can and do manage to take care of DS. I know I have mentioned my youngest sister before - her twins are both Auties and her eldest who is diagnosed dyslexic and DCD is on the waiting list for assessment. My other sister and BIL's boys also have SEN. They are moving closer to us in the New Year and we can't wait. My Mum was a SENCO so between us we have a lot of experience with special needs and our family gatherings are planned based on the kids needs.

So sorry dimples x

So sorry for your loss dimples

So sorry Dimples. I understand totally. My Nan passed at 96 so a wonderful age just after I’d had DD, but she was always the fourth person at our table when I was growing up and my confidante for a long time. I could chat to her a lot more than my parents especially about boyfriends and things. I still really miss her.

So sorry to hear this Dimples, hope you are coping ok

Sorry for your loss @dimples76
We made it to the holiday house!

Enjoy Magrat!!

Hope that you a lovely holiday Magrat