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 ❤️

Yes @BrentfordForever hope it helps, honestly I bet it can't come quickly enough! ❤️

Pda is Pathalogical demand avodance, iirc

I wonder whether my dd has it - also need to sort an adhd assessment for her 🫠

Thanks op how you feeling?

I'm okay @Helplessandheartbroke , just deep cleaned my kitchen so feeling on top of the world 😅

Dd is quite happy, not long left of school for us, not sure if she understands bless her

How are you doing, how's ds been?

@mumofoneAloneandwell argh a nice clean and tidy kitchen is the dream! Doesn't last that way for long in my house. Well done!

Im up and down a lot lately but the lack of sleep isn't helping 😪

Pathological demand avoidance....(or another word beginning with A that I can't remember rn I'm so tired, my DC is still awake 😞) "aversion"?

I should know really! think I did know haha

So like I can't say "right 5 mins and we're going, socks and shoes, now please" that would cause PDA meltdown that could last a day or more- I have to do lots of work arounds: "ok your socks are here", and NT families mean well but mistakenly think it's a discipline issue (the school included!!!) but it's actually anxiety and loss of control and discipline is not the solution - at least not punishments in the usual sense

Sorry for the long answer xx

@Tiramisuforone thanks for explaining it sounds tough. Hope you managed some sleep.

Ds slept on and off and so did I. I feel exhausted but school and work call!

Yes PDA is similar to ODD

first is more I can’t , latter more I won’t

when DS is in meds there is 0% of that otherwise it can be hell !

morning all!

Morning 😒can't explain why but im feeling very sorry for myself today. Banging head prob from lack of sleep. Worried for ds and one of his TAs is off so wondering how the others will cope. Just feeling very fed up and anxious today

Yup, we've spent years figuring out what work arounds DS can tolerate. He's MUCH better now he's older (recently 14) & understands time sensitive situations (being places where time isn't negotiable) & those that are more flexible. It helps that he's got really into karate the last 3 years & we need to be on time.

We've worked out a routine that suits him: leave shoes/ toothbrush/ meds on the stairs & he goes himself to do all of that - his choice. We're still needing to dress him as he prefers it- choosing our battles.

Lots of reminders in advance about things happening & times does also help hugely, as well as everything being his choice (ie because most things he really does want to do, so the 'choice ' suits him). Even saying 'You think about that and let me know if you fancy it' or 'We need to do this sometime today, if possible, you decide the time.'

It's taken years, but we can see he's way less anxious.

@Puffalicious great advice !

it really is about tweaking our approach , warning before hand and asking rather than demanding

something else I learned that helps both my kids is …. Whispering the ask/task!

still draining though 😂

I hear you my love !

deep breaths … he ll be ok!

perhaps researching some of what we mentioned yesterday (around looking at health areas , blood tests ) might help occupy the wandering mind ?

bit of a shame we can’t support each other face to face 😫

I've got a call on Wednesday with peads i was going to mention it. Im trying to stay off the Google rabbit hole. It is a shame but MN does help especially when you can speak to like minded people. I've asked about genetic testing previously but they said he didnt need it as hes clearly autistic... I can only ask.

I pray for the day he can speak. I know it still clearly comes with challenges but I feel it would be so much easier. Its a constant guessing game now and the guilt if you get it wrong....

Well done @Helplessandheartbroke for booking it !!

what we got in the past (both NHS and private but we do have a very affordable private lab near us ) is: iron, vitamin D, b12 , white/red blood cells , vitamin A, inflammation markers and definitely thyroid

i ll ping you privately for other stuff x

Il just wanted to pop in here because I know you guys will just ‘get it’ and I have no one in real life who seems to be able to.

I feel like I’m drowning. So much so that I don’t even have the energy to write out here everything I’m trying to cope with, trying to juggle work with caring for DS2, appointments, meetings, my own MH.

Its just…so much.

Now to dry my eyes and get back on with it.

