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 ❤️

@LizzieW1969 rant away! There is a lot going on wow! Hope the epilepsy is under control? xx

@mumofoneAloneandwell hope you’re ok?? Tell us when you can x

@BrentfordForever Thank you so much. DD1 had a tonic clonic seizure in the car on Christmas Day, 2024, and had a few absences in the 6 months before she started medication for it. I’ve realised that she had absences before this, but we didn’t recognise them as such. She has dizzy spells sometimes, too, as well as weakness and nausea.

She can’t take the full dose of medication, Levetiracetam, because they make her manic, she realises this and doesn’t want to try again. We therefore want to discuss changing the medication, as her dizzy spells and weakness affect her at school sometimes.

But I do realise that, thankfully, her epilepsy isn’t as debilitating as is faced by other people I whose experiences I’ve read about since we started this journey with her.

She also has suspected FASD (she’s adopted, as I said earlier in the thread) and traits of autism and ADHD. (We’re hoping for a more definitive ND diagnosis.)

She has a lot of issues with food as well.

How are you feeling? I'm sorry its taken me so long, ive been decompressing!

How is he feeling? You say hes adopted so is that causing him some problems as well?

Is he depressed at this point? How is he surviving if he isnt on any benefits and is out of work?

Has he looked into remote working? Call centre stuff just for the time being?

He's still young though - can you focus on getting him into stability before deciding on anything else? Agree that things can't continue as they ar now 🥺

@BrentfordForever how did the first day go? ❤️

My dd decided that today was the day she was going to truly embarrass me 😄😄😄

1. Tesco - kept on taking her croc off and throwing it in the air. Lay on the ground refusing to walk - ended up being dragged out of tesco wearing one shoe, crying for her donut which I didnt buy

1. Smyths - was fine because we were buying sand and a bucket and spade

1. Sainsburys - I chased her around that shop for 15 mins. I lost sight of her twice, she was bolting in between aisles and up and down

Several people helped to find her, i was screaming her name. I had to ditch our shopping to chase after her.

Its our local sainsburys and we literally cannot not go there

People were giving me looks and I felt like the worst mum ever

Gonna have to use the child tether next time we go shopping.

🙈🙈🙈🙈🙈

Then I had to wait at the attached argos for her sand pit that I bought - the wait was forever and the security were giving me looks 🙄

Major roadworks trying to get home

So that's it. Embarrassing day 😄😄😄

I've spoken to an Educational Psychologist today about getting DS some further assessment - school/CAMHS have suggested it's worth looking into autism and/or dyspraxia, and, although frustratingly I've lost the original EP report he had at primary school, I'm sure she mentioned the possibility of linguistic processing issues being in play, so I mentioned that to her as well.

I'm not sure how a further dx might help at this stage - maybe more exam access help, for example? And dyspraxia might show a more specific learning difficulty so maybe DH can understand a bit better what DS' limitations might be.

Thank you for answering. It was good to get it off my chest this morning. His adoption causes him no issues personally in that he’s said that he has no interest in his birth family. He says we are his parents. I know he loves me because he told me that the gift I had at Christmas showed it!

Obviously there are issues with being adopted such as trauma and the suspected fasd but he’s very happy chatting away in his room all night, playing games with people. He even watches films with other people. Sometimes he goes to see a band play.

My parents left him money in their will which I would have kept from him if only for a few years. Not sure if that’s legal but my brother wouldn’t have allowed it and he had access to the executor account.

He also has worked in the school periodically and they would give him a job if he asked. This money enables him to buy toiletries etc and I buy his food. If I didn’t, he’d just use the chip shop every day, if I mention that it’s not good for his mental health, he just says - Mum, don’t worry, I’m happy.

Sorry, I feel I’m just waffling on now! I have a friend who works with NEET young people and he just won’t engage. It’s so frustrating. I got him to college as he listened to me when he was younger but I can’t make him do anything work wise now. If he wasn’t vulnerable, I would insist he had to get his own place (I think I would anyway) but I don’t think that would be good for him. I don’t think anyone can help really but thank you for listening. It makes me very low and I worry how he will cope without me when he’s older.

Oh and he doesn’t like talking to strangers on the phone!

Thank you ❤️
Hope it ended up working out. At least the bacon has good protein 😂

Dd went to school today and had a huge meltdown, she did not want to go in. So I took her home 🥺

And that's it, shes not going back!

Wine for me tonight. But its tinged with sadness. Why did she get so upset. What was happening at that school that I wont ever know about? 🥺🥺

But - its over and done.

