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 ❤️

Thanks for the thread, nice to have solidarity with others who get it. Single mum to 13 year old teenage girl. She has been out of school for nearly three years as the wheels came off at secondary school. Waiting for a specialist school but they are all full. She’s a lovely girl.

I'm struggling because I don't feel like I should be struggling.
My DC5 is undiagnosed but referred over 18 months ago, high functioning and masks to high heaven at school.
On the surface everyone sees a 5 year old whose just extremely shy. I feel like I shouldn't find it this hard at times, when I know that so many other SEN parents really are struggling. I genuinely have so much respect for everyone fighting and advocating for their DC.

I know my child is in the wrong environment … but she’s coping but I feel so bad she’s ‘coping’ cos I know it will compound. Thank you for setting this up - it’s such a scary time. I hope really someone is able to fight against this white paper. It feels so so unfair, why don’t the government realise,

My old boss is in a senior political position. And I wonder about getting in touch with her - she is Labour Party but it’s not my constituency so I don’t think she can raise it. My local MP is conservative. I don’t know the way forward for my DD and I can’t help but panic about the future.

@TiredYetExhausted fingers crossed it’s easier tonight! Yes I know almost all my son’s weird phrases, he’s got much better at expressing himself in ways others can understand, but I’m still often the chief translator.

I suspect I am in the wrong place because my child just has profound and multiple disabilities but today is a really tough day. He's unhappy about something but I have no clue what and he can't tell me. I love him to bits but on days like today I feel incredibly isolated.

You’re not in the wrong place! It must be difficult for you not being able to communicate with him 🥺

Good afternoon all - me and dd are finally settled, we woke up at midday and then dd had another accident on the stairs which needed cleaning. She got a telling off as she knows to go to the toilet, but now I feel bad 😞

She’s okay with school some days but I suspect she isn’t happy. I wonder if they’re being nice to her or if she’s being told to ‘go away’ by the verbal kids

shes in an ARP - a class for kids with autism but there are two of these classes - one for non verbal kids and another for more verbal ones

she has said ‘go away’ before and sometimes just bursts out crying - god I’m so worried about her

i can imagine ds struggles with the first day back, which is always the hardest 🥺 - it’s so hard to know what to do in circumstances like this but I will say that he knows you’re his safe place 💐

@Helplessandheartbroke what time did you get down in the end? 💐

@SoManyFidgetToys oh bless him 🥺🥺 - that was my experience at school so I know it’s tough on you both.

re homeschooling you have to do what’s best for you both tbh, it’s not a magic wand but can help some families, but can also be exhausting not getting a break

Omg 🥺🥺 - bless him

sometimes you just want that peace of knowing you can sit for 5 mins without your kitchen being in danger of bursting into flames, honestly

@Seawolves I think your very much in the right place. You are doing amazing! Do you have anyone you can talk to, offload to or get support from? Even if it's just to say it's been a bad day.

How are our evenings shaping up? Anyone up late tonight?

me and dd have just got back from Asda and I’ve put some brownies on for us (she won’t eat them but likes saying brownie!)

❤️

DH had a last minute idea to go to the local Brazilian grill restaurant so we're now in a food coma! Now DH has just started a contract he could pay as well.

i’m obsessed with Brazil right now @Echobelly, that sounds lovely - did dc cope with the food? Mine only ever eats French fries when we manage to eat out 😂

bless you both, specialist places are a nightmare! How are you coping with homeschooling? Do you get a break?

i am literally thinking of pulling dd out of school as the commute across London is just too much. It’s just me and her as well

I have DS who is 7 and has mod/severe combined ADHD - recently diagnosed but has been struggling a very long time with emotional outbursts at school (and increasingly at home but we managed those). I picked up his fist box of medikinet today and will start it tomorrow. I know it's unwise to pin all hope on med but also.... I'm kinda pinning all hopes on them! He's such a wonderful child and he gets so upset with the dysregulation/is so remorseful after

