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lone parent with fibro and a daughter with A.S.D. AND A.D.H.D.

cardiff69 profile image
19 Replies

Is there anyone out there with the same. my daughter is 14 and only just been diagnosed,im looking for info bwt carers as she need 24/7 supervision.

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cardiff69 profile image
cardiff69
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19 Replies

Hello

Sorry to here about your daughter, I am surprised they have taken this long to diagnose her. It must be very stressful for you. Mind you we had a terrible time with my son when he was a teenager and it wasn't until he decided he was going to go to uni that he was diagnosed with ADHD and a list as long as your arm of other learning problems.

Have you spoken to your local health authority as they would probably be able to tell you of respite places in your area and whether they can help you with her care. It varies from area to area as to what is out there.

Check the link below it may help.

nhs.uk/CarersDirect/guide/k...

Can her dad give you a hand?

Love n hugs Karen

Hello there Cardiff, I completely agree with Karen's advice there, also you may be able to get some advice regarding help from your GP, might be worth a try bearing in mind your daughter's needs etc. I am so sorry to hear about all this.

Please know that we are always here for you, we will do our best to help and support you the best we can and hopefully point you in the right direction.

Take care my dear.

(((hug))) xxx

Libs

cardiff69 profile image
cardiff69

her dad waste os space, ye phoned child access point today waiting on call bk, been trying to manage but as i also have c o p d, and emphesema im not very strong. but yes it was transition to high school that brought it out, as she always been very routine and bright very hypo, but im a mother of 5 and as all kids are diff didnt have a clue.

cardiff69 profile image
cardiff69

thank you the gp wont do shared care so there no help, but the team she is under did tell me to get in touch with a social worker as they can help with funding for carers.thank you both.x

You are welcome. Sorry her dad is no use. As you say all children are different and often those that are the brightest are those with problems.

Let us know how you get on.

Love n hugs Karen xx

cardiff69 profile image
cardiff69

will do thanks

onhereagain profile image
onhereagain

Same issues my daughter is now 27 but still with me. Same came to a head at senior school so did not get her diagnosis until same time PM me if you want.

cardiff69 profile image
cardiff69 in reply to onhereagain

its so hard init and not getting any info is worse, they say girls can mask it.

beth2 profile image
beth2

hi cardiff you should your social worker about the projects that action for children do my son is entited to 24 nights a year he loves going in they are brillant but you do have to go through the social worker your daughter may have more nights hope this helps take care love beth x

cardiff69 profile image
cardiff69 in reply to beth2

i dont have a social worker yet i enquired today,because them people scare me and thanks

beth2 profile image
beth2

please cardiff dont think that I was LIKE you but you cannot get these services without one and honest to god you do need them I would not get one for my son in the beginning I went 3 years before asking for one and there are so many other things that your daughter will do my son also goes out with worker for 3 hours every week they go bowling golf and meet up with other workers and children you can PM me if you want my son loves it and if he was not HAPPY I would not let him go I know how you feel sweetheart it is had being a parent but when you see them happy after being on the trips you will know you did the right thing take care

love beth x

cardiff69 profile image
cardiff69 in reply to beth2

well 24hrs on still waiting for them to get back to me.

rosylyn profile image
rosylyn

Hi Hun , my son has adhd and Aspergers .He sees the mental health team to get tablets for adhd tablets which really help you will need to be referred to the mental health team as doctors can not hand out these tablets. good luck

hugs xxxx

cardiff69 profile image
cardiff69 in reply to rosylyn

ye she on meds for her adhd the highest dose but i dont see any change

rosylyn profile image
rosylyn in reply to cardiff69

Go back to doctor as there are to types of adhd tablets now .My son has started the new ones as ritterlin was not good. my son refused MEDs at 13 he is now 26 and asked for help as he could not cope with life anymore. he still lives with me and i am his carer. life has been less stressful and my fibro pain has gone down and life is nicer now. i really hope you get help for your children.

hugs xxxx

cardiff69 profile image
cardiff69 in reply to rosylyn

she on strattera equasim and amblify. but thanks.

ArctoLindy profile image
ArctoLindy

My son will be 23 this year and although he's not really coping what well with independence, he's been living in his own place since he was 19. He was diagnosed with ADHD when he was 6 and although he was never diagnosed with ASD he has a lot of traits. Mark was under child and family psychiatry for many years but he refused medication from the age of 10 and he wouldn't co-operate with them, so they signed him off at 16. I managed to get him a support worker in the early days of him having his flat but she was a casualty of cuts and despite being offered two new support workers Mark didn't co-operate with either of them (he hates change and I think he just wanted Lis back) so he now has no help at all.

I worry so much because I think sooner or later he's going to lose his flat and there is no way I could cope with having him live back with me - it makes me feel very guilty that I feel this way but he used to make my life a living hell when he lived at home and I had to constantly carry a mobile phone for my own safety. I couldn't sleep until he did because I was worried about what he might do if I fell asleep first and to make things worse, he was like the Duracell bunny, sometimes he would stay awake for days. The only time I could relax was when he was out and I locked the door so he couldn't get in - I had 2 locks and he only had a key to one of them.

I really hope you manage to find some help for your daughter, and if you do, hold onto it with both hands!

Hugs xxxx

cardiff69 profile image
cardiff69 in reply to ArctoLindy

i had to get a solicitor and private drs to get her stamented cos the l.e.a. refused because shcool lied to cover thei ass,thats when it all came out, then she had to be tested again by n,h,s. who confirmed the same. ye i dont sleep much because of the pain but she dont sleep at all.

ArctoLindy profile image
ArctoLindy in reply to cardiff69

I really feel for what you're going through and it makes me so mad that we have to fight so hard for every little bit of help, its made so much harder by our own health issues - sigh.

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