What help is out there for parents of children with ds?

[auntiebob]

my ds1(8) has ds. I had lots of support when he was pre-school age from hv, portage and local early years centre but feel that since he has been at school i dont really get any support and i dont really know wot is out there or how to find out wot is about IYSWIM. guess i am just feeling a little bit isolated at the mo. any ideas gratefully received.

My DD is 7 at the end of the month and also has DS. Do you have any local groups run by your child developemnt centre. Possibly ask the DSA or look online, check with your Paediatrician......even ring the council/social services/children's teams.

Sorry clutching at staws really, where abouts are you?

Am in a small town in gloucestershire. all the groups at the childrens centres are only for pre school children. have been referred to the learning disability team and they did an initial assessment a few months ago and am now on the waiting list but have no idea how long i am going to have to wait.

Have you contacted the DSA auntiebob?

I know when DD was first born there was nothing in my part of Kent and I would have had to travel miles for a support group,not exactly ideal with a baby not feeding well and a very active 2 yr old!!LOL

By the time DD was about 2, a group was set up by the DSA but a short time of running sucessfully the funding was pulled and the parents continued to run the group themselves.Madness is you are not alone but finding support can be a nightmare.

Just a thought, how about that group..something like Family Link....help, does anyone know who I mean?

I don't know specifically about support for downs syndrome but have a son with ld/asd and have found some things for him,( which gives us a break) but not local to you.
Are there any general sn clubs that ds could join in with? Our local one runs a playscheme in the holidays for over 8s for all kinds of disabilities. Is it worth contacting mencap? Also we have a shopping creche locally that take sn children up to 9 - this is part of the shortbreaks initiative.

he does go to an afterschool club at the local special needs school which they run 1 day a week most weeks during school term time and he does a week there in the summer. his main stream school run a holiday club but it is very expensive. he goes a couple of times in the hols but dont know if i will be able to afford it for much longer. the main thing i am looking for i guess is support in parenting a child with ds. i find his behaviour quite challanging sometimes, well a lot of the time actually! i think a lot of this is to do with my ex and his complete lack of ability to understand that our ds needs routine and doesn't understand when he changes arrangements to see him at the last minute.

Hi Auntiebob, my DD3 has DS, also diagnosed with ASD when she was 4. She is also now 8 years old. The support I get comes mainly from meeting other parents (dd3 is at a special school) although none of the parents have a child exactly like mine, we do have things in common. MN is also v important to me. I used to attend DSA group meeting when DD3 was a preschooler, but haven't had time to do that in the last few years.
I found DD3's behaviour has become more challenging over last year or so. I asked for an earlier appt with consultant and have also seen a pyschologist which was moderately helpful (more so than I thought it would be TBH!)
What sort of things is your boy doing behaviour wise?

Does the sn school run a parent support group? They may have support you could join in with although not DS specific. I felt completely alone when ds was in ms, but now get some support via other parents ( and staff!) now ds is in sn school. Generally there is not much support for parents after school age is there?

i did speak to his consultant about his behaviour and that was when we were referred to the learning disabilities team but am still on waiting list. basically he is extremely stubborn often refuses to do things and if we are out will either sit in the middle of shops and not move or will run off. is quite difficult when u have a 2 yr old and a 4 mth old!! he can also be quite verbal and occasionaly aggresive. he can also be an extremely loving and very good boy but u never know wot u are going to get!!

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