How do others cope?

[yippeekiyay2]

Hi all sorry for a sad post but I feel so exhausted and don't know where else to turn. Dd (7) has asd - well I know she has but we are going through the ridiculously slow process of dx with no end in sight yet. This Easter hols has been the worst yet. Started with a malicious report to ss by school which meant us being hauled up to hospital to see sw and Drs just after we had finished school and work - posted separately about this so won't go over it again other than to say it is adding to enormous stress atm. During the last 2 weeks dd has refused, demanded, had tantrums and meltdowns, argued with literally everything, been aggressive - the list goes on. Our holiday was enjoyable in parts but we had all of the above behaviour to contend with. She has just been to a party today in which she basically refused to participate and sulked the entire time which meant we couldn't leave her there even tho all other parents did. We have no family here so we do all the care for her and we never have any 'quality' together as a couple so this puts a strain on our relationship. I am also 20 wks pg and this is probably making me more emotional than normal. I just don't know what to do anymore. I feel like she is getting worse and I worry constantly about what the future holds. Sorry for the long post - everything just taking its toll I guess...

it is tough, isn't it. dc1 has ASD and severe LD. DC is challenging (possible AS). No family and I work all week too. I have burn out, had a break down last year but had to keep going. No family in the UK either. I have just accepted that life is tough and shit and that there is no room for me and that things I need. I stopped all contact with friends (coulnd not stand to see how they had a life when I only have hell most days). I just mind my own business now and try to get through each day. this has helped somehow.

I think sometimes they get "worse" in the holidays because they are still stressed by school and know they are going back - so you neither get the benefit of the routine of school nor the benefit of calm holiday atmosphere. I remember ds2 being particularly challenging at this age, and it was so noticeable that we never got any time off, no playdates in offing, never able to leave him at other people's houses, or parties, compared to his peers. I wouldn't see it as "sulking" btw when she doesn't engage at parties, more just finding it very difficult to manage the party atmosphere, whilst possibly longing to join in She probably knows that everyone else stayed without parents, so there is the stress of feeling different into the bargain.

My take on it all is that it does get worse for a while, but if you get a diagnosis, and school puts in the interventions they should, AND you do lots of reading up on how to prevent meltdowns, manage her environment AND put pressure on school to give her proper help, you might find things get a bit better. Not perfect but better. Ds2 adores little children btw and behaves so much better with them than his peers, so that might be another thing to look forward to, her relationship with the new baby, possibly??? Have you looked at some of the resources suggested by other mums on SN chat and SN children to help with behaviour...just trawl through to find the links - I'm afraid I cannot do links.

I have three kids and even though they are teens I am still waiting for the quality time with dh I'm afraid. He works from home which does help.

But I so agree that having a child with a disability puts a strain on your relationship. The upside is that there is someone out there who loves your dd as much as you, and that is a strength , if you can turn the problem on its head. We used to argue a lot over the best way to deal with ds2, and no doubt that didn't improve ds2's behaviour, but we have got to a much better understanding and appreciation of him together. Dh just took ds2 to Paris today (he is obsessed by the Eurostar); he said both ds2 and his sister (who is NT) were very uninterested in the history of Paris, and raced around, he found it frustrating that they were both so impatient but at the same time he saw that they were in fact having a great time, on their terms. We just had a chat about it on the phone, he was feeling a bit gloomy in a way, but still glad he had taken them ifsyim.

You dont cope, you just muddle through best as you can xxxx

Thx everyone just been sat in tears most of the day as the last two weeks stresses have built up on me.
Nettles - I agree sulking was not the right word, more a feeling of the action rather than the meaning iyswim.
I am dreading going back to work currently, I work with young people with asd - ironic as i didn't know about dd before the job! - and I feel so fragile at the mo i don't know if I will be able to deal with it. I feel sick to my stomach and teary all the time. Also with the issues with school I don't feel up to the fight with them as we have to make a conplaint re ss and I feel so angry with them don't know how I will keep it together. I have a midwife appt on Monday and don't know whether to mention how I'm feeling but I'm scared to now that ss have been involved.
I will have a look through about supporting behaviour later for more ideas, we have tried many in the past but new ones always help.
Also dd is very good with little ones so I am hoping that will still work with a sibling.
Thx for all the support - I feel so low at the moment it does help

I'm so sorry about the school's actions; if it helps I had a similar incident with CAHMS where they accused me in writing, of being depressed and disorganised and not setting behavioural boundaries for the children (the person who said all this had not actually met any of my children, nor ds2 with ASD even...that was another clinician) because I said I felt "overwhelmed" and that dd (who is NT) was lashing out because of her twin's difficulties. I was so upset, and so angry, and yes, like you scared. I volunteered with the school at that time, and felt so anxious they might read this report and judge me. I did complain. It still makes my blood boil to this day, that someone could ask for help (they were discharging ds2 from CAMHS at the time, first they diagnosed then they discharged!) and be slapped down like that.

Anyway, I don't know is for the best; I've learnt the hard way that sometimes only you can help your family members, help from CAHMS or schools can be patronising at best, and destructive at worst. Luckily we had a school that believed in me and the children, (because they had actually known us for several years). But I still read that particular discharge letter and my blood boils.

DH and I did not really get quality time regularly until DDs were 19! (And DD1 was in specialist residential schools from 10 - but that left us with DD2, who is still a full time job)

I always thought of it as DD1 comes from another planet, with a different culture from us. It was much easier to fit our lives into her culture, rather than endure the repercussions of trying to make her fit into ours. Once you accept you might live on Earth, but there it's a different world from parents of nt children, and you mix with parents of other disabled children, life is easier. It's about adjusting expectations. ( I am still exhausted after college holidays though, with both DDs at home, at each other's throats, so there are no easy answers really)

Nettles it doesn't surprise me - there seems to be so much judgement of parents of SN children. This is why I have decided to keep my feelings to myself about being low for now and see how I am once back at work. I will definitely be letting school know how I feel about their actions however, dh is going to contact the school on Monday and ask for a meeting with the chair of governors as it was the head who took the action and see what happens from there. I am also going to look at some other schools as trusting the school now or sharing details from home will be v. Difficult, as well as initiating an ehcp request so will be a busy time!
Biscuit - I know what you mean about it being a different world, unfortunately i don't know really any other parents in same situation currently as there aren't many groups here (small town) so something else to investigate further I guess...