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 ❤️

I'm so tired today it's just the admin juggle, I spent a long time on the phone again today... but thank you for asking I feel so seen 💜 DC1 did really well walking a little bit today - ADHD makes short distances harder for us but I feel proud.

His eating is limited, he currently eats:

Lasagne (but only Tesco’s)
Cream cheese sandwiches
Beans (only Heinz)
Toast (only Kingsmill 50/50)
Porridge (only golden syrup)
Yoghurts (only petit filous)
Small kinder bars

We’ve had some success with introducing fish fingers, using a separated plate, but that’s really it. He’s easy to shop for, at least.

Unfortunately last nights sleep immediately preceded me going away for work for 2 nights, and having to drive 2.5hrs to get here this morning. Shattered, but selfishly looking forward to the uninterrupted sleep tonight!

Nothing selfish about that at all. I've been up since 2.30am myself and I've cried a lot today (also been working) its so hard. You enjoy your

The dietary requirements sounds a lot like my DC1, (plus multiple allergy fun) and last week I cooked a couple of things that are normally "dc1 approved" but were refused for unknown reasons. 🧘‍♀️ Zen breathing.... sending hugs x

Thanks, I do feel bad leaving his dad to whatever these few days look like but I’m sure they’ll be fine.

Working on such little sleep is no joke, and we’re all allowed a cry every now and then!

Yeah that list did used to be longer. He also used to eat shepherds pie, and jacket potatoes, until one day he just… didn’t.

We’ve tried reintroducing them but there’s only so much peeling mince off walls I’m happy to do, and refusing one meal usually means he won’t eat the next one put in front of him, so we have to choose between him eating what he’ll tolerate, or not eating dinner.

A million percent this. i have to find specific brands, and stick with it, if they change texture or anything I'm screwed I try to stay chilled about the food situation, any calories is a bonus (for DC, opposite for me haha) x

I tell myself when I’m making Philadelphia sandwiches for his breakfast that fed, is best 😂

That's really good re walking - with the walking, is it the not knowing what's coming next?

I feel like life as a sen mum is a lot of making phone calls 😄

❤️❤️

Oh bless him - the tesco only lasagne made me laugh, im the same, there's a huge difference 😄

Does he see a dietitian?

You're definitely definitely not selfish! Can't believe you managed that drive, hope you have the best sleep x

Dc1 gets really fatigued, and also poor impulse control (roads, hazards etc) and sensory sensitivity to temp, light, noise, busy places...all the things involved in being outside. I can't even begin to explain this to NT people (no judgement to them, it's just I have had a lot of well meaning advice which bears no relationship to dc's abilities....even today someone talked about building dc1s tolerance, whereas what would actually happen is that we'd end up in over stimulated, dysregulation hell for 3 days and nights, when I'm a single parent with a younger DC and no support system, so people give good advice I just can't take (I'm singing that last sentence Alanis Morrisett style 😅)

I've learned the hard way 🫠

Absolutely, bless him - you're doing perfectly!

😄 well meaning advice from people who just don't get it is like - thanks but it's a no 😫

Thanks 😊 no, we waited months for that initial appt (was last June) to be told no urgent need to do bloods and it may traumatise her, and were given an appt for the following (this year) June. It's hard also as her Dad, my DH is saying there's no need to get them done and making me feel bad about it saying she'll be traumatised (we don't exactly have a great relationship these last few years unfortunately). So I'm questioning myself and wondering what actually is the best thing for her. Hearing/reading other's opinions and experiences is very helpful. Thank u all

I ve done lots of investigations/urine/blood/stool tests… 90% of those I went privately as they were specialised tests (I.e Methylation test, OAT , bacteria etc) but I found some reliable/affordable labs to go to

one thing you ll find if you want to go down that route and dig into the details behind the developmental delays , is that you’re on your own; you won’t get much support even within the family, as they just don’t understand how all these work.

Being persistent , and researching how the body, gut, brain, neurotransmitters, methylation and metabolism works, will give you strength as it ll give you knowledge for you to pursuit again and again and again till you get your needs met! It also gives you hope …..

X

I’d say, while advice might not work for your DC, neurodivergence is such a vast spectrum, it may work on other DC. There are 5 ND members of my family (and MIL, most likely the 6th and the source of it, deceased), and they all present very differently. Even within ADHD, DH hyperactive type versus DD2 inattentive type versus DGD combined type, are quite different (and they all have autistic traits, probably in DD2’s case autism).

DGD got to the point, she was so terrified of hand driers, they could barely leave the house. DS tried increasing her exposure to them, starting at a warning and 8 seconds. Gradually, he got her used to them, that now they are not a problem and they can go out again.

Ok

Sorry to hear about your dh - maybe the stress of sen parenting is affecting you both?

Honestly it lasts a few mins so I don't think she will be traumatised for life, but the short term impact could be stressful for you all, so completely understand you taking your time to decide ❤️

Hi all

Im feel like im going through hell and back atm. Not sure i feel comfortable giving full details on an open forum but I was faced with a very unfortunate incident a couple of days ago that could of had severe consequences if the outcome was different and its sent me spiralling. My ocd is in overdrive! Trying to deal with this and then ds not sleeping and lashing out is causing such stress. Its causing issues with me and dh as im so low and if he leaves me, I dont know how I would cope alone. Sorry for the vent but I guess you ladies are the only ones who would get it.

Solidarity @Helplessandheartbroke - my DC did something unsafe a few days ago and I keep thinking of how bad an outcome it could have been if things had been different (and I don't even have OCD!) Lack of sleep is a killer too.

@RavenLaw thank you for understanding. I wish I felt ok sharing as its hard to explain. Not something dc did but something, somehow was placed in my car and I've absolutely no idea how, who or why this thing would have been there (im being genuine its a complete mystery and has knocked me) hope that makes a little sense.

@Helplessandheartbroke don’t beat yourself up about it … crap are happening all the time, nothing awful happened, totally ok, we learned something new and move on 😍

try if possible to be as non-emotive as possible, see perhaps if you can increase some sort of protection/safeguarding to ensure it doesn’t happen again, and all is fine

we re here for you if you need to talk, be as cryptic as you wish x ❤️

Thanks @BrentfordForever ill pm you later if that's ok.

Life's hard enough looking after our dc without added stress isn't it! I hope youre well

Ofc my dear !

im ok! DS has been sick all night so no school …. Its NOT great having him around all day 🙄

@BrentfordForever thanks so much, yes, I've done a bit of research into all of that (it's a constant process though isn't it!) and I am eager to get her tested. I think it could give us knowledge and hope as you say and maybe even find things that would help her. Have you found any supplements etc useful have you tried leucovorin and/or were able to get that test done?
@mumofoneAloneandwell thanks so much, yes it definitely has taken its toll on us both. However I'm the only one really researching, finding schools, therapies, small bits of funding, supplements etc. Even down to clothes (she was a very bad smearer for a while my heart (and nose!) was broke) and toys etc. Really wish if he wasn't going to do these things I'd at least get the support when I have and think a certain route eg blood tests is worth going down. It is what it is unfortunately.

Hope ye both are well!

😄

Oh bless him, there's a horrible bug going round - how's he feeling now?

Dd has finished school for the week, so tonight is my Friday night. Gonna try and tire her out so I can have a cheeky glass of wine