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Original poster

Does anyone know of any support groups for parents of children with ASD?

29 replies

siblingrivalry · 14/09/2008 14:41

...please?
We are currently going through a dx for dd1, with CAMHS repeating only last Wednesday that she is likely to have ASD.
I don't have anyone in RL to talk to - unless I want to be preached at .
It's got to the stage where I am feeling quite down about it all,mostly cos I don't know if my feelings are a normal part of dealing with the dx.

Is anyone aware of any kind of group where parents can meet up or talk over the telephone? I live in Durham. TIA.

I would also like to add that the support I have had from MN has been amazing. I just feel as though it's too much to ask you all to keep putting my mind at rest.ATM, I could start a new thread every day

OP posts:
TurtleTuck · 14/09/2008 14:56

Hi
I have been told about this group but I have not been to a meeting yet, so couldn't tell you what it is like. I am planning to go to October 2nd meeting if I can get myself organised. Sorry you are feeling so down at the moment. I still have days like that as well. HTH

Original poster
siblingrivalry · 14/09/2008 15:07

Wow, turtle, thanks so much. I think I might give them a ring, should have a dx by then.
You have made my day!

OP posts:
TotalChaos · 14/09/2008 15:08

nas website should have details of any local groups.

Original poster
siblingrivalry · 14/09/2008 15:16

It didn't occur to me to look on nas website . Will blame it on lack of sleep! DD2 seems to have forgotton how to stay in bed!Thanks totalchaos.

OP posts:
unfitmother · 14/09/2008 15:41

NAS have local groups everywhere.

Widemouthfrog · 14/09/2008 16:37

Definitely try your NAS local group. I go once a month and it is so nice just to be able to chat to other parents who immediately understand. They may organise local activities and programmes too where you can meet other parents.

unfitmother · 14/09/2008 16:41

I'm trying to summon up corage to go to ours next week. I've never been before and don't really like groups but I've heard you can borrow books from the NAS library so want to do that.

Widemouthfrog · 14/09/2008 16:47

Unfitmother-do it! I don't really do the group thing and was anxious about going to a new group as I thought they might be cliquey, or that somehow my difficulties with my DS would not be considered serious enough. My doubts were unfounded - I learned so much in the first meeting and it made me realised just how accurate my DS's diagnosis was. We were all struggling with the same issues. It helped me with the process of acceptance, and also gave me a lot of positives to focus on.

unfitmother · 14/09/2008 16:53

Thanks WMF, I'll go.
The meeting is on Weds 25th of Sept, I'll be brave.

Tclanger · 14/09/2008 17:38

This reply has been deleted

Message withdrawn at poster's request.

Original poster
siblingrivalry · 14/09/2008 19:11

Great, Tclanger - I will be looking into that thanks.
Thankyou everyone, you have helped me to make my mind up. I am also nervous about joining groups and looking like a bit of an imposter, as dd often appears NT. However, I wouldn't be exaggerating to say I am desperate to talk to people who are in the same position and to meet other children with ASD. My RL friends try, but they just don't 'get it'IYKWIM.
I am finding it all a bit lonely TBH. Do any of you experience this?

OP posts:
Tclanger · 14/09/2008 19:48

This reply has been deleted

Message withdrawn at poster's request.

Original poster
siblingrivalry · 14/09/2008 20:06

Isn't it hard not to get frustrated though? I try to tell myself that if I was in their shoes, I probably wouldn't understand either.It can be hard though.
On Friday night,dd had an awful time at a party -there were over 30 kids there and she got overwhelmed. Cue tears, running back and forth and anxiety. Anyway, I tried to talk to one of my friends about it afterwards (I haven't told many people)and she just didn't know what to say. I ended up feeling really uncomfortable and regretted saying anything.

OP posts:
unfitmother · 14/09/2008 20:50

IKWYM, only one of DS's friends mums knows about DS's Dx of AS, this friend is on the CAMHS waiting list too.
DS looks so NT that I'm sure they wouldn't believe me!

Tclanger · 14/09/2008 21:47

This reply has been deleted

Message withdrawn at poster's request.

Original poster
siblingrivalry · 14/09/2008 22:00

Thats sad for you Tclanger, especiaaly when you welcomed her child. I am certainly beginning to realise who my friends are. I have felt as though I am boring people and,like unfitmother, I seem like a fake when dd looks so NT. It's just easier to keep it to myself and save up all my ranting and worries for MN!

OP posts:
Tclanger · 14/09/2008 22:16

This reply has been deleted

Message withdrawn at poster's request.

Original poster
siblingrivalry · 14/09/2008 22:24

Thanks for the reassurance, it really does help. You seem to be reading my mind - you know about all of my worries. God bless MN!x

OP posts:
streakybacon · 15/09/2008 07:44

I go to an excellent ASD support group run by our local Barnardo's. Might be worth finding out if they do something similar in your area.

kt14 · 15/09/2008 13:56

Hi siblingrivalry, I know exactly how you feel, even down to feeling a fraud because your child often appears NT! ds1 is pre dx and according to the family, "he's fine, he'll catch up" but I know that there is something more to it (HFA I believe). It's exhausting and upsetting to try and convince them that he isn't a typical 3yr old, so I've given up trying for the moment. I talk mostly to people on here when I need to, or to my closest rl friends who have been amazing.

It is difficult though because, as you say, people who haven't been in this situation can't truly understand, simply because their own situation is so very different. In a way I can't always identify with the parents of 3yr old NT children, simply because I've never had one. Thankfully DS2 is developing more typically so far, so maybe I'll have that experience later on.

I wish all the people on here lived close by, it would be lovely to have the mumsnet experience in RL.

TotalChaos · 15/09/2008 14:06

yep, count me in with the "in between" feeling, compounded by the fact that DS is probably not on the spectrum but noone is prepared to rule it out, and DS functions very well at school so gets no 1-1. DS isn't quite NT, but I can take him to soft play, cafe, shopping, museum etc, so we are not desperately isolated from the mainstream. DS can pass for normal with his expressive language - but when he gets asked a q it all goes pearshaped.

don't suppose any of you ladies is anywhere near Liverpool

unfitmother · 15/09/2008 18:35

Chester

Original poster
siblingrivalry · 15/09/2008 19:30

Nope- I live in Durham. I wish we were closer -I would love to meet up.
kt14, I think my dd is probably HF too,although we are not sure yet. My PIL are in total denial, so I have stopped volunteering information.
Totalchaos, my dd's expressive language tends to 'mask' her difficulties.

We had first OT appointment today, with the loveliest therapist. DD has pretty bad sensory problems, so we wil be doing a sensory profile next. At last, the ball is rolling.

OP posts:
streakybacon · 15/09/2008 19:40

Hey siblingrivalry, I'm in Gateshead if you're looking for someone close to Durham.

I thought there were some good support gruops in Durham area. Isn't there an NAS group down your way? I know there's one that organises activities in Chester-le-Street and Consett, will see if I can find details.

streakybacon · 15/09/2008 19:41

Hey siblingrivalry, I'm in Gateshead if you're looking for someone close to Durham.

I thought there were some good support gruops in Durham area. Isn't there an NAS group down your way? I know there's one that organises activities in Chester-le-Street and Consett, will see if I can find details.

Here it is: www.cdasg.org.uk/
They meet monthly in Stanley and DArlington