SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

Hope all okay @mumofoneAloneandwell

Sorry I’ve not been around much, we’ve had a fairly rough few months.

Behaviour is absolutely off the scale, and just feels constant at the moment. Trying to just “pick our battles,” but there’s too many to choose from. Sleep isn’t great, been up since 1:15am and he’s still going now.

To top off the “spike” we’re in, we have to move house (not optional sadly) in the next few months and I already know the impact that will have on him, his behaviour and how unsettled he’ll be.

In the trenches at the minute!

Yes, her diet is very restricted, there are very few things she’ll eat. No fruit or veg at all, though she will eat cucumber with cheese. She will occasionally eat omelette, bacon, rice and cheese, pot noodles. She has at various times eaten spaghetti on its own or rice and bacon with cheese.

She will sometimes eat these these foods but then refuses.

The only food she’ll eat consistently is snack food like Pringles, Quavers etc. She eats breakfast egg muffin with cheese every morning.

So yes, her diet is very limited and she’s overweight as a result, with poor health. So it probably is the anaemia that makes her dizzy, though we did previously wonder whether it was part of her epilepsy, as flashing lights cause it and she has photosensitive epilepsy.

Thank you so much for your interest, it’s appreciated l.

Hi there, my now 35 year old son who was diagnosed with Classic Kanners Autism way back in the day was non verbal until he was about 8. School wise he’s never been to one and I just took him through the day teaching him how a day was lived. When he started to speak it became obvious he’d been soaking up information like a sponge and he never ceased to amaze us with what he knew and I’ll never forget driving down the road with him and hearing a voice in the back of the car saying - parachute man falling down from the sky. And yes, there was. Anyway, my son eventually went on to be able to read and write as well as count and do simple arithmetic but if anyone had told me this would happen I’d have cried because it seemed so unlikely. Please don’t think your child isn’t learning from you, you may not see any sign of it today but you will one day when it’s least expected. I still think about the day I realised my son had been soaking up information like a sponge over the years but just wasn’t able to show us.

You’re doing a great job ❤️

Hi there, I’m wondering if your DS is going through a seasonal change due to the change in the seasons. It’s a very real thing and it’s something that affects my son.

My son now has additional Dx’s on top of his original one but his reaction to changes in the seasons has been a constant throughout his life. It is however now worse than it was before due to his bi-polar disorder.

eta - for my son it’s not about the difference in routine that people assume causes it - it’s about the difference in the light, the wind, shorter daylight hours etc even though we live in a country where winter just means it gets dark half an hour earlier than usual. He also reacts when we are coming out of winter into spring.

Hello
Hope it's ok for me to join
Finding this thread a bit late in their education,but I've two with autism both have /had EHCP ,one goes right back to when they had statements before CAMHS was created .one is an adult and one a late teen

Will catch up this evening ❤️❤️

Hey @SleeplessInWherever - not at all, just pop in when you can ❤️

Sorry to hear ds is being challenging - must be something in the air, my dd is misbehaving more than usual here

Bless you all - could it be that he's recognising that the summer is coming, the changes at school as they wind down etc, as mentioned above?

Whatever the cause, I can imagine youre just exhausted. What does he do when he wakes up at 1? Will he lay in bed next to you with his tablet, or is he up up, wanting to jump around?

Is ds your only?

❤️

Thank you @CreamolaFoam26 🥺🥺

How amazing of your ds! And 35 years ago, I can imagine just how much tougher it would've been to parent him! Good for you for homeschooling him as well, it seems like it was the right choice

I feel like dd was really unhappy at her old school and i failed her. I shouldve pulled her out sooner 😪

Homeschooling now isnt too good, but i'm doing as youve said and taking her around experiencing life! Going to the shops, making a list and paying

Cooking

Using her text to speech tablet

I think its going in! Not much more speech yet but defo echolalia 😭 bless her

Whats your son's life like now? ❤️

Edit, just reread your above post - so he's got a bipolar diagnosis now? Is he your only?

