I've been asked to do a talk!!

[kirstie]

Hello everyone,

I hope you're not all to stressed out with Christmas shopping

What it is, i've been asked to do a talk by SPECTRUM, our multi disciplinary early intervention team (funded by the LEA) to a meeting with social care workers My role is to tell them how it is for us as parents, coping with diagnosis, dealing with challenging behaviours what sort of experience i've had personally with respite and how parents feel about it. I feel like this is a graet oppertunity to tell it how it is, how bad the situation is for respite and how we can best work together in making the families and professionals communicate effectivley so our children get more out of these services. Does anyone have any input? We are the ones who really know what it is like to cope with every day life and how hard it can get.

I think this is like a training day for the social care workers.

Thanks folks, any ideas would be greatly appreciated.

Take care,

Kirstie.

[annie]

Hi Kirstie,

 

I did the same thing for a teacher training session, I really enjoyed it. I just told everybody what we had been through, no holds barred. Afterwards, the teachers asked me questions which was a bit good, because I felt that it showed they were interested in learning about AS/ASD's .

 

Good luck,

Annie

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[elainem]

Hi,

 

the major realisation for me is how fragile my son's world is. We seem often to be tootling along quite nicely and then the tiniest thing will cause a major disruption to his (and ours) life. It is as though he is permanently teetering on the brink. It reminded me that it is very easy to fall into complacency around our children and forget to do some of the things they need eg visual timetable, prep etc

 

Elaine

[elun1]

Hi Elaine

I think it's useful to explain that although diagnosis is difficult and painful in many ways it's really only a starting point for families. There is so much to sort out and there is no 'set procedure' for parents to follow as the needs of their child will change over time. Families need a lot of support which needs to be ongoing and present without fighting for it but unfortunately this rarely happens. Our lives have become easier in some ways since we got a 'key worker'. She is lovelyand a great support to me and my children but we are one of the lucky ones. There is a real shortage of such workers but I think every family of a newly diagnosed child needs one. They help you with all sorts of things like liaising between the many agencies/professionals who will be involved with your child. The first 2 yrs after diagnosis would have been much easier if we'd had a key worker. Getting respite care is a nightmare where we live and not sorted for us yet. My experienceof social services has been very negative so far and I don't think I'm alone in this so perhaps that's an issue that could be looked at.

Anyway best of luck with the talk

Elunx

[elun1]

Sorry not Elaine I meant Kirstie!

[Corcaigh]

We personally felt bullied and battered by school staff. I wrote this in other posts and I know I am being repetitive, but it is shocking that a parent has to suffer for the lack of competency (and brain ) of some "so called" professionals AS WELL AS the general lack of support. I found in my track a couple of wonderful individuals who helped me and my husband in a wonderful way, but apart from that it was struggling uphill all the way.

The diagnosis... for us was a relief (we had known it was AS for a long time), as finally, officially, it was NOT OUR FAULT anymore, I mean, it wasn't bad parenting and was written on paper. The school assumed that we were bad parents until the day we withdrew our son, anyway

I'll leave it here or I'll get peptic ulcer It looks like all the parents here are going through the same struggles, though.

Good luck with your talk

 

Martina

Edited December 6, 2005 by Corcaigh

[mum22boys]

Hi Kirstie,

 

Just wanted to add that for me life with M is like 'walking on eggshells'. Who knows what or who will 'trip' him that day. I feel I am constantly on guard and watching what i say or do all the time. Just calling his name 'too many times' can cause a major problem.

 

Also i feel (as we are at the pre-diagnosis stage) the support is very poor. I have a wonderful SEN health visitor but other than that I have no one to turn to (proffessional wise) at all.

 

Good luck with your talk - I know you will speak for us all.

 

mum22boys <'>

[kirstie]

Thanks guys,

I will certainly do my best in speaking out for all of us! I can really relate to being made to feel it was all my fault and the one thing some of these professionals need to stop doing is pointing the finger at us and our parenting skills, personally speaking i plied enough guilt onto myself as it was, questioning everything i did. I remember knocking on doors desperate for help when Lewis was younger they weren't slammed in my face because they were never opened in the first place. I went to one child and family centre where i had been in tears trying to explain how hard it was trying to cope with my son and they said "Come along for a couple of hours" so along i went, but i really couldn't handle sitting there listening to other mums telling each other how little Jimmy was eating all his greens and counting up to 100 all by the time he was 12 months (maybe a slight exagerration, but you know what i mean!!!) i wanted time AWAY from my son. I know that sounds harsh but i wanted time out even if that meant only to try and find the bottom of the ironing pile i was desperate. So i will definatley be telling them how much we need respite and why, and also how hard these supports are to access without a diagnosis.

Wish me luck, they'll probably have to drag me off my soapbox once i get started...

Take care,

Kirstie.

[Kathryn]

Good luck Kirstie, I'm sure you'll do us proud - is it today?