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Don't think I can do this any more. Does anyone have any other option ideas?(22 Posts)
Home edding two boys with PDA, ds1 (16) and ds2 (11). Two other probably NT children who are both in school.
I can see that this is the right decision for them, they didn't cope with school, but I'm doing a really crap job of it.
Ds1 had a work experience placement which has broken down, we are trying to find other things, but in the meantime he's anxious which makes him very obnoxious and nasty, and you can't get through to him at all, he's controlling and rude to everyone but dh (who is his "safe" person). I understand why he's like this, but after two weeks of being told how fucking useless I am, how I'm whinging at him, how I'm abusive to him and hate him (because I've asked him to pick up his socks, or turn the TV down or something), I'm worn down.
I'm also autistic, I'm struggling with lack of time alone to decompress and have been very anxious and on the cusp of meltdown for the last couple of weeks, so I've been a crap parent which hasn't helped, but I literally can't do this any more, and the thought of doing this for the rest of my life is unbearable.
I'm a SAHM, no career options yet, dh works full time.
90% of the time I can manage, put a positive spin on it, see that we're doing the right thing. At the moment I hate the constant noise and swearing from the boys, and spitting from ds2, and nothing I say or do makes a difference.
I know I need to get a grip and just do better, but at the moment I can't stop crying and wishing I could leave.
Any bright ideas how to help me make things better?
Firstly, you won't be doing it for the rest of your life, things will change.
Secondly, it's just been/the end of the Easter holidays, hopefully things will settle a bit now 2 dc's should be back at school/nearly back at school.
Thirdly, can you find a way to outsource/delegate? (easier said than done I'm sure).
Fourth, could dh change his working pattern? e.g. compressed hours in 4 days instead of 5?
2. Yes I'm sure they will, ds1 will calm down eventually and things will settle back to normal.
3. Tricky as there's such a lot going on family-wise and I don't like to add to it.
4. Unfortunately he can't, it's an on-call type of job and he's the only engineer.
I know it'll pass, and things will get back to normal at some point.
Do you have to be brilliant all the time? Could you allow yourselves just to be a bit crap for a bit. Its an amazingly freeing feeling.
What do you like doing? What do the kids like doing? Do you have a HE routine/tutors/classes/online stuff or are you free flowing?
HEing part of a family has very specific problems for the family dynamic. It can be a bit difficult till you are all settled into it.
Work experience can be particularly stressful and frankly boring. What about a real job?
It's a rare day when I hit brilliant
Most of the time I'm mediocre, the last couple of weeks I've been crap, but the boys aren't very forgiving of crap.
We're mostly free flowing, following the boys' interests, which means lots of scootering and engine based things. Ds1 refuses to do anything academic, so the work experience was working on a farm, which he loved, we're in the process of finding something else, or a few things so he can gather up some skills on the way.
The main problem is that I'm very low energy, and need lots of time alone, ds2 is very high energy, both need to be in control, so the dynamics are tricky. I think the Easter holidays has knocked things out, because ds1 is socially anxious and won't go to places, ds2 needs to be busy, and all our needs mostly clash, which is something I'm not very good at managing.
You sound like you've hit a wall. I would be looking for Saturday jobs or equivalent for your big boy and possibly a new project for both.
I have a scooter boy too. What about building a track? Woodwork, digging, landscaping, research/physics....
I'm guessing you need them to be busy, physically exhausted and out of your hair for parts of the day.
With mine sometimes we just need something different. Weekend away? Weird and wonderful course? (Dry stone wall? Cob? Surfing? Flying?)
The truth is there is a natural up and down to parenting (as for most things). You have to remind yourself of the good bits and what has been achieved and accept that sometimes they must wait while you have a break (with telly or whatever) and you must endure the tantrums and tedium of their unregulated emotions.
Are you getting any respite at the weekends at least? If its 24/7 that's very hard.
Hitting brilliant at all is amazing!!
I'm sadly also familiar with the obnoxious when anxious young person ( and the impact on the primary carers)- but I only have one DS (who can be very nasty -especially to me-when upset)- and decided against home educating him because I knew I would not survive it. So I take my hat off to you educating both DSs. Actually I have barely survived sending Ds to school! We too have a mismatch in energy styles, (Ds is super fast and never stops) and I have a health problem that slows me down further - and DS cannot think of others peoples needs at all- and gets very angry at slow responses ( microseconds!)! Small things can make a difference. Ds has learnt some of the phrases I need to hear to feel less abused - like I'm sorry, please or thank you! Its often the tone of the phrase that makes the difference ( as they will to others)-small things but they make a big difference to me.
