Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

I learn so much from this thread every time I read it.
After a challenging awful weekend, today has been great/depressing in equal proportions - had a child who actually came out of school and spoke about their emotions and what happened in school. This has never happened.
In hindsight, lack of separation anxiety at new school (noted by the school) and ability to verbalise feelings makes me feel awful that I didn't realise how previous schools handling of situation contributed to anxiety. Why on earth didn't I realise and move schools sooner?
This thread helps me to understand that it's all learning and not to catastrophise mistakes but it's still really hard.
Thank you to all of you who have shared experiences to help those of us who aren't as far along in the journey. You are bloody amazing and probably saving my sanity right now.

@StarDog it sounds like you have got the school right now though, that’s brilliant.

@dimples76 at least he shows some recognition of what is socially ok, it’s really good he has no accidents at school and when out. DS came home with 4 wet pants from school on Friday 🥲. I remember at his old school a TA observed him standing in the playground wearing shorts and he just weed. He made no acknowledgement of it, it was like he had no idea what he had done. No acknowledgement of the wet shorts or the puddle. Really how do you train a child like that???

@ahna68 i think the mainstream v special school debate around ‘autism’ really doesn’t turn on the child being autistic because as we previously discussed you can have 10 autistic children all presenting completely differently. I think it is more about the presentation of the child and to a lesser extent the MS school. A child presenting as non verbal, or with significant anxiety, or with significant behavioural issues does not in my experience fit the mould for MS and they will do their upmost to squeeze them out. A child (who is autistic or otherwise) who just needs ‘a bit of extra support’ may actually do ok in the right MS. Interestingly at DSs old school LDs weren’t really relevant. Provided the child was speaking, able to communicate, behaving, not having too many meltdowns and not weeing their pants 4 times a day it was absolutely fine, they were just given work years behind their peers and the school waved the ‘we support SEN!!’ banner loud and proud.

I do think to a much lesser extent tho it depends on the MS also. We have the lovely little covered in Ivy Mallory towers style primary which looks wonderful. Reality is they wouldn’t know sen if it hit them in the face. But then a TA at DSs current school said to me the other day that he had just moved from an inner city MS primary which was more sen than this sen school in his view!!! Highly funded, highly experienced staff.

Yes @carriebradshawwithlessshoes , exactly this. The autistic child of friend of friend is speaking and has been since a young age, toilet trained, etc.. For DD it’s a totally different scenario (at least right now, I know things can change). I think DH is a bit behind in educating himself on autism, it took him longer to agree / accept the signs, so we aren’t necessarily on the same track of acceptance and I guess I can’t blame him for that

interesting talk re toilet training. We haven’t even tried, no signs of readiness, but DD is not at all bothered either by being wet. Even when it’s also cold. So yes makes sense that will make things harder when (if) we do try.

@ahna68 i think they mostly do get there, but it’s all around routine/ taking them at particular times and then them just accepting that that is just the way it is. DS was diagnosed a while back with an overactive bladder which I don’t think helps. I also think the typical taking them all the time or them weeing in pants/ pull up all the time doesn’t help as it doesn’t strengthen the bladder. Bladder strengthening is key (according to the urologist DS saw)

dimples hope you're feeling better today. Glad that your dn is doing better but how awful for you all. Poor kid.

carrie I think that inner city schools are often better at dealing with SEN because they have far more behavioural issues than a naice school, it's therefore just part and parcel of what they do. The more pupil premium dc there are, the higher the funding.

Ahna your dd is so little yet. I think more will become clear as she turns 3 and 4. What age do they start school in NL? FWIW my ds is much more obviously autistic now than he was at 2. His traits are much more pronounced, he stims a lot more etc. etc. As they get to 3/4 onwards it becomes much clearer what are toddler behaviours and what aren't. NT kids make a huge amount of progress in that time in language and social development. Your dh has some time to get on the same page as you.

Hi @openupmyeagereyes yes agree DD2 at 2yo very little yet. DD1 is 3.5 and as you say, much more obvious that her development is not taking the normal path, I start to notice more and more that other people notice too in the playground or whatever. We haven't seen much improvement in the 2-3.5 period but who knows, maybe steep improvement before 4.