Half term has been ok generally - mix of some truly wonderful 1-1 time (either with me or DH) and dysregulation including chucking himself on the floor in shops. Over all more positive though which tracks, school has always been the bigger issue

Currently sleep is driving me insane - he just can't get to sleep until 10.15-11pm no matter what we try. as we speak he's next to me in bed complaining he is tired but can't sleep whilst also being the fidgetyest child ever to exist. It's impacting us all... I really really try to be containing but find myself getting so snappy and annoyed then I get massive mum guilt

‘Penguins like it cold, chickens live on a farm’ made me chuckle @K37529 - hopefully the language will develop into better communication bless him

@Newskool 💐 I completely understand you re him falling through the cracks 🥺 - does he have growing pains? Or I wonder whether dispraxia could cause bodily aches?

@TiredYetExhausted hope you got your better day today?

@SoManyFidgetToys that’s really helpful advice re gestalt language processing

@allthenamesitriedweretaken just so I understand, what’s mod? Bless him being unable to drop off, we all get snappy on lack of sleep, every mum on the planet! Glad he’s had some positive one on one time though

❤️

Good luck! You ll love Medikinet but… prep yourself, it ll make sleep worse

apart from this, best med ever !

Mod=moderate 🤗

Ah thank you x

@allthenamesitriedweretaken I don't think you are at all unreasonable to pin all hopes on meds! I really hope they do help, and please remember sometimes they do need to try more than one type so there may still be solutions if these particular ones don't.
Have you got melatonin? Does he sleep once he is asleep?

@mumofoneAloneandwellsorry, yes, moderate!

@BrentfordForever that's reassuring and also terrifying 🤣

@whydidyougothere he paediatrician has prescribed the medikinet alone currently to see if it contains him enough that he doesn't overthink massively at night as he does currently. We've got a review in a month, with allowance to go up on the dose in the meantime after a week or so, and if sleep isn't better they can prescribe melatonin then... Speaking of which. I've just heard the first snore so he must have dropped off - once he's asleep he generally sleeps through, you can even wake him to move him back to his room and he basically zombies it to bed then is straight off again

Hi all,

Lovely to have found you all. It's a lonely place as an ASN parent (in Scotland we use additional support needs).

I could write a book, but the potted version is: DS3 is just 14 & has autism, adhd & uncontrolled epilepsy. He was in mainstream primary & it was the fight of our lives to get him into alternative pathway for secondary. We took it the legal route, & even the leader of the opposition party put pressure on our council, who eventually capitulated! He's in a mainstream school with a specialist unit attached and he's fully hybrid, with lots of time in mainstream, but other subjects in unit with all the support the specialists offer (1 teacher & 2 TAs for 6 pupils). He loves it & they are amazing. I know we're lucky. Too many other parents don't get these places.

He is fully verbal & sharp & funny, but very hard work & our lives have been completely changed forever- as you will all know only too well. After 2 other DC & a very 'standard' life I have grieved for so many years for the life we should be having. I'm somewhat past it these past 2 years- I'm not sure if that's acceptance or he's growing up & understanding himself better (certainly less violence & overwhelm & meltdowns)- and try not to compare to my friends' lives. It's difficult as we're all at the stage of grown up children (other DC are 21 & 19 & at university) & having more freedom, but not us.

We adore him, of course we do, but no-one but no-one gets it, even family.

Sat night & he's just in bed (after the rugby 🏉- go Scotland!- & the extravaganza of Gladiators) so just got a cuppa & will try to watch TV before conking out!

I wondered if I could ask here too as the sen board isn't all that active. Would anyone have any recommendations for an all terrain Buggy (big wheels to cope with mud) to fit my smallish 8 year old. Preferably be able to fold down smaller too.
Would absolutely love to be able to extend our days out safely. I'm currently carrying him or keeping walks very short. Definitely can't afford the sen buggies. So looking for cheaper alternatives/second hand.Highly doubt we'd qualify for any help either as hasn't got diagnosed mobility issues. Just a runner/meltdown/rag doll.

No way are you in the wrong place! Sen is incredibly varied and this sounds incredibly tough.