Mumsnet pages on SN: What info should they contain?

[morningpaper]

Hello!

Right, Gerry has asked me to put together some SN pages for Mumsnet. This needs to be a joint venture because I normally just argue on the AIBU boards.

The editorial pages are the stuff in blue at the top of each page that you might not have even noticed: e.g. Conception, Pregnancy, etc.

Here's the pregnancy area for an example of how it is structured.

So to start with, can I have suggestions for content / pages?

The toddler book sections were:
? I Think Something is Wrong: Respecting Your Gut Feelings
? Seeking a Diagnosis
? How You May Feel
? Reactions from Friends and Family
? Managing the Challenges of a SN Toddler
? Special Educational Needs: 'Statementing'

But that is very much a mum-of-toddler perspective and obviously wouldn't apply to lots of children/situations.

There are normally a few MAIN sections which includes :

• blogs (a blog section for the blogs of mums with SN children would be nice I think? What do you think?) and;

• products (do we have any product reviews etc. for SN specific purchases? I don't know if this section would be useful or not)

• Should we look at individual SN diagnoses? Educational issues? support issues?

I will set up a separate thread for us to suggest useful links.

Over to you for your thoughts. Let's get this show on the rooooadddd

educational is a big issue for lots of us

I think SN book reviews would be really helpful. Anything from books about specific SNs to books about therapies, other peoples' experiences, and general resources.

usefull contacts

Specialist equipment and products would be very useful.
Courses for parents
Money your entitled to and how to go about it.

one of the things I found useful was toileting tips,( where would I be now if my friend hadn't told me about the slipper pan)

sleep is a recurring theme...
medication?

relevant charities - both in terms of support and funding specific items

coping with lots of hospital visits especially for those with more than one child

dealing with not getting a diagnosis (i.e. where a child has SN but no clear name for what's behind it)

Strongly agree re special needs book reviews.

When I first came on here I didn't know where to start, I'd never even heard of a statement, let alone had a clue how to apply for one. That info would be very useful. Likewise a contacts list - charity helplines etc.

A kind of glossary would also be really good - definitions of the roles of people such as educational psychologists, a brief overview of certain conditions would also be useful. I often read posts and have trouble relating as I don't know a lot about the condition, it would be good to have something to refer to.

Does this help?

Eating problems

i agree a contact list of websites would be good and also the list reducedfatkettlechip suggests of what different peole do ie clinical psychologist, cahms, etc etc

What you can get for free? Or what you are entitled to?

How about something on benefits you may be entitled to. There are always plenty of threads about dla, how to find help completing the forms (very hard to do on your own) and how distressing they can be. And then of course how to appeal and who to contact!

Social services - e.g. respite, dp's, keyworking etc.
& Health - professionals; multiple appointments etc.
Play and leisure opportunities
Childcare
Equipment
Behaviour management
Toiletting (or not)
parents (and children's) stories
Disability politics and high profile figures
Sschool/Mschool

I like donkeyderby's 'play and leisure opportunities'. To include holiday places/after-school clubs/ play centres and tips on negotiating major attractions/how many escape routes a place has/where you can get special passes. Maybe not as serious as some areas but would save lots of trawling the net.

sensory issues or information on - as some people like me for instance didnt even realise what my ds was doing was a sensory issue and could have easily been over looked

it was our wonderful amber that informed me on how to deal with this and was in deed a sensory issue

i only found out the other day we didnt need to pay for dvds in library as ds gets DLA so things that were entitled to cinema cards etc where we can get in free

or carer goes free i should say

disability legislation

For me, thinking about SN started before DD was born. So I would like to see SN pregnancy issues too: to cover things like fetal MRI scans, but also the emotional stuff you might be going through unsupported--a lot of partners can't relate to the way you feel about the baby before it's born.

Mumsnet guide to life on SCBU

Who the professionals are and what they are supposed to do (including how to find out what they should be doing)

Looking after you/your relationship/your child's siblings/your financesthe practical stuff, sure, but the emotional stuff is important too. There is no one way to reactit depends on the emotional baggage you're already carrying.

Transitions (nursery to reception, primary to secondary school, children's services to adult services)

Getting your team of health professionals to work together (children with complex needs may have 30 or more clinical staff, plus education people, to deal with at once)

Parent power--how to get involved in your child's treatment, how to start a support group, how to get parents represented on the committees that allocate funds to disability services AND how to get paid for your time

Things that made me feel better
Sharing the things that really helped when times were desperate...

etc etc
have to go now but will check back here if I have any more thoughts, or feel free to contact me on bergmann dot grainger at bt internet dot com

Information on local/national support groups for parents and siblings.

thanks for what's here so far - I am going to start looking at this today!

What to do when you feel you cannot do it anymore! (ie support/ help/ respite/ residential care etc).
Moving on /transitions to adult care.

From my personal situation I agree with reducedfat on the statement issue. Guidance on how to get through the statments proceedure and what to expect, and how to prepare for the meetings where the medical profession overwhelme you and don't listen (Often ending in problems)

The approach with schools, guidance on how to handle the school sn process.

How about somewhere were people can post about places they would reckomend for kids with sn (especially those who will happily go that extra mile to help or just very well setup to cope.

aha is it this one?
www.snapcharity.org/