Usually they start when they turn 4, but think it's only required at 5. But DD1 will start the SEN school whilst still 3 (think that is just done differently to the MS system)

Ahna sorry, I was getting your dd’s mixed up then. I would have thought they started later in NL, but it’s the same as here it seems.

Yeah @openupmyeagereyes same or in some cases even earlier (because of the 4th birthday starting system).

Change of topic but does anyone have any advice on fussy eaters?? We've tried giving her loads of time to explore / play with the food, only putting a tiny bit of a 'new' food out, etc, but it is just so hard to get her to eat more than a handful of foods. In particular struggle to get any meat / protein into her diet (other than crushed nuts into her breakfast). I feel like I'm not doing well on this, she doesn't really have a healthy, balanced diet.

Ha, not me. We’ve had this issue for nearly 7 years.

@openupmyeagereyes , argh, it's so painful ! Do you give DC a lot of vitamin supplements etc? Atm I'm just doing a multivitamin and vitamin D, but not sure if I should be adding to this...

I give a multi vit and omega 3 directly (both liquid) and I mix iron & vit c drops and probiotic into food.

Can I ask which omega you use Open? Do you notice any difference if he doesn’t take it (with the other stuff). We got quite an expensive omega but it just seemed to make DS mega hyper. With anything tho you just don’t know if it is that or coincidence.

sorry I can’t help Ahna, DS loves to eat anything and everything. The one issue we don’t have! Only one tho!

@ahna68 no advice I’m afraid, my ds is on nutritional shakes, he was losing quite a bit of weight not eating (he takes medication and it affects appetite) then the fussiness we have had forever on top of that, he has 1 shake a day now, 300 calories in each one, we get them prescribed, (you can buy them too) they have all the nutrients in and are high calorie, then he usually has a chocolate biscuit, 2 x Nutella on toast, a yogurt and some fruit a day. That’s it, he doesn’t eat meals, just snacks. The Nutella although not healthy I know, is v high in calories, 1 teaspoon has 80 calories so he has 2 tablespoons a day on toast just for the extra calories. Ds loves fruit weirdly though! he eats grapes, satsumas and blueberries every day.

The dietitian refused ds referal as autism tends to come with a ‘restricted pattern of eating’ so they don’t take children with an autism diagnosis. Arsewipes!

@carriebradshawwithlessshoes I think your ds has barely been at his school any real length of time (2 or 3 months?) so I would not really expect anything in terms of progress just yet. First 3 months in ds special school they practically spent scrubbing his shit off the furniture and on the phone to me 🤣🤣🤣

Ds started his special school 18 months ago and his teacher did say in the May he started, (when he realised how naughty he was lol!) that he thought ds was probably going to take a really long time to really settle in. Only really now would I say he’s settled in a year and a half on! He would do no work at all when he started they were just trying to get a handle on his behaviour, he does do work now.

Ds school do this thing at school, preparation for adult hood, they learn skills, cooking / cleaning, out in the community, paying for things in a shop, getting on the bus and paying the driver etc etc, each term it changes. This week he’s been making smoothies and peeling potatoes. They sent me a photo, he’s got a bag of potatoes and a potato peeler making mash with his class. Bless him.

carrie it’s Efamol DHA drops. We’ve used a few over the years based on availability. He’s been on them for years so I don’t know what he’d be like off it.

Thanks @openupmyeagereyes

danni love all the things ds is doing now

Aww @danni0509 that's so lovely to hear about your DS. DS' school do a similar thing with preparing for adulthood, its great I think.
DS has a fairly restricted diet, he always eats the same breakfast and lunch, and he won't eat anything mixed together. Try maybe separating out things? E.g DS eats his version of spaghetti bol which is meatballs and spaghetti separated no sauce! He also has a multivit every day and eats a fair amount of fruit. He's recently been trying more meals at school...though mostly because he wants the dessert!
We are pottering along, I'm counting the weeks till Xmas now and the end of the dark nights but can't get too excited in front of DS because then he'll get waaaaaay too Xmas ready too early! I'm seeing my favourite singer ever soon talking about his book so I'm trying to focus on that first!

