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 ❤️

LD is normally Learning Disability but it could mean something else, I'm hopeless with abbreviations

Oh thanks @Tiramisuforone , it seems obvious to me now 😅

@Rinoachicken I'm sorry for your work situation, that sounds like a lot of pressure! It's frustrating sometimes (ex NHS) when those in management aren't understanding

@Helplessandheartbroke 💜💐 how are you feeling now pp? Do you take anything for your mood, I do, it's helped me keep putting one foot in front of the other! It's hard, you don't get any time to yourself, and I wouldn't change my DC for the world, but I am very over stimulated and touched out as they coregulate using me

Also apologies to all for cross posting or missing posts, I'm always halfway through a scroll and always get my attention called away by DC inc rn....you know how it is!!!

🩷 it might also be learning difficulties, sometimes they change meaning/thresholds/diagnosis in different areas, it's hard to keep up (and my memory is like zero!)

Thanks for asking :) I have recently started on ADs again to try and help with my ocd. I've been scrolling for a couple of hours and seen happy posts etc and it helps. Im going to try and sleep soon as I've no idea what time ds might wake up and lack of sleep makes everything 100 times worse. I hope youre ok 😀

Oh god I'm exhausted and completely agree re lack of sleep ❤️

Frustrated little boy here tonight.

Came home from school; who reported he’s been “disinterested” today, and has spent the majority of the night either shouting or lashing out at people. He hasn’t bitten in about 6 months… until tonight. Slapping, frustrated grabbing, screaming earlier because daddy had the audacity to go downstairs.

I do assume he had a headache, because he kept turning his light off and he’s usually scared of the dark.

We bought him a new “no spill, indestructible” bottle today.. it’s broken.

For some reason I had to hold everything tonight. 2 juice bottles, the house keys, 3 toys. Not do anything with any of it, just sit there and hold it.

Tucked up in bed now with Calpol taken, fingers crossed it’s just one of those days and he’s better tomorrow!

Oh I'm sorry @SleeplessInWherever for you and dh. Will he sleep through the night?

How old is ds?

Hopefully it's just an off night, i imagine he can't tell you what's bothering him 🥺

Sounds like a few of us have had a rough day! Hope everyone gets a good rest. Sending hugs ladies

@mumofoneAloneandwell

He’s 9, big lad though - he’s in 13-14 clothes 😂

Potentially, we do have melatonin if not, provided his first wake up isn’t too late.

Nope, he just repeats when you ask. I asked earlier in a “oh deary me” kinda way earlier “what’s the matter,” all light and sing songy, and he just shouted WHASAMARAAAA. No clearer unfortunately.

It’s not his teeth, I braved touching his teeth and gums. He doesn’t have a fever. He’s swallowing weird and turning lights off so I’m gonna go with headache and sore throat.

I've learned that virtually nothing is indestructible in our house 🫠

Sorry you've had a long evening so far pp 💜 I'm just back from another round of settling. We'll see if this lasts.

It's partly why I can only scroll rather than read or watch anything, i am needed every few seconds or so, and I bought a cheap magazine to flick through two weeks ago and it's still unread, I did pick it once I think 😅

Hi everyone,
Have seen a few posts about getting bloods done for DC. It's something I've wanted to get done for my 4 year old DD and went to paediatrician but my DD was and gets so distressed in a doc office they said it's best not to in case it traumatised her. She also cannot sit still so I don't even know how we'd do it without forcibly holding her. I really don't want to traumatise her but I've felt for a long time it would be a good idea to get bloods done. Any tips or anyone been through anything similar?

Hi again

Yes, LD meaning learning disability (mild LD in DS).
I work in a very specialised area of mental health so can’t move.

DH is a Forensic Social Worker - his work is fascinating but he doesn’t discuss it much as it’s sensitive. It’s a very stressful job - responsible for public protection and supervision of people who have committed crimes (some horrifying ones) while mentally unwell, convicted and detained in hospital for treatment (rather than prison, because severely mentally ill) but are now well enough to be out of hospital and back in the community. If there are concerns about their MH or risk he has the power to recall them to hospital. Some are still in hospital and will likely never be released (think Broadmoor etc).

Oh come on that’s my dream job!!!

