Support groups?

[TheTimeTravellersWife]

Interested in experiences of support groups. DD has a neurological disorder which we have been told is responsible for causing all of her difficulties, which are ASD, Dyspraxia/Developmental Co-ordination Disorder, MLD, Speech and Language difficulties....is it worth joining the NAS? Mencap? the Dyspraxia Foundation? All of them or none of them? Is there an "umbrella" group for Special/Additional Needs?

In many ways I do not want DD to be defined in anyway by her disability. But I am struggling to get sufficient support for her in mainstream and find I have to push for her to be included in out of school activities. So access to SN activities would be good to have.

Interested in others thoughts and experiences.

I think it depends what area you live in.

NAS are good but they never seem to do much in our area. I think i have spoke to them once and they offered me support when i was thinking of starting a ASD support group.

Cerebra seem to be good, i joined them a few months ago and they seem to offer a lot of support and are willing to help fill in forms and may even talk to the school.

There doesn't seem to be many SN activities in our area, i have started taking dd1 (as) to after school clubs, most people don't even notice she has SN's so i tend not to tell them until she has been for a couple of sessions .

If you have a SN school near you they maybe able to help and offer an outreach service (they will offer the MS school advice and work with them to give your dd more support).

ds2 is registered with the Local Authority & we are sent details of any playschemes & activities.
I have joined NAS but TBH i didn't find an awful lot locally for us the group was primarly HFA, which is fine but still didn't have alot of common ground in terms of learning difficulties, but this may be just our local group & my bad timing.

Our sn school outreach is great & supports ds2 on MS school.

The local SN preschool mother & toddler group also still welcomes parents of school age schildren & runs holiday clubs at the surestart childrens centre, so may be worth a look.

Special kids in the UK also cater for all disabilities, on line forum & they have meetups I believe.... & of course there is MN

These big national charities like MENCAP and NAS seem to boil down to very little at local level. Our MENCAP seems to be for adults only. NAS don't do SLD.

Is there a local SN umbrella organisation who can signpost you to local services? Nationally, Contact-A-Family may be of help.

I have found that two parent-led groups (one is an afterschool club, the other a support group) have been the only truly useful local groups.