Contact a family- helpful???

[chickensaresafehere]

Went to see cons paed this week,explained that there was no improvement in dd's(4.7)speech,as in she still completely non-verbal.ASD ruled out.So she is classed as a fairly rare case,as yet no dx.

Cons paed is writing to neuro paed about where would be best to refer her to regarding her speech as SALT & comm paed don't know what to do with her either.Still wondering why cons paed thought long & hard over the fact that she wasn't toilet trained yet & still in nappies

Anyway to get to the point,I said that I felt very isolated with dd's condition & he recommended 'contact a family'.
Has anyone signed up & have you found it helpful???

our local contact a family is quite active, they run coffee mornings and get guest speakers in every so often and produce info sheets a few times a year on what's going on locally so from that point of view they've been pretty good. If you think it may be something genetic there's always swan that may be worth a look.

Contact A Family try to help by providing contact with other families who share similar problems who can then help each other provide mutual support, and understanding. And as a result of previous families who have shared their experiences, and have been willing to help others, Contact a Family built a support network and have some good information sources.

If the condition your DD may have is really rare you may be one of the first families to make contact, which makes you one of the experts regarding living with that particular set of issues, and finding ways to cope and help, until another family contacts them with similar issues.

They may not have instant answers but may be able to put you in contact with parents who are in a similar situation and with whom you can possibly provide mutual support and help.

Contact a family contacted us when we set up APDUK back in 2002, and suggested how we could improve our web site design, and have since referred other parents , who have children who have APD or even have undiagnosed APD themselves to our web site or a link to our help line.

I think they are excellent as an organisation. Not had much to do with them except ask for advice and they were helpfully brutally honest and seemed to really know their stuff.

We have a very active branch in our area (Wandsworth) and it's been fantastic- coffee mornings, talks, outings, advice on benefits, a member of staff helped me to fill in the DLA form when I was too upset to do it on my own- really really good, would recommend getting in touch.

I have found that the contactafamily helpline is very good. They know so much and if they cant answer your query will put you into contcact with someone who can help. I have used them for enquiries on welfae benefits and legal issues.

welfare- typing in a hurry

They have recently been awarded the national SEN helpline by the Department for Education.

I found them very unhelpful. As we have no diagnosis they couldn't/wouldnt put us in touch with any local families. :(