When it gets too much, who do you talk to in RL?

[siblingrivalry]

DD1 has been incredibly demanding over the past couple of weeks (in middle of ASD dx) and TBH it's getting me down.

I have looked into going to a support group next month, but I really feel like I need to talk to someone, and there just isn't anyone .

DH doesn't really 'get' why I am so upset - but then he doesn't deal with the day-to-day dramas, as he is at work til 6.

My PIL are in complete denial and are driving me mad with their bloody stupid comments.

I have a couple of friends I could talk to, but they just don't understand what it's like on a 'bad' day. I feel as though they feel awkward, because they just don't know what to say.

Who do you all talk to when it gets too much?
TIA

[vicsta]

No-one except DP. Nobody else understands and sometimes I'm not sure he does too. Friends and family in complete denial about DSs condition as he is only 3 months old and doing exceptionally well, but it won't stay that way, which only I seem to understand. His severe brain damage hasn't cured itself and his problems are all ahead of him . I come on here with my worries. Sometimes I just read other peoples threads to put things into perspective. Its hard when people don't know what to say in RL, so I tend to only share the good stuff and deal with the bad stuff myself. There's always someone to listen on here, so keep in touch.

[dustystar]

I talk to dh but he can get stressy so i also talk to my sis, my mum and a close friend whose dd has sn too. Of all of them I find its my friend who really gets how I feel. My sis and mum are great but its my friend who really understands how much even the small stuff can get you down when you're dealing with it day after day.

[kt14]

siblingrivalry, I could have written your OP myself. It is difficult, as DS1 can appear very mild and I'm sure the Pil's just think I am totally neurotic and pushy. I have a couple of really good friends who do their best to understand, or my parents are usually very good.

We have something called face to face in our area, they have regular Oasis meetings and set you up with a "befriender" who you can chat to. I went to one of their meetings and they were very friendly.

[twocutedarlings]

I am very lucky that i have a RL friend that totally understands my DD (a little to well tbh ), and will listen to my rambleings whenever in need to rant.

The support group will help siblings i go to one and ive found it really helpfull.

In the mean time just keep posting!!! we will always be here .

[sphil]

Only DH really. I have one friend locally who is very willing to listen and is very sensitive, although she doesn't have any experience of SN herself. I also belong to a support group, but in general their children have more obvious challenges than DS2, so I find myself in the supportive role more often than not. My problem is that if things are going badly with DS2 I can't talk about it without crying and I HATE crying in front of other people. So I tend not to do it, except on MN (and to Jimjams on email!)

[vicsta]

Sphil - I do the crying thing too and I hate it!

[streakybacon]

My support group is great. Last week, when J had his meltdown at school and the exclusion, there were five people I could talk to straight away. One dropped everything and came over to drink wine and let me talk it all out. Her son is a few years older than mine so she's been there, done that with the AS professionals and I know she can really relate.

The problem is, you don't build up a circle of emotional support overnight and I remember feeling odd-one-out when I first joined the support group. It takes a while to get relationships going to the point where you can rely on others.

The support group is run by Barnardo's and J and I are involved with several staff there because of different groups. They're great for supporting and advising on a professional level.

Tbh I don't find it emotionally helpful to talk about such stuff online, because in RL I need people to understand my grievances about lack of services and support locally, although I do get good practical support here and other forums. It also helps if people know your full story - online you're more anonymous and it takes time to go into detail about your issues before people can understand enough to give help.

[2shoes]

my freind, I met her when dd was at nursery as so was her dd. I don't see her often, but when I do we have a lovely chat. we have so much in common as both our dd's have cp and are nearly same age. yet cos they are at different schools, we can give different slants.
I also chat to my other freind who's ds is in dd's class.

[pagwatch]

during diagnosis I really couldn't talk to anyone. DH wasn't in denial but he just found it so upsetting and his 'style' is just to gradually mull things over.
My family were dismissive. Dhs familt totally freaked out . So yes initially I was very isolated.

I also initially avoided RL parents as I was finding it hard to believe that I was not going to have a 'more of the same' life. Joining RL support groups would have made it all the more real for me. And I was already struggling with the notion that I had somehow caused DS2's problems

I found on line support groups helpful as people can be sooo honest here.
And once DS was at an ASD nursery I found the staff and other parents brilliant.

Now DH and i can talk all we want to and I have many friends who totally gets DS2 and to whom I can talk .

[siblingrivalry]

Thankyou every -I am thrilled to have so many responses. And thanks for offering to listen.

I think streakybacon hit the nail on the head when she said that it takes time to build up a support network. I suppose it doesn't help that I have this huge fear of 'putting onto people', so I tend to bottle stuff up.

I don't cry very often as a rule -I find it hard to let go -but lately I seem to be crying quite a lot. The other day,dd was very stressed (loads of running in circles, humming and handflapping) and it distressed me to see her like that. When I went to bed, the tears came and just didn't stop.

I found myself thinking back to when dd1 was born, when I could hold her and protect her from everything. I felt guilty, because compared to lots of other children with SN , her needs aren't too severe. I kept thinking about all of the signs that were there from the start and feeling crap that I didn't notice them. Then I was worrying about how much she is struggling at the moment and wishing I could take it away from her - not realistic, I know!

Then, this afternoon, MIL said that dd 'needs to learn to just get on with it'. I was soooo frustrated.