I must try the whispering, see if it helps!
Silliness helps here. If things are fun/ silly he's much better at getting going. And lots of praise. It's really like managing a teen who's sharp as a tack, adult in height, but is emotionally about age 7.

We forge on!

Ha!
I noticed the other day when I tell him off , I don’t look down anymore!

😂

I feel a bit sorry for myself today, another SEN mum irl said my DC1 is PDA because i've been home ed....dc's home ed because of the PDA (and SEN) rather than other way around...I just felt like she'd get it, but alas no, I only mentioned it in passing that we'd had a hard morning. DC's actually much much more settled 😰 the sen struggle feels like 50% of the hard work is the judgement rather than just the juggle of sen mum life

Sending hugs 🤗

@BrentfordForever that'll be helpful thank you. I mither peads I won't lie. There's no other support available though.

@Rinoachicken when youre able, do you want to tell us about your situation? Its so hard.

@Tiramisuforone not nice of them and a bit judgy? Sending hugs

Oh well, as they say, when you've met one autistic child you've...er...met one autistic child. But it's amazing how alike rude judgemental people are!

DD is diagnosed PDA and has always been educated at school.

I didn't "make" her PDA.

She and DH clash like anything, often when she's behaving rather like him 😂.

I think the main thing at the moment is, me and DH both work full time, (he’s a social worker, I work for the NHS), DS has ASD and LD, is in specialist school. No transport (too close). DH and I juggle the school run between us, and DS used to go to a specialist after school club one day a week which really helped with my work commitments.

Except he broke his arm there a month or so ago, there were lots of safeguarding failings, LA investigating etc. Absolutely out of the question I would ever send him back.

But work (or rather, my manager) are now putting loads of pressure on me to provide a long term solution. Lots of not so subtle hints and comments, I’ve been trying but there is not alternative provision. No family around.

I’ve spoken to the Trust HR/equality and diversity lead and he 100% has my back, the trust has staff carer policies in place that protect me, but it’s the emotional burden of the battle I know is coming with my manager.

And the is at the same time as a hitch stakes EHCP review this month as well, and trying to support DS1 (also ASD) through his GCSEs (stress is starting to get him).

It’s just…alot

I've come across many a person who is against home ed to quite a vehement degree, but usually mums who have had to navigate things just get that life doesn't always look Insta perfect, it's no judgement on her, I only mentioned it and that was the instant reaction, I get that all children are unique, SEN or otherwise, I am just tired today

@Rinoachicken sorry im not familiar with all abbreviations, whats LD please?

Im in a similar situation with school and wrap around (sorry to hear about the recent incident) my ds is at a specialist, I chose to do school runs and have agreed with work because the transport is truly awful (horror stories heard re chaperones etc). We have no local holiday clubs for SEN kids unless they're toilet trained etc or one that's miles away and costs more than I earn. Stick to your guns at work, putting pressure on you as the mum of a disabled child is shocking and im glad youre protected.

@Tiramisuforone I honestly dont understand how anyone can judge someone for doing what's right for them and their family. Ignore them and have faith in your decisions.

I was hoping to be feeling better as the day went on but im having such a bad time atm. I never suffered with MH until after ds was born and being a SEN mum brings so much more added stress and pressure. I've cried a couple of times today. Any words of wisdom to help me snap out of this....

Wow! That is a lot!

can you move to a different dept/boss? Is it a very specialised thing you do?

funny how my SIL works for NhS and has an awful (female) boss….

is DH a social worker seriously ??? OMG do you ever yell at the kids in front of him? 🫣
jokes aside, that’s a hell of an interesting job! Do you discuss his work with him quite a lot?

I know it’s hard and crap, you’re truly amazing for doing all that !

@Rinoachicken what's LD please, apologies x

Sorry it really does sound a lot. I find it awful that staff in the NHS itself have such a hard time with stress when trying to deal with family illness

I'm sorry, I typed this ages ago and then got distracted by dd

Love to you, its tough