How are you all? 😄 all this girl eats is sugar and protein 😅

Going ok. Although somewhat scared of these next 2 weeks off for Easter 🙈
How are u all set for DD finishing school? Hope it makes life much easier for ye ❤️
Yes, with mine it's sugar and carbs - she loves mashed potato so meat and veg get mashed up in it and covered in gravy 😂

Phew, just got an email to say school is moving DS down a set in maths. He was doing pretty well until this year 60%+ in tests but the pace of the higher set was just too fast and he was only managing around 30% on tests so I'm hoping he can get back on track and take maths off the 'worry' list

That's great news @Echobelly g

• glad they've listened, and done so with a bit more time until exam period x

Yeah, I'm relieved. They have 'one year to go' tests over may and June (with one next month) and its quite daunting. He's going to have to start revision this holidays and then it's not really going to stop until next summer 😥 He'll likely end up having to retake a few ',one year to goes' at the start of next year, but even if not I think he'll need some practise over summer.

It's occurred to me we could ask DH's nephew to do some maths tutoring over summer to shore up the stuff from the first two terms that might have moved too fast for DS. Nephew was looking to do tutoring and he and DS are very fond of each other so it might work well.

Truly horrendous day today.

We collected DS from school early, because he was distressed and unwell. We called 111 who said he needed “urgent medical attention,” so urgent that an ambulance and out of hours GP wouldn’t be quick enough. Take him to A&E, right now, and tell them we sent you.

2hrs in a side room later, DS was having a completely expected meltdown and the doctor finally comes in. After he’d already arrived at the level of distress that involves hurting me and his dad. Which isn’t a problem in this context, but considering how rarely he does that now was an indication for us of how upset he was.

The doctor refused to examine him. Said that the problem was behavioural and not medical, and that we should take him home. When told we had real concerns about DS health he said “what would you like me to do, he’s not going to allow me to examine him.”

I explained, at length, that the symptoms we’d seen weren’t how my son would express behaviour. Apparently he “sees kids all the time, it’s autistic behaviour.” Nevermind our 9 years of raising that specific child.

So now we’re at home. With no further information, and a takeaway on the way despite having started a diet yesterday.

Very, very frustrating.

So what will happen to ds? Is he better now?

You poor things, a takeaway is understandable

What was wrong do you think? ❤️

He’s developed a whole face twitch, and keeps rolling his eyes all the way back into his head, losing focus and can’t be brought back to attention while it’s happening.

They’re roughly a minute apart, and are upsetting him afterward.

111 were concerned (rightly, IMO) that its seizures of some type.

We (luckily) have access to private medical care, so our next plan is to use that for investigations. We’re going to reach out to his assigned NHS paediatrician too, and obviously put a complaint in about today.

Today’s doctor honestly stood at the door and looked at him from afar, did no actual tests, at all.

Hopefully we’ll get further with another doctor, but shouldn’t have to.

Sorry, I’m aware I’m ranting!

No you rant as much as you need to

Once you feel able, please complain about that doctor. I know its tougher dealing with our autistic kids, but that's his bloody job, to figure out what's wrong when they can't tell us 😡😡😡😡

Do keep us updated, i'll keep ds in mind

And I imagine he will be like this throughout the night, i hope that you and dh will be able to get some rest?! And is he still lashing out at you both? 🥺🥺

Youre doing amazingly ❤️

That could be good for ds, to have help from a tutor - could put him at ease as well, having someone close to his age who has been there x

Ohh okay - he is year 10 age? Gosh back in my day we'd have module exams, in January and may/June.

Yeah its a slog. Especially this summer where he will still be waiting for the exams to come.

Does he get extra time and support for his exams?

He’s calmed down a little now he’s home with his favourite film on in bed.

The combination of his irritation at his face, and being stuck in the same room for 2hrs was just a recipe for disaster.

I know he’s a tough one, particularly when he’s distressed, but I do expect him to at least be looked at!

Agree!

I had a similar issue when dd was poorly - turns out she'd fractured a tiny bone in her ankle and couldn't tell us. So stopped walking completely

The first doctor completely dismissed us 😡

I'm glad hes calmed. How are the symptoms?

Of course, its a nightmare going to a&e at the best of times, let alone when hes already distressed and poorly. Recipe for disaster- but you did the right thibg, if 111 are saying a&e, you do get concerned xx

Hey, sorry im just catching up best I can, I've been so poorly this week!

@SleeplessInWherever that's very poor from the a&e doctor! Hope youre all ok.

@mumofoneAloneandwell sending hugs, hope you and dd are ok x

I am sorry!

Does he live with you?

Honestly, he is happy which is a big positive. And young people make crap choices with their money and over food, that's very typical tbh!!

I understand the worry 😟 - but theres time The main thing is that he is living. How is his socialising outside of gaming? Could that be the thing to work on?

I love that he shows you that he loves you! And that hes okay with his adoption journey.

Sorry I didnt respond before, I thought that I had!