I watch daily real life crime on YouTube (have to distract myself somehow , massively recommend when DC having meltdown! 😂)

Do anything to distract her , I put YouTube when they draw blood

test like this gives valuable insights , I’d do anything to make it happen (lollipop, chocolate , peppa there and then ) xxx

DD had to have eye surgery for a squint around that age and we struggled a lot with appointments where she had to have the drops put in (they sting). A lovely consultant sang songs to her and entertained her with his desk drawer collection of keyrings! Much better than the nurse who basically tried to hold her down.

If you can.find the right person they'll have ways. What are the bloods for?

Make sure play specialists are there they are a godsend! Also we don’t use the numbing cream as it adds to the worry we use the freeze spray which works instantly

ITA - we use Ametop cream for blood tests on DD (she gets a nasty rash with Emla cream) and promise her whatever it takes, whenever we need her to cooperate in something important! Sweets, chocolate, an Indian takeaway…. (I hadn’t heard of the freezing spray)

SpLD is the usual abbreviation for specific learning difficulties, as opposed to learning disabilities (LD).

Thanks all for your responses.
@BrentfordForever yes I really think it woukd be beneficial. There's no negotiating with her though, she's non verbal and delayed, although understands a lot not sure she would this yet. Chocolate would be my go to!
@Needlenardlenoo not even sure how to find the right person, we're in Ireland and the public health system is not good, took me months to get the appt only for them to say they don't think she should get blood tests. I just have a feeling to get them done like perhaps she could be deficient in something that may help eg iron and maybe that's why everything goes in her mouth!
I don't have a very concrete reason to need to get them done it's just something I feel could add benefit but I'm not sure enough to push the issue if it'll traumatise her.
@Sirzy im in Ireland I don't even know how to attempt the make sure a play specialist would be there. How do u do it?
@BlueandWhitePorcelain do you bring the cream yourselves?

@Dunnowhatimat IIRC, we’ve been given it on prescription to apply to DD, an hour before the blood test is due. We either apply it to the backs of her hands or inside her elbows and then wrap clingfilm round that part of the body. We can now get DD to have a blood test; but if we are not there and someone else is taking her, we tell them to apply the cream an hour before.

I have painful Botox injections for medical reasons and my consultant prescribed me Emla cream on his own initiative. It does help!

@Dunnowhatimat have you had the blood test done? I'd echo the others in saying that the play specialists are amazing. Just ring the ward before you go. I told ours at reception and explained that dd is autistic and non verbal, and they were more than helpful

We did dd's with me and one other person holding her down, and the play specialist holding her tablet.

It was over in 5 mins and we had lots of cuddles and tickles.

@Rinoachicken dh's job sounds so interesting but im sure so stressful on top of everything else

@BrentfordForever 😄 true crime has taken off but I'm so easily stressed i avoid it

@SleeplessInWherever how is ds? Was it a headache?

Aww bless him, my dd has echolalia too so just repeats random phrases she's heard, it gives me a little insight into her day 😄

@Tiramisuforone 😄 same here, nothing is indestructible

Sorry everyone if I miss your post, it just takes me a while to go through them 😅❤️

In bed with dd who is munching on chips while we watch married at first sight (peppa pig for her on the tablet)

I will say that the amazon tablet is the best one, with a hard screen protector

I did that too, they had a whole set up for sen paeds bloods, it was so smooth and I felt like doing a victory lap it went so well after me dreading it (nasal flu spray was a disaster). I think I might have rang the phleb unit ahead purely by chance and thought I'd mention DC's Sen so glad I did

It just makes things so much easier!

How are you and dc doing - our stories are similar although you have more dc, youre doing amazing ❤️

@mumofoneAloneandwell

Still unsure, he slept through until 5 that night, and then had a much better day at school.

Last night he was in a far better mood but then woke at 12… and 1.. and 2:30, and then got up at 4. So sleep definitely not the finished article, can’t have it all!

This week’s progress is that he’s started helping us make his sandwiches. He’ll get the bread, and cream cheese, and help us spread it (we hold the knife).

Baby steps!

That's amazing! It's all about the motor skills!

How's his eating? My dd is restricted and inconsistent honestly

Oh bless him, and you, how are you coping on such little sleep?! It's good that he had a good day - hopefully its not the flu that's been going around, fingers crossed