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

WMF, your post was so lovely, it made me cry . . .again! I am such a wuss lately. Thankyou for taking the time to post.
DH and I ended up rowing earlier on , because he doesn't understand the impact it has on me. I ended up saying 'just forget I said anything'.
Knowing you, and others, have felt the same has eased my worry and I will be looking into the 'help' programme on Monday. I rang NAS for a whinge chat last week.

I also spoke to the school about a statement. TBH, they are fab generally but seem reluctant to go down that route. Because dd is so 'placid' at school (not so at home!)they think she is coping. However, her teacher said that dd was unsettled yesterday and spent loads of time running round on her own at playtime. I don't think this describes a child who is 'coping'.

It's dd's ADOS on Thursday and once we have the report, dh and I plan to arm ourselves with it and push for a statement.

I started today feeling really lonely and now I feel supported and reassured. Thanks, Tclanger, too, for your post. I think the waterworks will be around for a little while yet though!

Sibling

You have received excellent advice and Widemouthfrog's post is also very good, particularly with regards to obtaining a Statememt.

I can only urge you to apply for the Statement yourselves asap. You know its been done then for a start (some schools sit on these things for months). Don't let the school go anywhere near a Statement application!!. You have far more powers than school ever would have in that regard (you unlike school can appeal if the LEA say no).

IPSEA have lots of information on their website and there are model letters you can use too. You will need to write to the Chief Education Officer and give the LEA six weeks to reply (mark that date on your calendar).

www.ipsea.org.uk

Good luck with DD's ADOS on Thursday.

Attila

Dh mostly and a friend who has a son (my Godson now ) with an almost identical diagnosis to my dd (altho they are opposites in that the side of the brain that they sustained the majority of the damage means he can walk but currently not talk, and my dd can talk but not walk) who I met when we had the babies in the NNU. She has kept me sane over the past 7 years, and I hope I have helped her too. I don't know what I would do without her.

My mother is of no use. On the rare occasions early on I talked about my worries re dd she turned the whole thing round, about how worried she was and how the stress of dd probably caused her breast cancer ( ) so I just keep it all to myself now.

It's good on here too!

Sibling, great advice from others here x

i speak on here and at snap group that my ds goes to

no one really understands they are all comparing there nt children and oh yes x does this etc if i say what he has achieved x has done this for a while now feels more like competing than having someone understrand how important milestones are

and as for a bad day no one really wants to know my family are understaning and know it can be hard but still dont live it so really cant understand exactly how i feel

sorry your feeling down i lost my hair and was so run down for not talking but didnt realise on here could be so helpful and understanding i thought i was alone until i met the nice mums on sn board

Alot of you have spoken about the support you get from RL groups for children / parents of children with a particular named syndrome.

Do you think that makes it easier to access support, help, and even accept your DC is "different"? Do you think it helps with some sort of idea as to what you can expect going down the line?

I am just thinking about our own circumstance, GDD with a few other things added in, but no dr can put it all together. At a SN group I went to the other day, I got the feeling two of the mothers thought he was basically "normal", wanted to know what was wrong with him!

I know I got a lot of support from an on-line diabetes support group (have moved on from there, I wish I "just" had diabetes to deal with!), but haven't found anything for a SWAN child.

I think that's quite common mm22bys, so I wouldn't say that ALL support groups are necessarily supportive. Sometimes you have to shop around till you find one that suits, and unfortunately there's not always much choice.

I know I was very lucky with my group. I was welcomed by all the parents because in my area most parents struggle to get a dx for AS so they all could relate to me and my problems. It was different when I went to NAS Help courses because without a dx I didn't really fit. Not Help2, mind you, they were great and very supportive, focusing on workable strategies rather than the label, iykwim.

It's also useful to remember that a lot of these groups are quite cliquey, so you have to make the effort as a newbie to push your way in and help them to accept you.

That stuff about the groups is really useful, because I hadn't really thought about finding the 'right fit'. My dd usually looks NT to the untrained eye and I have the feeling a lot of parents may wonder why I am there IYKWIM.

Attila, thanks for the link and advice. That's on my 'to do' list for next week. I am realising how woefully uninformed I would be with the fab experience of MNers. You really are fantastic, thanks.xx

PP, forgot to say that your mother sounds like my MIL - how awful for you to have that kind of reaction. x

The best group ting I have found is a SN sports group tun by the local rugby club. the kids are obv. mobile to join, but thats it. Sam isnt either the most or least severe, he's average there, harry just started and he's in the more severe bunch (I can think of 3 similarish) but thats OK too. Te parents there are massively supporive (a huge number of foster aprents attend)

Hi siblingrivalry, I know what you mean...nobody really understands unless they've dealt with a similar issue and so many people want to deny a problem in order to protect themselves from difficult feelings.
MM22bys, I totally agree with the lack of support groups for SWAN kids and echo others' feelings of isolation. It's hard in the playground now that DD is 2 and her peers can do so much morethey run around like little girls and are chattering awaywhilst DD still staggers around like a baby in comparison, and says nothing. At those times I long for a few mates with SN kids.