Thank you for that carrie
*
Open* amazing about putting the drops in food! So obvious but never even thought of it as wouldn't work in drinks (DC will only drink water) I've tried the granules which dissolve in food but they were pretty much spotted everything. Off to search for drops!!

I stand by my statement that the knowledge shared here is invaluable. It's humbling that although everyone is dealing with their own shit every day, they still take the time to post advice to those just starting the journey.

Awesome thread and awesome people. Thank you all.

StarDog natures aid do the mini drops. If I were you I would start with a tiny amount and work up to the full dose gradually. Hopefully that way they don’t notice the change in flavour.

Hi everyone, I'm semi new as I posted for the first time at the beginning of October but haven't posted since However, I've just had a read through the last few weeks and I completely agree with StarDog post above

Thank you to the person who mentioned Gorilla Gym, the swing looks really good - is it easy to spin around on it? The video just shows swinging back and forth. My DS has been having some OT sessions (he loves them) and he spends ages spinning around on the various swing attachments that she has. I would love to get something similar for home - and with Christmas and birthday coming up, now seems a good time to look into it.

There was some chat about toys/play a few pages back and I've forgotten it all (despite having just skim read it ) Anyway I was thinking about a Squishmallow (am hoping DS might squish that instead of his younger sister, am I being over optimistic?!) does anyone have one?

It's great to read about many of your children doing better in the right school or getting a special school place... with some exceptions, I can't remember which poster it was who said that school were reporting a decline in behaviour "out of nowhere" but had not been doing regulation breaks?! #facepalm!

dimples how is your nephew now? Sorry it's been such a stressful time for you and your whole family

In fact that’s good advice for adding sauces to food too. It’s how I got ds to eat sauce on his pasta. I started off with adding a teaspoon. I think I got that from the food chaining book.

Thank you Open.

Hadn't heard of food chaining, OT only talked through SOS principles, so off to look that one up tonight as well!!

Namechange spinning is a bit limited on the gorilla gym because you could smack your head on the doorway. We do have a hammock that we attach to it but you kinda have to make sure nothing is sticking out!

My ds also loves spinning and this has been amazing: https://www.tts-group.co.uk/mini-balance-spinning-top/EY05221.html?gclid=CjwKCAiAjs2bBhACEiwALTBWZblRMtKPboVpm8EOKu-a3XiljEwg-RH90TQxL2HdTvASxJVCob-fhoCkB0QAvDD_BwE&gclsrc=aw.ds
My mum bought it when he was a baby and he still uses it now at 9!

Eating is still an issue here too. Although he randomly asked for a baked potato with cheese the other day!!! Apparently he 'eats it at school'. I always find it miraculous when he suddenly decides he will eat something other than the standard stuff.

Sorry a bit behind on catching up. Hope everyone else is well!

Ooh thanks liv. I think I’m going to get ds one of these. They have them at school.
www.tts-group.co.uk/giant-balance-spinning-top/1003014.html#

livpotter thanks for the link, that does look good! I see what you mean about spinning in the doorway. I guess you'd need a safe and stable place to install a swing more centrally away from door frames and walls. Did anyone watch "how to build a sex room" on Netflix?! I need a "hard point" in the ceiling... but not for a sex swing! Ah if only we had the time and energy for that 🤣

Changing the subject (!) there was some chat about swimming a while back. My DS seems to love playing in the water and was obsessed with the pool on holiday but was kind of manic in there - I think it actually stresses him out. I really want him to learn to swim, had a failed attempt to get him to do swimming lessons at the start of the year, but he did join in with swimming lessons at school, thankfully, and I have now managed to take him to lessons in a small group but the parent has to get in, which is a pain, but at least he's doing it. It's always a struggle to get him to listen and follow instructions but if he does some of it that's a win. I did wonder how on Earth he is at school if that's how he is during a swimming lesson. But I just met with the SENDCo who observed him in a lesson and said that she had no concerns about him whatsoever, he sat still, listened, followed instructions, did the work... I half expected it tbh because they haven't raised concerns and I've concluded that he's an expert masker. Of course I am grateful that he is managing and even doing well at school - given what some of you have to deal with - but it comes at a cost to him; his behaviour at home and most importantly his well-being. He says he hates himself most days He's 5.