Feeling a bit in over my head here!!

[MumofOscar]

Hiya guys.

Just joined here last night as i feel so toally overwhelmed by everything at the moment and hoping to find some nice people who know what i mean. DS is 5, has no verbal language (just grunting noises), and a general developmental delay of a year or so. We have no dx. Up until sept we got loads od support from a fantastic portgage consultant, a S&L therapist and obv HV. DS got his statement in the summer and started at a special school in sept.

We saw a genetics blokie last year sometime who did loads of tests but came back with nothing.

Is that it? Does it all stop now? I know he's getting his needs met at school now - sees ST once a week and will also be seeing OT soon - but i kinda feel like there sould be more. Like, i don't really know. We also see a paed doctor lady about once a year but she doesn't really seem to DO anything - just asked how things are etc.

Does any of this make sense or am i just rambling? Thanks for readiung if anyone has got this far!!
Hazel. x

[SuperSoph73]

Hi there mumofoscar. I'm afraid I can't really offer any advice as I don't live in England & our situation is different, but I just wanted you to know that your message has been read. Our youngest son has Mosaic Downs Syndrome so I go through the special needs messages every now and then.

There will definitely be people along soon who will be able to give you some great advice though, so hang in there

[waitingforgodot]

Hello MumofOscar and welcome! Do you have any aims or goals you are working towards? I am currently going through the Hanen Programme and being set different targets to try and encourage DS to communicate more.
I know a few people on here recommend BIBIC who do a full assessment on your child and give you feedback re the areas that require work and how to best approach it. I am sure others will be able to give you advice. Keep posting!

[mysonben]

Hi,

I would want to know more, get more answers, a name for my ds's problems...well a dx i suppose, which should bring more specific support , therapy,...
What were they looking for with the genetic testing? Anything specific?

It is hard when we haven't got all the answers.

[MumofOscar]

Thanks for replies.

I suppose that my point really - I DO want more I just don't know how to get it. It feels like we've reached a full stop and everyone's said "well thats that sorted then" but its so not.

I don't know what the Hanen Programme is, or BIBIC, but will look into that so thanks.

The genetitcist (sp) was of the belief that "there is definately a diagnosis there but not sure what". He had chromosomes checked at birth and had a full set so he thought there may have been a problem with how a particular one was formed or something. Laymans terms I know, but i don't really get the jargon.

x

[waitingforgodot]

Hi the Hanen programme is geared towards kids on the spectrum however there are some good strategies for communication which may be useful to you.
Bibic I think assesses all kids. Someone will correct me if I am wrong. Lots of the mums on here have had a positive experience going to BIBIC then following their tailored programme.

[MumofOscar]

Yeah I think i've come to that conclusion myself, starlight. I've always just seen him as DS. IYSWIM. Now I am realising that we don't get very far without a name for a condition. I don't like it very much but i do get it now. The problem is, I've spent so long thinking we don't need it, its a bit hard to change that. Saying that I do have a habit of diagnosing him myself on occasion when I've read something or heard something and thougth 'Oh thats my child'. But he doesn't seem to fit fully into anything. Little bits here and there but nothing concrete.

Off to work now. Thanks everyone - I don't feel quite so alone now. As I said, just a bad day.

x