I talk to family and I am also lucky that I have found a fantastic support group that offers so much. You can go every other week and every chats/moans/offloads. They also have speakers once a month from lea, camhs, ss etc etc They have workshops, I had Reiki on Tuesday and tomorrow they are taking a coach load of us to Chessington and I don't have to pay a penny. It's worth seeing if you can find something like that??? I know lots of parents have benefitted from going and before dd got her dx and her behaviour was hellish it really was a god send to be around people that really understood. I like the fact that nowadays I can help others who were where I was 2 years ago and we all share advice and it's really a lovely place to be. You could contact contactafamily or your local carers centre to see if they have anything similar???

I am also really lucky that my dd attends a unit and I have made so many friends whose children have similar difficulties to dd that I know there is always someone on the end of the phone.

I am actually (touch wood big time) in quite a good place at the moment with dd. She has recentyl turned 9 and I don't know why but my emotions are far more settled then they have been in a while.

I echo what everyone else says about pre-dx for me that was the worst. I think not knowing is far scarier than knowing and for us 2 yrs down the line the dx has been a god send. My dd has asd. HTH

That sounds a fantastic support group Blossomhill. I go to a monthly support group but it's a discussion group with presentations around various SN topics and most parents have children at school--they run a creche but DD absolutely hated it the last 3 times and I ended up having her in the meeting with me, and not wanting to disrupt it for the rest of them, I had to leave

Yeah, I don't know anyone in RL whose DC is like mine. The frustrating thing is that like TotalChaos, I have no specific diagnosis other than language disorder and that's so often misunderstood. Physically and generally behaviourally, DD appears NT, so people just Don't Get It that you might be worried because she, for example, can't tell you when she's hungry or thirsty or ill or what she likes and dislikes or why she's crying and if she hurt herself when she fell down...(need I go on). Yes, obviously, compared to some of the kids on here she's only very mild SN, but you still sometimes want to scream when you're trying to explain to people that DD won't answer their questions because she doesn't talk much and they'll say "Oh, she's just shy" or "Oh, that must be peaceful for you, mine drives me mad with all his questions"...GRRR

we go to snap and my ds compared to other children there looks completely normal when we first started we did get alot of erm what is actually wrong with your ds when i said asd then they were so shocked

but no one is funny with us and all except my ds and have seen first hand that he isnt as normal as he looks with his behaviour problems etc

but the support from staff there and parents is great and there so friendly and no one judges

has taken along time to talk to some mums who's children have more severe asd but gradually we have all realised somewhere we have common ground

Oh my god! Sibling Rivalry you have said all the things that I'm currently feeling. We're currently going through diagnosis and I thought that support groups would be closed to me until we got diagnosis and that feels like its going to be ages away. I need help now. dd1 (8 years old and in year 4) is fairly normal (she's not gone to one to one yet but a specialist TA works with her) at school so like you the school virtually laughed at us when we enquired about whether she'd need a statement. My mum took all three children away for a night to her place and bought them back by 10.00 am Sunday morning and the moment the door closed and my mum had gone she went crazy. At one point I found dd2 (5 years) cowering in fear of her. Both dd2 and ds are nervous of her. To be forced to protect two of your children from the third is awful. I'm soooo incredibly blue. Anyway I'm hoping you wont mind me joining in this thread as I could really really do with some company.

Hi, Wills, welcome to the thread .
I'm sorry that you are going through a crap time, too. It can really help, I think, to just let it all out to people who understand.

My dd does the same as yours -can be totally fine with the PIL, then loses it when it's just us again. I think sometimes people think I am exaggerating her behaviour.
I think that our kids sometimes have to make so much effort to cope in 'normal' situations and around other people that they just fall apart when it's 'safe' to (usually at home).

My dd is also awful to dd2 at times -roars at her, tells her to shut up, pushes her. It's horrible to witness and even harder to deal with.

The MNers on here seem to have good experiences of support groups. Do you think you might try one?

Hi sibling. Sorry its taken me so long to get back but its been a pure whirl wind of emotions (specifically my dd1's) and I sort of shut down inside myself.

I feel the same as you, C goes to a mainstream school so its hard for other parents to understand and i find it hard to mix with them coz whenever c is invited to birthday parties where there are oportunities to make friends and meet other mums c cannot go as he cannot cope with parties and lots of people and plays up!!

My parents are also in denial, hes just being a typical boy and he'll catch up!!! Those comments dont help.

My husband deals with C really well and just says thats the way he is so just deal with it. But like you i am in all day with C and some nights as husband works shifts so mainly he misses the times when C is really going for it!!! Typical!! He is also very laid back and nothing phases my husband, wish i could be like that.

As i said i dont have anyone to talk to that is why i joined this site yesterday and feel better already just knowing that there are other children out there like C. I also do the crying thing, and sometimes if something has happened at school i feel such an idiot and start crying at school. The school must think im a blubbering wreck!!! But afterwards when C does something funny or sweet all is forgotten until the next time. Arrrrrr what fun, life would be so boring without him.

Hi,
I have posted on your other thread.