I imagine its not the easiest of journies but him being able to put his feelings into words is so good x

Welcome @Pinkpug7 🙂

How are they doing? Have they an idea of what they want to do after education? ❤️

Took dd to the Emirates stadium today - i think she knows that she 'supports' arsenal 😄

I fully intend to take her along to the parade. Its a big risk, at aged 7 with autism, but even if we dont last long, i want her to have that memory 😬🥺

Oh bless you’re arsenal (spurs here !)

she ll love it take her , has she been to any games ?

sending love sorry haven’t been around x

One has exams at the moment,at-home ,so very stressful having invidulators in the house .. especially when they don't seem to understand the concept of exam conditions

Thats okay ❤️

I wouldve thought that the photosensitivy would be a thing as well 🥺

Bless her, her eating sounds so familiar. My dd is only eating tiny amounts right now

Rice with curry
Noodles
Pot noodle
Fried chicken

This is down from a longer list!

It definitely must be causing her anaemia! Does she take supplements as well?

The thing is, shes dealing with so much, I bet youre grateful she eats what shes eating!

xx

Hey Brentford! ❤️

Yeah we're arsenal - the atmosphere locally is lovely honestly!

She hasn't, although i have tried - its a very confusing process to get tickets!

Not at all, how are you all? xx

Oh i didnt know you could do that! How amazing an adaptation - yeah i can imagine re exam conditions! 😄 xx

No easy feat
Huge battles to get
But then everything is isn't it x

Wow, it sounds like you’re having very similar difficulties around your DD’s eating. And yes, at the moment I’m simply glad when our DD is eating something. Although we are concerned about her teeth, as she mostly refuses to clean them and the dentist has expressed concern about the state of her gums. She’s also become obese, with BMI just over 30.

She would never take any medication before, either in tablet or liquid form. But, as she’s now taking her epilepsy meds as well as the iron, we might be able to get her to take supplements as well. Vitamin D was recommended recently, thinking about it.

Thank you so much for your interest, it’s really appreciated.

Vitamin D can be taken as an oral spray if that’s easier.

They tried that on DD1 (with LD), but changing the physical appearance of tablets causes her consternation, so they had to go back to her familiar turquoise tablets after about three weeks. (This was at a residential college). Recently the GP changed her iron tablets from brown to red - weeks of hysteria over the “red tablet”!

I think my dd tried to make me breakfast in bed this morning!

I'm sitting up and suddenly shes sticking a sausage sandwich in my face, trying to make me eat it 😫😫

The sausage was whole and the sandwich smothered in ketchup

😄😄 🤷‍♀️

Was it yummy?? xxx

He can't seem to do anything with pictures, he won't even make a list of things he can see in the picture, because he doesn't see the point, I suppose, even if you explain it's so you can say something about each thing.

Just despairing right now because looking at History revision notes and he has History next Monday and it's tonnes of stuff. I have absolutely no idea how to help him with this or with either of the 'Englishes'. Advice online is all like 'How to get a high scoring essay' and I don't want that, I want 'How to write the simplest possible essay that will get a pass mark'.

I hear about parents who spend GCSE year working 1:1 with their kids on GCSEs and I feel shit and selfish because I just can't do that. I don't have time to learn myself what they need to do and I always found stuff intuitive at school so I can't explain things to others and, awful as it is to admit, working with DS is so frustrating, it's like getting blood from a stone to it's just a boring, dispiriting slog for everyone.

Sorry for the rant - I feel like a bit of a fraud here when many of you are facing much more profound struggles.

Pls can I ask , is this more about weekend studying ? Is he actually on stimulants then?

Thank you for the tip, it’s definitely something to look into. Although it’s likely that she would worry about the taste, that’s always an issue with her.

I can’t imagine well imagine your DD1’s consternation over a change of colour. Difference in size can be an issue for our DD1, she wouldn’t take a 500mg epilepsy tablet because it was ‘too big’. The GP surgery agreed to prescribe her 250mg tablets instead, which she’d already been taking.

It’s so tricky, isn’t it?

It's any time really - he doesn't usually take meds at weekends or holidays, but it doesn't seem to make a difference with the tough subjects. I was reflecting today that when he has a set task for revision and knows what to do, he does it. eg with 'closed question' stuff like maths and science he will apparently work quite hard at it, like today he's been telling me a few times 'I want to do some more maths'. Because for that they're set a load of questions online and he can work through those, even when there's lots of them.

But like anyone, if he doesn't know how to do the thing, he's going to have trouble starting or sticking at it.

Yes we have the same , but when he’s on stimulants he overcomes his fears and he’s trying bit more

if you get same response with or without meds perhaps he needs a meds review . I’ve seen it myself when I’m on adhd meds I’m on fire, zero emotion just 1000 tasks a minutes , no matter the complexity

since it’s gcse related you might want to get those meds checked x