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Full time mom of 5 and carer of 3 - Carers UK Forum

Full time mom of 5 and carer of 3

Tell us a bit about yourself here.
Hi y'all,

My names Debbie and I'm a full time wife and mother to 5 children who range in age from 5 (almost 6) to my eldest who is almost 20. My eldest has global developmental delay (in other words they have no idea why he has the problems he has), moderately challenging behaviour and autistic tendancies. Since leaving school he has had nothing at all... there are no day facilities in our local area and the agency first tasked with supporting him couldn't seem to get their act together to do any more then take him swimming twice a week. When the charging policy came in to force in our authority it was going to cost £50 a week for the continued privledge of a second rate service so we decided to go it alone. We keep busy but I don't think local authorities have any idea how much carers save them or how much it costs to care for someone who has a fairly high level of need. In the end we couldn't have afforded £50 a week on top of all the other costs so now we do our own thing. Son number 2 has significant learning disabilities including dyspraxia, cognitive impairment and severely challenging behaviour as well as some autistic tendancies. He was pretty much kicked out of school at 16 and we've spent the last 3 years getting support from a variety of agencies but all this is now under threat because he is officially an adult in January and adult services don't recognise or accept that he has a learning disability. It seems the definition is different for education and health so 12 yrs of being 'labelled' as disabled has now been thrown out as inaccurate. Our youngest is severely non-verbal autistic. He's a gem... but has his own demands! I love them all to pieces but some days Im just sick of the fight and wonder how much more I have left in me. It puts a strain on our family, my marriage, my relationship with the other children and it's exhausting! Having said that I can't imagine my life without them. They've changed me and through them I've learned to embrace the small things in life, to focus on priorities and to realise that the only thing that really matters is family. I want to be the primary carer for my children as long as Im physically, mentally and emotionally able to... I just with local authorities would appreciate that and be more supportive instead of moaning over every scrape of support we request. Anyway, long moan over! I've joined here in order to chat with like minded people who are in similar situations and to hopefully be part of a bigger voice for carers nationwide.
Blessings to all carers and ex-carers out there!
Debbie x
Hi Debbie.

Welcome to the site.

My 9 yr old was diagnosed with global delay at around 4, i think they use this term when they are stumped, they wouldn't diagnose my son as he didn't tick all the boxes, they had them stumped. but i knew it was more then this, finally just before xmas he was diagnosed with Autism.

Keep posting, lots of lovely people on here

Tracey x
Hiya I am Sue and I have just joined this forum - look at my new member post for info about my situation. It would be good to exchange ideas and to have someone to talk to who understands!
Blimey Deborah you do have your hands full. I don't know how you manage to keep your sanity trying to entertain and structure the day for your eldest and soon for your two sons. Plus in the school hols your youngest too ...

Would direct payments not work for your eldest, although you would have to dream up the activities for the PA to do with your son (in itself exhausting) at least your son would have a change of face helping him.

I'm new to this post school malarky, our young people need a purpose to their day as much as the next person.

Melly1

Ps forgot to say welcome.
Thanks for the replies everyone! It's good to know there are people here who understand the situations we face every day. Yes my hands are full but I like to be busy and as long as we stick to a schedule it's generally not too bad. Its when sickness or emergencies come up that it can be a bit stressful!

We did have direct payments and I still have them for my second eldest but our local authority has made a lot of changes to the DP agreement and now how you use them is quite restricted so we ended up giving them up for my eldest. Plus he only got 6 hours (@ £10.20 ph) of DPs a week and then we were asked to pay £50 of that ourselves because of his income so it wasn't worth the paperwork for the sake of a little over £10 extra.

Ben (eldest) has no named worker as our authority is notorious for not being able to retain SWs and his left in January and hasn't been replaced yet. We are expecting to get some respite sorted out for him but not yet sure how many days they'll give us. Hoping to get 2 weeks a year so will ask for 4 to start with! Haha... we know how the game is played!

Lovely to meet some new people and looking forward to being involved in the lively forums!

Debbie x
hello and welcome