Talking about special needs

[AlisonJP]

My DD1 aged 7 has just been diagnosed with Dyspraxia and I really want to be able to talk to some people with experience of special needs and even to be able to talk to my friends to get support / advice.

At the moment I have only told a few close friends who have been brilliant but otherwise, it feels like a bit of a taboo subject and something you really don't talk about.

In some ways, I don't really want it to be a big secret but I am conscious that other people don't talk about it and also I am concerned that people will start to see DD as a label rather than a whole person.

Does anyone else feel this way or have any words of wisdom.

Thanks,

Alison

Hi Alisonjp, you ask if anyone feels the same and I have at times. You ask for words of wisdom and I can't say that I am wise so it may not be right for me to give any advice but what I can say is that in my circumstances I have found that very few people really seem to understand and that I used to find it both upsetting and frustrating but now I try to just accept it. How can people understand if they haven's experienced it? so I try to help them understand by being open and honest whilst protecting my own feelings where I possibly can. But this seems to get easier over time and if people exploit any vulnerabilities because of openess then shame on them really.

We aren't in control and nor can we predict the way others will respond to what we tell them and nor can we control how others perceive labels all I think I can do as a parent is fight my childrens corner as much as I can, reflect on what I and others do, take responsibiltiy when I get it wrong , (which I do often) and ask others who get it wrong where my children are concerned to do the same, no matter who they are or what positional power they hold.

I don't know if what I have said will help or sound like a load of old tosh but I wish you luck with how you proceed, you shouldn't have to feel alone but at times it can feel that you are.

When you get a diagnosis for your child you don't get fairy dust to turn you into someone who can cope without issue or who knows what to do all the time, you just adapt over time and hope that you will meet people along the way who will kick you up the bum when that's needed and support you when you are about to crumble.

Remember to take care of yourself too Alison and post here and in other forums if it helps, would be my advice.

Hi Alison. I found that 'old' friends made before children, didn't change at all, maybe because they knew me as 'me' and not just as someone's mum. They didn't really understand but were happy to discuss and offer support. Those friends I made in toddler groups and at school were less helpful. It seemed that our friendship was more about the fact we had children in common and now there was less 'in common.'

Also, people just don't know that much about SEN unless they come across it personally or in their jobs. Dyspraxia might be seen as 'just being a bit clumsy' when it really has bigger implications. Sometimes it's good that people misunderstand because they won't see the label as anything to worry about, which can make life easier. Conversely they may not excuse behavioural issues quite so easily, but at least school should recognise his needs. (especially if you educate them)

It there a SN support group locally that you can join? One that isn't DX specific? Other people in the same or similar boat have always been my best source of support. Here is a good place to chat and vent, but a 'real' chat over RL coffee makes you feel less isolated.

Hi Alison

My DS (aged 5.11) has also just been diagnosed with dyspraxia as well as sensory modulation disorder.

I agree that people think that it is "just" dyspraxia as they think that they know what it is which really makes me mad. I have a friend with a DS with ASD and others are suddenly coming out of the woodworm who also have children with SN. Some of these I have known for years but have kept their child's DX to themselves which I find a bit sad. You may well find that others are in a similar situation as yourself if you talk to them.

As I am at the "fighting for my DS" stage of the process, I am telling all and sundry - inc my DS who came out with the best line ever......

"So she (the stupid, ignorant, waste of space class teacher) was wrong then!

I really wanted the label for DS as it is an explanation for his behaviours, lack of progress, etc rather than him just being naughty/ lazy/ delete as appropriate.