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 ❤️

@mumofoneAloneandwell he’s better as I have him lots of liposomal vitamin C, it kills any virus alive ! 😂

wine yipeeeeee!!

@Dunnowhatimat ah you’re one of us then 😉

This is just folinic acid and personally, based on my own experience , I wouldn’t give anything until I tested for some basic stuff (methylation and gut). I wouldn’t even do DNA/genomes testing as this might not be reality …

it d be interesting to see your kid’s methylation panel (homocysteine and how B12 is recycled ), we had some weird issues in that area xxx

@Dunnowhatimat we've been there with smearing too! Do you have a partner? Sorry if you've said its been a mad day and im catching up.

@BrentfordForever hope ds is better for school tomorrow! Do you work? I had to work with ds poorly last week its a nightmare!

@mumofoneAloneandwell I've also treated myself to a glass of wine this eve! We need these treats! How come dd is off tomorrow? Hope you get a nice day together ❤️

My family is not NT at all! DH, DD1, DD2, and DGD are all ND, as is another relative, all descended from MIL, who we suspect had ASD! They have between them any combination of ASD, ADHD, developmental language disorder, dyslexia, dyspraxia, sensory processing disorder, anxiety, social anxiety and OCD! They are all very different!

DH can be the life and soul of the party - very funny and quick witted, due to his mind going off at tangents in an instant. DD1 was the same, whereas DD2 has social anxiety. DD1 is very organised, but DD2 is totally disorganised. DD1 struggles to decode, but can comprehend the story; DH and DD2 can decode brilliantly, but don’t understand what they read! DH and DD1 can talk for England, DD2 only believes in functional communication, and doesn’t understand the point of small talk at all. DH has always been able to use hyperfocus at work, which made him very successful, DD2 needed methylphenidate to work.

Nobody can assume we live a NT life - actually life with someone, who is hyperactive is exhausting!

ok.

@BrentfordForever I would love to do these different panels and hope to someday, for now I'd just be happy with a basic blood test 😂🙈
I'm the same, I would be weary of giving anything serious unless tests done, for now it's just omega 3, broad supplement and just started magnesium in the eve as I've a feeling based on her kicking her legs so much that she may have restless leg syndrome at times. I get it too and I hate it so much! She's a very hyperactive child so it could just be that, but given she can't tell us yet I thought safest to try a bit of magnesium. Took me ages to look it up and try and find the best one 🙈 wish I put so much effort into my own health 😂

@Helplessandheartbroke smearing is one thing I find incredibly hard to deal with. I just burst into tears I find it so hard emotionally! Yes, I've a DH and he is good in some ways to be fair but very much not in others. Some days I'm unsure if we'll make it together.

@Dunnowhatimat been there honestly its heartbreaking!

Ds birthday today and I've just cried all morning as we've been up since 3, hair pulled numerous times and blinds pulled down off bedroom window. Its meant to be a nice happy day 😥

@Dunnowhatimat what magnesium are you giving ? Perhaps consider some probiotics too ? Xxx

Morning all! Happy Friday !

nearly the weekend and we can be all day with the kids FFS 😖

I hope this doesn't sound smug but I quite look forward to the weekends @BrentfordForever - our weekends are really structured and I don't have to deal with the 2 hour effort to get DD into school and then the meltdown in the evening. I've been keeping a diary of how the mornings are for our tribunal coming up and it has really thrown into sharp relief how different school days and weekend days are.

My son was 8.

@BlueandWhitePorcelain

You sound just like us. ❤️

Not smug at alll!!! I love it that you love it 😍

and yes that’s a very good point, not having the shitty school pressure helps !

so …. Are you loving Easter school break coming up soon? 😫

Haha, not so much @BrentfordForever - I've got to work, DD absolutely hates any type of holiday club, and her weekend routine is out of kilter in holidays when her activities aren't on! I'm trying not to think about that too much!

@Helplessandheartbroke Happy birthday to your DS!
I'm so sorry, I hope you're doing better now and the day went ok. I find holidays whether it's their birthday or Christmas or even Mother's day now soon, I feel that bit sadder. It brings the grief home a bit more. Big hugs x and you have a community here, you're not alone ❤️

@BrentfordForever I just started magnesium wed, it's the well.actually Liposomal Magnesium Glycinate. Starting off on a low dose, too early to tell if it's helping at all yet. I also give her bare biology omega 3 fish oil (which she will drink off the spoon?! But not touch a chicken nugget or an apple!) a broad spectrum supplement also. I did have her on probiotics for about a year but didn't see much difference really xx

I am very proud to say we were out for a lot of the day today after school and she had no toilet accidents! Very happy. We started toileting a few months back and I've always put nappies on when we're out but didn't today and it went ok! Although she did get very mad at me at one point because I think I brought her into the toilet way too much today 😂🙈

I saved it for tonight 😄

So glad hes doing better

How has his birthday gone?!

I'm sorry you were up with him, sorry I missed your post

Thank you, dd was meant to have a hospital appointment check up, but it was cancelled so we just chilled. I want to take her to nandos tonight but that means doing her hair which is just too much

So we'll have egg and chips

Well done to dd! That's no mean feat ❤️

I've seen people say this and completely understand

Its very true for us, with the long commute. Have you considered home schooling?

You dont sound smug at all! Xx

Dd is almost 7 and is picking up more words

I was told it would happen when she turned 5!

Thank you for the birthday wishes. Yes I felt sad that he didnt understand its his birthday but hes loved playing with his balloons all night and eating his favourite take away :) I've tried to be as up beat as possible for him but its so hard when youre exhausted

What did he have to eat?

Has he turned 5, iirc?

😄 my dd threw the dolls i bought her for Xmas in the bin, whilst maintaining eye contact with me!

Youre doing amazingly honestly - parenting is tough at the best of times but with what youre dealing with, youre doing him proud x

Thank you very proud of her 🥰

6 today :) thanks sweet youre so kind.

Bless dd whats she like! Did you get them back out?

We had chicken tikka massala

Considered it and ruled it out 😂Firstly because she is quite social albeit very much on her own terms, and secondly because she has very strong views about school work happening at school and home time happening at home.