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Here are some suggested organisations that offer expert advice on SN.

I don't know why I'm doing this, is it grief?

(8 Posts)
eandz Fri 10-Jun-11 12:01:35

But for some reason, after my DS was diagnosed a few weeks ago I've had this urge to help other charities. I don't know if it's part of the grieving process--I don't feel thaaat bad, but something deep within me wanted to sign up for the whizz kidz neon night walk. I don't know, did any of you go through this? What do you think?

also I've gotten myself committed to this, so incase you want to donate money, feel free to at: here

but in all honesty, am I going to end up doing lots of this stuff? am I doing it to escape for a bit?

Becaroooo Fri 10-Jun-11 13:10:12

You are doing it because you care eandz

Good enough reason in my book

x

coff33pot Sat 11-Jun-11 12:44:30

I dont know how I am going to react when I finally get a dx to be honest I have sort of resigned myself to accepting that my ds needs help and so have already started.

I would say this reaction is "motherly instinct" smile Your child has had his dx and that sort of finalises things in your head so therefore he is now in a nother bracket in his life. The protection instinct now kicks in and obviously you want everything possible to help and guide your child. And mothers are not the type to sit back and do nothing! I would say its your way of accepting the situation and going all out to improve things for any SN children but in the back of your mind you know your ds is going to benefit from it.

Good idea and good on you smile

Pigglesworth Sat 11-Jun-11 13:23:39

Perhaps it's a way of being able to "do something" when there is a huge area of your life that you cannot control.

Just wanted to warn you though to be careful of internet security - your real name is on that link which means that any other posts you have made can be linked to your real-life identity and perhaps that of other members of your family. This is a forum that anyone can read and I don't know how happy you would be to have details of your personal life broadcast to anyone with access to the internet!

Wishing you all the best.

dolfrog Sat 11-Jun-11 16:19:48

eandz

I founded and help run the charity or voluntary organisation that help those who share my childrens diagnosed disability some 9 years ago, it becomes a bug to have a better and more informed understanding of the issues our children, and even ourselves may face on a daily basis, and to explain the support we may need.
You may need to find the best research information to combat the false information currently out there, which could be due to a lack of good quality information, the marketing needs of a program provider, book authors, etc, and you may need to take on the current professional organisations to improve the research and understanding of the issues.

privacy and security can be a problem, especially as to gain credibility you can not keep on changing you internet ID or forum ID. Dolfrog has been my internet ID for over 10 years now, and many can now find the real me quite easily. You can also become the victim or the target of spammer, the worst for me was 4000 in 2 hours, a couple of years back (it took me a week to delete them all)

The more parents who follow this option the greater the public awareness and understanding of these issues become. We can not just really on the professionals who have many other things they need to do.

dolfrog Sat 11-Jun-11 21:15:59

eandz

From our experiences of trying to run a national support organisation what we have realised is that there is a desperate need for many more local support groups to provide more specific localised information about local schools, local support and diagnostic professionals, and very importantly the Local Authorities themselves which all of which have different ways of approaching what to us seems the same situation.
And most important of all a local support group can help others feel that they are not alone with their invisible disability related problems

lisad123 Sat 11-Jun-11 22:49:31

I help with 4 different charities since I gave up work!!
I sit as a trustee on the SN school DD2 goes to, am junior co-ordiantor for a ASD girls group, I work as an advisor for a ADHD/ASD project, and I do alot for the cancer charity that DH has.

I do it to fill my time, to feel like im making a difference to DDs lifes and other kids. And sometimes it because its the only way I can force a change.

bigbluebus Sun 12-Jun-11 10:54:27

My DH works for a charity for people with a particular disability. He told me that he sees many Dads throwing themselves into all sorts of fund raising activities for charities connected with the condition as their way of coping with a) the dx and b) often the feelings of guilt as the condition is inherited.

It is a natural response to want to 'do something' and often the mum's time is taken up with the caring aspect of it all. If you have time to fit something else into your day - then brilliant - it is an escape route and gives you the feeling that you are doing something positive. I did a 1/2 marathon a few years ago and raised funds for the local childrens hospice. The training for the event gave me 'me time' and the money raised was an added benefit - it was also something I had never done before so the sense of achievement at running 13.1 miles for the 1st time at the age of 39 (wanted to do something before I reached 40!) was fantastic. Having given up work to care for DD, I had felt I was not doing anything worthwhile - other than caring for DD.
Now I do lots of voluntary activities like lisad which are connected with services for children with disabilities in our area. It makes the days go quickly, I meet lots of new people and have acquired new skills. Should I ever have the opportunity to return to work, hopefully I will have something valuable to put on a CV.
There is no right or wrong way of coping - everyone is different - do what feels right for you eandz.

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