Special baby and toddler groups

[used2bthin]

I took DD to one of these when she was tiny and just felt completely out of place. She has a condition that affects her medically, much like diabetes. It takes a fair bit of management and so we get high rate DLA and carers allowance and the other mums were lovely and helped me with that side of things but I felt that DD's problems were very different to the other childrens as they are more hidden and one of the other mums actually looked at her and said there doesn't look like theres anything wrong with her which made me feel I shouldn't be there.

Anyway I am rambling but is there another way of meeting mums in similar situations? I know people through DDs support group but no one locally and really would like to do some sort of group. DD also has speech delay which is not related to her condition so I was looking for makaton type groups but they don't seem to exist in my area. I love our local toddler group and have some good friends with children the same age but would like something with DDs needs in mind even if it was just once a month or so as I find I can get very down about things like what to expect from the future and so on and it would be good to talk to people who had similar concerns sometimes. Anyone come accross something like this? Am I talking nonsense?Probably!

[bubblagirl]

youm probably went in with the its not as bad as some others in your mind

i did when i took ds for the first time he has HFA but comes across so nt and would have many people say what exactly is wrong with your ds i would tell them and they would look shocked

but dont ever go somewhere and feel you dont belong there or that because her needs are not so severe etc i get along with lots of mums at our sn group some children have cp some are just like my ds some are alot more severe but we are all there because our children has a special need and i get on so well with some of the mums

i like to talk to them ask about there children fuss there children and let my ds just explore and get help i never took it as a bad thing when they said nothing looks wrong i used to smaile and say looks can be decieving and change subject

if they had questionsi happily filled them in if it was your first time dont give up yet i felt like this first few times and were part of the furniture now and as i say all the other mums and i get on great its not a place to judge or be judged or feel your not welcome but dont ever go in and feel you shouldnt be there

my ds needs may not be as severe as others in there but we need to be there for his benefit as well as my own and from perservering i have made friends with lovely people keep going it'll be ok x

[needmorecoffee]

I went toa drop in centre for families with disabeld children. Couldn't cope with toddler groups when they would be lamenting sugar in yogurt and I would be wondering if the latest epilepsy med was going to work or if my child was going to be left even more brain damaged.
SN toddler groups are very rare though

[bubblagirl]

what area are you in do you have a local snap centre i have just started a makaton course at mine

[tipsycat]

Have you tried your local carers centre or have you got a childrens centre nearby? Both of these organisations often run Special Needs support groups. I find both of these useful in my area. My DS is 7 and has a diagnosis of ASD, but a mix of parents come to our meetings, and I hope that we make all welcome.

[nymphadora]

I used to work at a Special School and they had one in the nursery class one afternoon a week.

[used2bthin]

Thanks all, I'm in Oxfordshire. I have got a childrens centre near but they didn't seem to know anything about groups like this. I did go to the one I mentioned and the mum who runs it was lovely. Perhaps it was me Bubblagirl, no one was unwelcoming at all but I felt like an intruder somehow because DDs development is not affected by her condition. The fact is that our whole lives are affected by it though so maybe I should have kept at it. Those of you that go to these groups, do you find that there are children there whose needs are purely medical? I think I did ask the carers centre but not sure what a SNAP centre is? Is it the same as a carers centre? I really want to get on to a makaton course in fact I rangg the local tutor today but no reply. It would be lovely to go to a makaton class with DD. I joined sing and sign but we were with the younger babies as hadn't done it before and then the teacher didn't want us with the toddlers the next term as we hadn't completed the necessary two terms to go into that stage. Couldnt face being with even younger babies as DD was already conspicuous amongst the one year olds, I'd have felt worse with newborns!

[used2bthin]

Oh thank you DSS, I will try ROSY first. The one I went to you haven't mentioned but that may be because it has now changed its name. I spoke to the lady who runs Bush babies when DD was tiny she was absolutely lovely but I decided it was a bit too far. I'd never heard of ROSY before so they may well be what I am looking for. Thanks very much again.

[bubblagirl]

the centre i go to snap is special needs and parents has children with all sorts of things from cleft lip down, syndrome , severe autism, muild autism, severe cp and mild cp

i did also feel i didnt belong as ds came across as so normal but gradually got to know the parents and ds had speech delay also and had others with speech delay only there

now i know im there for a reason whether severe as others or not it still affects there life as well as yopur own so have the same right to be there

no one gos to see less or more fortunate and be judgemental were all there because our child is affected in one way or the other to support each other good luck x

[used2bthin]

Oh that sounds great Bubblagirl. I am feeling a bit rubbish about everything with DD atm. Lots going on with her op and it can be quite lonely as I feel I'm banging on about it sometimes with friends or as if I am bitter that their child is healthy. Well my DD is healthy most of the time thank goodness but the usual rules don't necessarily apply with her iyswim. And the language thing is getting to me a lot even though its probably not a big deal it just feels like more to cope with when I/she was already just coping! So other parents who understand the issues would probably help a lot.

[nymphadora]

Push the childrens centre to start one, their role is to support all parents/children not just 'normal' ones (big issue locally here!)

[used2bthin]

nymphadora they have one at a childrens centre in my city but not at my local one. I could possibly get to the other one (it is an extension of the one I went to when she was newborn and I got scared off by the she looks ok comments!) But yes it may be a good idea for me to ask about it at my local one. We should in fact be there today but DD is ill again. We seem to just be stuck in a lot this winter with all the bugs its rubbish!