Hello newbie here x

[Debra_19021]

Hi I’m new here
I have a 13 year old daughter with Cerebral palsy, learning difficulties and epilepsy
Wheelchair outside wobbly walks in doors.
A son17 hf autism, adhd etc residential in sixth form Monday-Friday which is brilliant for him and me
And 2 nieces moved in 6 months ago 16&11 now full time guardian

I’m not very well my self, hip tendon problems and getting worse.
& I’m struggling to be the best for everyone now as I’m so tired.
I’m here to make friends let off some stress and hopefully feel like I’m not alone, I live in Horsham, I do eye lash extensions part time at home as it’s the only thing I have that’s mine, it’s my time meeting new people and I love doing them but struggle fitting it all in.
Married 15 years but relationships suffering due to all the stress and he works away Monday-Friday
So hi again
Deb

[Honey Badger]

Welcome Debra,

You strike me as a very industrious super mum of sorts

Its both good and important you are able to have something that you can call your own, in the form of the business, and you've always got the potential to expand it some time down the road too should you choose.

I get that you would just like to engage in others in the same position, and seem to have much in hand, though I would ask do you need/receive any additional support (be it with the care itself or financial etc) aside from family? In respect to the needs of your children (which are significant and many) is there any sort of provision in place which could allow for you and hubby to have a little more "you" time? (even if to begin with its just the odd meal together for a few hours etc)

You are spot on about the stress and it can take its toll when competition ( but also genuine need ) for affection/attention is so high, you and hubby are only 2 people after all. You are both incredible.

Best wishes to you/your family

[Melly1]

Hi Debra,
I agree with Honeybadger, you definitely sound like an industrious Supermum. Being in constant pain whittles away your resilience and ability to cope ( I had firsthand experience of this; kept putting off hip operation and in constant pain, mobility lessening.) Is there any treatment for your hip?

You do sound very stretched. Does your daughter have any respite or go to any clubs? Have you heard of PHAB, they run clubs and holidays for children who are both physically disabled and able bodied ... perhaps your daughter and nieces could all get involved!

You definitely need to look after you, so you can carrying on supporting everyone else.

Melly1

[bowlingbun]

Welcome to the forum.
I was given a tip as my son was approaching "transition". Keep him in education as long as I possibly could, in theory they are entitled to it up to the age of 25!
My son went Farfield Opportunity College near Warminster. It was hugely beneficial, but I had to fight for a place.
From what I have observed, there seems to be a window of opportunity. Either children with special needs go away to college, then residential care or supported living. OR they stay home with parents forever, because that is cheaper for the LA!
Don't let this happen to you. Find places you like for both children as they approach "transition" and help them move away from home, allowing them to come home very regularly, but with someone else providing a lot of care.
Also, make sure your nieces help in the house, and you streamline everything so the work you do is minimised as much as possible.

[MrsAverage]

I, too, am a great believer in spreading the load. It doesn't all have to be you doing everything. You have 4 nearly adults there. Each can have jobs to do, age and ability appropriate of course, but I think you will be surprised at what they are capable of and the pride they take in being given responsibility.

It's ok not to be Superwoman, it's ok to be tired and to admit, else you are teaching them unhealthy messages

[Debra_19021]

Hi to everyone who replied,
Thank you so much for your kind and very understanding comments.
Youv all given me some good ideas esp getting the kids to do more chores.
And bowlingbun this has been a question in my head about after these 2 years in sixth form, as I thought for his residential place at his sixth form behaviour school, but the adult mental health team are already in place for post 18, and I have a great team of social workers who support us, Iv been very lucky so far. I needed to know about his living after I couldn’t have him go into a ymca with able teens as he is too vulnerable, but the assisted living sounds like a great idea. He is very oppositional so u have to word things carefully but he’s loving his little flat at school but he also loves coming home too.
My daughters hours have just been raised with independent lives, so I have a lady ready to do respite, but sophies suffering terribly with seizures at the mo, hormones, and I don’t like her out of my sight, I know I should trust others but I can’t let go. She does spend few hours tho with the respite carer and she has lots of fun.
Thanks for taking the time to respond I’m glad I found the forum
Debs xxxxx