-
- Member
Fri Sep 02, 2011 5:46 pm
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
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