I was wondering if there was a supported unit within the local 6th form college that might suit your DS1. Ds has been calmer - and mostly quite lovely- since going to our local college - but he has quite severe LD as well as the ASD(PDAtype), so is not doing academic subjects. Some colleges will take slightly younger than year 12 young people. Colleges do not seem as rigid as schools, and part time might be possible.
I wondered too about direct payments - if you could first of all get DPs,(from social services disabled children's department) and then use them for some support. It is tricky to find the right person. Would your DSs be better with a male to take one or other out and learn in the field-or would one of them prefer being taken to a library? If their needs are different it might be an argument to get DPs.
I have days when things don't go well (OK disasterously wrong!)and I feel traumatised and a complete failure - but on better days - I can see that actually we are not doing too badly - its the disability that is the extra challenge.
We had some input from specialist CAHMS/ challenging behaviour unit and now Ds is on medication to reduce his anxiety - not a decision taken lightly - but he is a much happier less stressed( and less aggressive) young person- and more himself if that makes sense. He is more able to interact with others.I mention this in case you feel a psychology input could help either boy.
Finally - your health is important- and actually should be given top priority. ( I know what mums are like!) You must get some time for your needs.
I suppose in answer to your thread title you CAN stop doing this. What you do is phone the LA and ask them to help you find a setting for the boys.
You can organise tutors.
If it's too hard you can stop.
I wondered also if you could get an education (and EHCP) budget for DS1 - I know this is possible for some young adults with LD but I don't know what age it might be available- possibly 18- or if its only for those with complex needs. This could pay for training courses but also things that could fit into the field of life learning. I know an 18 year old with SLD who have a budget to pay to attend gardening one day, cooking or art or sport on other days.
zzz ideas are excellent. Ds is learning about bees at the moment - although I am not sure he will manage the real thing! His local college has a farm so there are lots of things to interest him. Would either like walking- perhaps helping with the map reading?
Thank you, those are very good ideas, all things we can have a go at.
My parents have a big gardening project going on, both boys are going to be involved, which will be good, ds2 loves digging and growing things.
We're lucky enough to have a skate park nearby, which we go to loads during school time, we'll examine the ramps and try to recreate some of them, or come up with some other ideas.
Sorry, the iPad's playing up and I missed lots!
Ds1 doesn't have a diagnosis - he masks and won't engage (apart from being a delightful, happy boy with CAMHS etc), and our area is dreadful for diagnoses unless the child is obviously autistic.
I had a long chat with our GP who has suggested we aim for a diagnosis when he's 18, as adult services are much better here and they're more likely to see it, she said this may be useful as he'd be able to access support through a local SN further education college.
The reason we took them both out (ds1 last year, ds2 this year) was because both mask and look fine, so there was no support. Ds1 was badly bullied, which has left him very socially anxious and unable to cope in group situations, particularly with others his age, so at the moment whilst we would love him to go to college, realistically we won't be able to get him there. We are hoping to find some short agricultural and mechanics courses that he could do with dh. Ds2 was constantly in meltdown at home and eventually refused to go into school at all, and couldn't relax because he knew he was expected to go in at some point, the EWO was horrible. Even though I'm in the depths of crapness right now, things are still so much better than they were, so I think this blip is more about me than the boys!
How would we go about getting an EHCP when he's not at school? That could be very helpful for both boys.
You just apply for the ehcp. Here it's an email to LA. Ds1 got his before dx (though in the process). We were refused and just asked again.
I'd also say apply for EHCP. You have evidence that they don't understand need and so need wasn't met and so they aren't in school now.
Using send CoP and IPSea it's quite a straightforward process to follow despite being long and tedious! If you know what should be happening you can keep la in check!
I also agree if you need time out take it! Think about where you ate now and where you could be if you don't take that time out now?
Nb I posted a video yesterday about the EHCP process which is worth 5 mins of your time. I find it helps to have an overview.
Is it IPSEA that I can arrange a phone appointment with? I'll have a look into that, and I'll have a look for the video you posted zzzzz, thanks.
Your education otherwise/inspector person should be helpful.
Parent partnership from the LA or whatever they are called in your area.
The assessment team at the LA.
It's a tedious admin job not enlightening or anything but worth doing.
It's moved to prevention services where we are, I'll give the lady a ring and talk to her about it. She seemed nice when I saw her last, and she seemed to understand the reasons we took both out of school!
And thank you all for the very helpful replies, I was in a bit of a state yesterday, feeling much better today and have more ideas to get on with.
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