Hi everyone, I care for my two disabled daughters, let’s call them SL and SR. SL just turned 18 a couple of months ago, she is autistic, has depression, severe anxiety, tourette’s, migraines and (not yet diagnosed) Hypermobility Spectrum Disorder. SR is 15. She has so far been diagnosed as having Chronic Fatigue Syndrome but waiting to be assessed for ADHD and Hypermobility Spectrum Disorder. Both of them need a great deal of my time and support and although my husband is very willing to help, neither one will accept his help most of the time. Quite hard on him, and exhausting for me!!
Hello & welcome Sally
My goodness what a lot you have on your plate. What is happening with your daughters education. Have they both been at home full time. If they are in education do they attend mainstream schools. Is there future plans for them. In general do the girls have issues with males.
Have you had a needs assessment for the girls. And a carers assessment for you and your husband.
Do I guess the girls may have special education statements.
Hi Sally, welcome to the forum.
My son is 41, brain damaged at birth, lives in a flat with carer support.
Are your two still in school, college, day services?
What help are you getting from Social Services?
Did you know that disabled people can claim adult income related benefits at 16, even if they are still in school?
Are you aware of the DWP Appointee scheme.
Welcome to our forum, I’m not sure if you are aware but we are currently running a series of online weekly meet ups for carers to get together and chat informally. People say they’ve found it really helpful and supportive and it’s nice to be able to take a little bit of time for yourself. There’s no pressure to share any more than you’re comfortable with. Join up details are here:
We are also now running a weekly Share and Learn sessions, where we run a series of fun and relaxed online sessions where visiting speakers who share tips and skills on a range of topics - please have a look at the link and see if one grabs your attention.
Do join if you’d like to, we’ve had a lot of new carers join the sessions recently and it’s a great way to meet other carers.
with best wishes
Hi again, thanks for the welcoming messages, sorry I haven’t been able to reply sooner, it feels as if every time I sit down at my computer one of the girls needs me for something! Hopefully I have a few minutes.
Thanks for the info, I’ll see if I can find some time to join an online meetup or something. To be honest, looking after myself has always been something I’m not great at. But I’m working on it, and the girls are at least old enough to grasp the concept that I do truly need a break sometimes and that I’ll be very little good to them if I allow myself to get so run down that I get ill. I have done that before, I was so run down I was ill for almost six months straight, one cold after the other culminating in a massive chest and sinus infection that needed three rounds of antibiotics plus steroid tablets to fix! I got through so many tissues that I saved enough box lids to claim an entire teddy bear family from Kleenex!
SL is just finishing a two year level 3 college course in Photography. SR has been home educated for two years now and is trying to take some GCSEs. We managed to squeeze in her Maths GCSE exams in early January, just after the government announced the cancellation of this summers exams. We just got her results yesterday, she got a 6 (which in the old letter grades would be a . She’s really pleased with that, and I’m really proud of her. We’ve had to postpone her other exams that were booked for the summer.