Thankyou for allowing me to indulge in a moan-fest .
MNers are the best x

[streakybacon]

Siblingrivalry - do email me and we can chat.
x

[siblingrivalry]

Thanks so much, SB, I will later tonight if that's okay. Very sorry, but the thread with your email address on has disappeared from my 'threads I'm on'. Could I trouble you for your email address again please?
Speak soon x

[streakybacon]

[email protected]

I may not get the chance to reply and arrange a chat till after the weekend but will do my best.
x

[Marne]

I only talk to dh as most people i know don't understand ASD, most of my family seem to think its just a stage they go through, some people just think dd1 is naughty. I have one friend who i kind of talk to but i think that she thinks i use ASD as an exscuse for the dd's behaviour.

Its nice to be able to talk on here.

I did meet a lovely lady today (at dd2's soon to be playgroup), her little boy has DS, it was the first time i spoke to a rl person who has a sn child.

[siblingrivalry]

SB, no rush, I will email you my details and will just chat when you get a minute -I know how manic it is at weekends!

Marne, I totally know where you are coming from with people thinking ASD is a stage, or an excuse. That's why I don't bother telling people much!

[Seuss]

We have coffee/whinge mornings at school that are v. supportive. Otherwise I have a friend who moved abroad and now gets v. long, v. ranty e-mails - I see it as just punishment for bogging off!

[mm22bys]

DH, mostly, I have one RL friend who knows all about our struggles but she moved away recently .

Mum rings up all the time but most of the time I don't want to talk about it.

Other people in RL jsut don't get it, I am actively "avoiding" a friend at the moment because I couldn't handle seeing how well her DS is (well, he's just NT, so just doing what he should be doing!).

I haven't found any support groups yet, I have been to some Sn playgroups but have absolutely nothing in common with the other mothers there other than the fact our kids have "needs" (most of them can't even speak English so they provide interpreters).

Sometimes I think I am in my own (well with DS2 as well) bubble...

[TotalChaos]

a bit Dh, a bit my mum, a bit a few good friends. tbh I find the ladies on here have been the best support. The one time I tried a RL support group I ended up feeling a bit Munchausens as DS doesn't have an ASD DX - felt I was there under sufferance.

[Peachy]

Not many people

I have a friend in Someret who will listen for hours (she's about to become ds4's Godmother), we've been friends for years, through her parents deaths, the loss of our mutual schoolfriend, all sorts.

Mum is useless- she makes factual comments. I cried once years ago becuase Dh was ill, she said 'well make a decision whether to stay with him then call me back'. when I called her after Paed confirmed that ds3 was SN and I was sad, she had a knock at the door and said I'll call you back- she did, 3 days later, and said 'it was important so I amde the effort'

erm, cheers then

The HV suggested Samaritans are good to talk to and not just for suiicdes- I cant blame her for her suggestion, when people come over I am great at talking at them for ages , its the isolation.

Dh is usually fantastic but atm is in the middle of one of his mentally ill phases so its unfair to pile too much on him.

[siblingrivalry]

Looks like lots of us are in the same boat, then. The saddest thing for me is when family (own parents/PIL) are as much use as chocolate fireguards! Do you think it's a generational thing? I keep getting comments like :''Years ago we didn't have things like this.''

Well, I'm always here if anyone wants a chat, a moan or a rant.

[ouryve]

Usually DH and when he's not around, myself! I scrub something and have a good chunter and by the time I'm done, I'm usually ready to give the boys a hug (whether they want one or not) and start again.

[rivenhasaparrotonhershoulder]

I have no-one in RL. Waaaaaaaaaaaaaaaaaah

[Widemouthfrog]

Sibling,

I know exactly how you feel. My Ds started the diagnostic process this time last year, just after starting school in reception. I could see the other parents all forming into their little groups and i was on the outside dealing with a tantruming child and no one knew how to deal with either me or him. It was a very bleak time and I felt very isolated. Yes, and I cried alot too. DS just didn't seem to feel the emotional impact that I did and other family members were still in denial.

Things will improve, I promise. I am now making a network of friends that accept my DS and are prepared to listen though perhaps they cannot always understand. My local NAS group has shown me that what I am dealing with is perfectly normal and I am starting to feel more comfortable now we have a confirmed diagnosis - it has given me confidence about who my DS is, and slowly family are beginning to understand and be more supportive. Friends that cannot deal with this are slipping away, which hurt at first, but now I am realising that the ones that remain are absolute rocks. The good ones will not feel put upon. As strakybaco said, it will take time but you will reach this point.

The most important part is coming to terms with your DDs issues yourself - it will always be difficult but it gets less raw and you will feel stronger. I think the uncertainty pre-DX was the hardest part. I personally felt a huge weight lift when I saw Autism in writing and I knew what I was dealing with was officially recognised.

It may be worth contacting your local NAS branch. As well as support groups, they can tell you about local 'help!' programmes which you can often attend pre-diagnosis and it is a way of meeting other parents of newly diagnosed children.

I would like to add, because I have posted about this to you before, that the biggest turning point in enabling our family to cope has been getting a statement in school and fantastic 1:1 from a TA whose own child is AS. It can feel overwhelming when you are dealing with so much, but I would suggest requesting a statutory assessment is almost more important than getting your diagnosis. School is such a big part of your DDs life - if you can make this easier then everything else will to follow.

Sorry about the long post - just my thoughts.