Hi i have 3 children alltogether,but 2 of them aged 8 and 16 months have disabilities,our 8 year old has mosaic down syndrome and other problems ranging from adhd,add,asd,dyspraxia,severe learning disabilities,severe speech and language,severe sleep insomnia,hypotonia of mouth and legs,and severe behaviour,his understanding assesed by speech and language last was at the age of my 2 year olds,only my 2 year olds understanding is more advanced then his.anyways our 16 month old has a rare chromosome disaorder and weve had hell for 16 months with battaling to get care and any help from social services for both,only to be told sorry cant help they dont fit a pidgeon hole.life is so tough everyday,and we really need some help,i spoke to there genetics and they said dunno how you cope,i said with great difficulty,ive been on anti depressants im so so tired,me and my husband dont get any time out,its 24/7 job everyday.please please help,we did use to have a mencap support worker but shes on maternity leave i belive.
Hi, sorry to hear you're having a hard time. It's not easy, but you have to keep pressuring Soc Ser and other services to get the help you need. Don't give up - keep on pushing them, hassle them, harrass them, complain, fill in forms, phone at 4.55pm regularly and eventually you will get somewhere. If necessary get in touch with your local councillor or even the local press.. a little leverage goes a long way. You should also ask for respite care arrangements ( regardless of whether you want it or need it ) citing damage to your health and well-being if it is refused. Sadly getting what you need is a fight and sometimes you have to fight dirty to get results ! I hope things improve for you.