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 ❤️

Glad it was a positive day other than the idiot Seawolves.

DS went to his happy place of seeing the alpacas today which was lovely. He has a lovely bond with one of them so it’s one of the few places he can go where he is really relaxed.

Some people are so ignorant. I've had someone say 'once he talks he won't stop be careful what you wish for' im like i would give my right arm for him to talk so f off! Seriously ignorant people.

Im having a really hard time with my MH atm and I've just sat and cried for 10 mins. Ds would not leave me, just sat and cuddled me! He even wiped my eyes! He made me cry more! I didnt know he would even be aware I was crying! He's now lay next to me in bed and keeps putting his face to mine. This child of mine is truly amazing.

@Helplessandheartbroke people say the wrong thing a lot of the time, because they don't know what to say. Doesn't make what they say right though.
It's amazing that your DC is communicating such empathy and love towards you, being verbal would make days like yesterday less challenging, however his affection when you needed it shows how much he loves you.

We had a really tricky bedtime after a good day, I don't know how to tackle the hitting (only 5 so physically it's not a concern but I don't want it to continue). Other than that we had a really positive day

@Whydidyougothere is your dc verbal? I saw your post about not wanting to leave the house, some days are so challenging.

I couldn't believe the empathy hes showing me im lost for words explaining how big this is. The trouble is I dont feel I deserve this perfect little human to love me so much. Im so grateful he does though

@Helplessandheartbroke yes he is fully verbal, it's part of the reason I don't feel like I should find it so hard sometimes.

You do totally deserve him! You have modelled that to him and shown him what love, empathy and compassion is and without even needing words he has shown it back to you. Yesterday was hard for you both, but he is showing you that he sees you caring for him, showing him such love and care that he wants to give it back to you.

@Whydidyougothere our challenges may be different but they're still challenges none the less.

I've got myself really worked up over a couple of bad judgements i made re ds which is why I feel I dont deserve him. Some days I grieve a life I wish we had but tonight him doing that, I wouldn't change it

omg! What a twat that man is!! Some people just don’t think before they speak!

well, we have to be up at 7 at the latest tomorrow morning. I am hoping dd goes down before midnight but predict I will be up at 2/3 am

💐💐 to all doing our best 🥺

Ditto and ds is wide awake! How you feeling about school this week?

Thank you for starting this thread! So many things written here that I completely recognise and identify with!

I have a 6 year old DD with ASD, ADHD and SPD. She is verbal but a GLP - so a lot of scripts here too. She’s brilliant, but 6 years in and I’m still
struggling with acceptance - I hate how hard she finds most things and wish I could make it easier for her and selfishly, I struggle with the limitations her needs put on our life. But I’m trying very hard to keep some perspective and be grateful for what we do have.

Hello all!
I have a DD 4, ASD and pre verbal, I strongly suspect adhd also as she never stops moving and can't really be still for long. Which makes a lot of things feel impossible so our outings can be limited.
I see people saying they place marked this thread. What does that mean and how do I do it? I clicked save 🤷

Hey both

Place marked as we moved from another thread :) can I ask what pre verbal is please?

Hi, can I join? I have dc1, 19 and at university with support, he has autism. Dc2, 17 and autistic, dc3, 15 and on the waiting list to be assessed. Dc4, 12 with learning disabilities and dc5, 11, autistic, cognitively average but with the emotional development of a toddler. Dh has been away this weekend so I am self medicating with the good chocolate rather than the Tesco own brand I normally have.

@elliejjtiny 5 ND kids! You need a medal! My dh has been away this weekend too flying back as I type. Have you struggled on your own?

I do need a medal! The main issue has been sleeping, or the lack of it.

I hear you! Ds is still wide awake now and when hes up this late its usually till 2,3,4am and we're up at 7 for school and work

Mine is awake already, three hours sleep looks like our lot today. I haven't even been to bed yet 😭

Dreading it 😂

its nice to get a break but it’s the commute that is insane (over 4 hours in the car a day for me) and 3 hours to myself

dd quite likes the routine but I dunno if she’s happy there

i wonder why autistic kids just don’t need sleep?! 😂😂

Ah ok, thank you!
Pre verbal in that she hasn't started speaking yet, but I am very hopeful she will one day in the near future 😊 she's delayed with a lot of things but does seem to eventually get there eg she finally started waving a few months ago 🥰

GABA disregulation sadly.. impacts sleep, speech; that’s where US is so far ahead with biomed/meds that treat these areas and have enormous achievements on addressing ASD symptoms !

good luck for school everyone !

Dd is up and screaming - I’ve just made her some chicken nuggets and I hope she will drop off after she has them

I didn’t know about meds for this in the us, will google

dd has her melatonin but I stopped it as it was making her drop off and then wake up an hour later 😪

I dont know how you have the energy to be up making food. Dh arrived home and hour ago and has just taken ds as im lay here crying.... again. The hair pulling etc quickly escalated and im exhausted from so many bad nights. Hats off youre defo handling it better than me!

Hey 👋
Just a little intro..mum to 3, middle child (mildly) autistic, diagnosed at 5 yrs old.

Youngest is medically fragile, now recieving palliative care ❤️
But she's awesome 😎
She is a quadriplegic since birth, epilepsy, Non verbal, tube fed, etc etc.. but she's great, understands everything you say, uses an 'eye gaze' computer to 'talk'. Has the most amazing laugh and naughty streak 😂 ❤️

Looking forward to getting to know everyone