Here are some suggested organisations that offer expert advice on SN.
Hi, does anyone know of any parentline type helplines specifically for those who have a child with special needs? Or has anyone had access to counselling? We were originally told we'd get counselling when DD born but now it seems that's for her when she's older not us!
i know that where we are we have parent partnership, although i think that is mostly to help with you getting what your child deserves, but could be more to it, i havent accessed it as of yet, and we also have a group called face-2-face, which run a befriending scheme for peeps with sn kids, i have no idea where you are hun, but you could try looking up those names see if you can find them in your area, from what i gather parent partnership is council related so i would have thought most area's would have one, how old is your dd hun, could you not have a word with the hv or school nurse if she is older, they should be able to point you in the right direction, good luck hun, hope you manage to find something soon. x
have a look at www.snapcharity.org.
SNAP is short for Special Needs and Parents and are a charitable based organisation.
I don't know what your dd's sn are but I found SWAN (syndromes without a name)really supportive when I was struggling and my Portage worker was better than any therapist.
Also Contact a Family have been helpful too.
Depending on your dd's age - my HV will pop round for a good 'getting it off my chest' session every now and then. It was her idea and although it doesn't often end up with much positive action, I always feel better.
I hope you find what you are looking for.
Sorry I didn't come back to this last night as DD got up and wouldn't settle, its her teeth bless her. I wrote a long post just nowe and then the computer kept freezing when i tried to post so here goes, testing.
Ok seems its working now!Thanks for the suggestions.DD is 9m but for some reason my HV makes me cringe! It's as if she's always trying to get emotion out of me so I always act very positive around her even though I don't always feel it! We moved to a new area when DD was 4m and I lost my lovely HV from the old area. Both the new HV and GPmade some very insensitive and innaccurate comments about DD's condition so I've had to explain it to them. More often we see DD's teaM at the hospital who are great but very busy. I am lucky enough to be involved in a wonderful support group for the condition so am in touch with other parents which has kept me going at times and it was a parent who said she had counselling through her DC's specialist team at the hospital. But this isn't offered here. I will try the SNAP group though, and alson parent partnership. I think they ran my baby massage class so may have the number, hadn't thought of them. It seems that when help was offered I was determined I didn't need it and now I do people think I'm coping so don't ask! I cope fine most of the time but feel like somethings not right sometimes and am a bit weird about births etc (DD was diagnosed 2weeks after birth before which we were in hospital not knowing what would happen so the whole thing plays on my mind a bit.) If anyone has had counselling or extra support, did it help?
havent had counselling regarding the boys sn hun, although i do think when it was all 1st up in the air it should have been offered, but like you in the early days i was all positive and determined to cope, i am lucky, my boys are both development problems mainly so it is easier to get help, from the form of others that have been in the same boat, have a look online hun, i joined a group for parents of sn kids and its been invaluable, we have joined up with a sister group now so not all parents have sn kids, but that really doesnt seem to matter, there are groups online and it does help, i also find mumsnetters useful! on the whole i do think counselling can be a very positive experience hun, although i know it doesnt work for everyone, am sure there will be some out there for you somewhere, good luck finding it x
Thanks, it's funny how it hits you later on.Will start to look into it properly tomorrow altho might do online search tonight. My problem is I'm fine in the day but get stressed and down about it at night. DD has quite complex medical needs but developmentally her condition should not affect her. This puts us a bit in between groups support wise iyswim. Sometimes it's as if I look back on her awful start in life and think oh my god how did i cope with it? So its strange that now the future looks more certain (her condition will always be there but at least we know what it is etc)that i feel shocked!
If her condition has a name I;d really seek out people in the same situation, even if you end up exchanging emails with a Mum in the States or something.
I've recently paid for counselling as well (my son is severely autistic). just had a 6 month stint and found ti very helpful. The counsellor had a lot of knowledge about autism, which I found helpful, although we didn;t just talk about autism.
Hi yes am in regular contact with parents around uk and have met one. Even spoke to an adult with the condition which was great. I agree it's the best thing. Now I've come out of the confusion stage though I feel i need help as don't want to pass any negativity on to DD. Think counselling would have to be fairly specialised though. Keep meaning to ask at specialist appointments since i know from another mum that she got it but kind of embarrassed as i have to deal with them all the time.
we have a parent partnership near us
is it in many other places across UK?
I think maybe... going to try and google it and see what comes up in my area but am pretty sure it was them that were involved with the baby massage group.
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