What do you do when you really properly feel you can't do it anymore?

[KateLennard]

I know I can't stop. DH, while a good hands on father couldn't fight the battles I fight for DS1 (hfasd, possible add). Both kids lives would be worse without me there. Plus all the meetings, fighting for him etc. I would ruin their lives if I just stopped. But don't know how to carry on.

[Ruby1985]

It's hard I feel ur pain

We have to soldier on and support our kids until they are able to fend for themselves. In the meantime, I go out on girls nights around once a week that really helps me and gives me the break I really need...do you have any family around too who can help? I have two boys one HFA 6 year old and 2 year old.

[blaeberry]

Sometimes I do have to just stop fighting for a little while. Sometimes things then fall apart a bit; this may give me evidence for 'I told you so' or I may kick myself that I have allowed it and not stepped in sooner. But the reality is I sometimes run out of fight and I need to step back and regroup before the next round. I think you just have to accept that this is how it has to be. But most of the time, whether I am fighting or not, I wish I could just stop and not deal with all this.

[Ineedmorepatience]

I stopped by removing Dd3 from school!

We are home edding for 2 yrs, we all needed a break after 2 appeals led to 3 tribunals and she was failed by 3 schools.

We have all benefitted, sometimes I dont get much time out but its so much better because Dd3 isnt stressed all the time, in fact hardly ever.

Be kind to yourself and explore all your options.

Good luck

[OneInEight]

Easier said then done but try and take time for yourself to do stuff that you like doing and gives you relaxation. Someone said to me ages ago (actually I think it was Ineed when our children were in reception and long before I knew my two had AS) that if you are giving 100% and it still isn't enough give 90% and use the other 10% for you.

[Ineedmorepatience]

Wow, that was very deep from me

Shame I didnt take my own advise until last year One

[MaterofDragons]

Kate I too feel your pain and I've had similar thoughts which keep me up at night. My DH is also supportive but can't fight the battles that I fight.
I joined a local support group and meeting up with them for coffee and evenings out is helping somewhat.

Someone said to me ages ago (actually I think it was Ineed when our children were in reception and long before I knew my two had AS) that if you are giving 100% and it still isn't enough give 90% and use the other 10% for you.

This is great advice, thanks Ineed

[Ineedmorepatience]

Yes , support groups, online and face to face. The beauty of online groups is that there is nearly always someone around.

Closed groups on facebook can be good and there are many of them so you should be able to find one that works for you.

[KateLennard]

Thanks ladies. We have no family around to give us breaks, I agree the 90/10 rule is a good one but the stress seems to just overwhelm everything and I work from home so am constantly surrounded by everything I should be doing.
I'm not in a support group at the moment but have two very good friends who are in the same situation as me, so do have people around who 'get it'
I think it's just that I can't see any light in the tunnel at all, things are getting harder and I'm already not coping.

[coffeemachine]

It's hard, isn't it?

Probably doesn't help you but you are not alone. I work all week (school hours is not me time), no family, no help. Support groups are plenty round were I live but all meetings are during the day. I am totally isolated. Online is my own support.

But whilst I go through some very dark times, I find there are weeks (even months) when things are easier. Proper rollercoaster.

The best way for coping for me was to accept that this is my life and that the normality I expected had gone. Once I got my head around it, it got a bit easier. Still shit sometimes.

[Msqueen33]

Big hugs. I'm the same I have to cope but not sure I have much more left. I'm so tired. My dh isn't as supportive as he could be. Life just feels an uphill struggle. I realise I don't really have any friends and my youngest (nearly 4 has asd) I said very hard work. Throw in a 6 year old with asd and adhd and a 7 year old nt kid and I feel my life is a mess.

[KateLennard]

For all those saying you have no support. (Or anyone on the thread) If you want to, pm me where you live and we can see if we are anywhere near each other.

I think the problem for me is that I have accepted that this is the way my life is and I'm not sure I can live it. I continue to fight all the battles but where I used to think that winning them would make our day to day lives easier, now I know they won't. They are important for ds1 on a long term basis, but I can't actually see anything that I can do that will stop life getting harder and harder as time goes on, ds1 gets older and his struggles get harder. I also have ds2, NT, who is starting to really struggle with the impact it's all having on our lives and I can't even manage to protect him from that!

[youarenotkiddingme]

I've learnt I have to stop. Take a breath. Then when I can carry on.

During those times things have been harder for ds. I've felt like shit for it. But like blae said during those times I've made it clear to professionals and school I am not managing. And used it as evidence of how much I personally keep him afloat and how much more support they could give him.

[KateLennard]

Youarenotkiddingme. I have tried that with ds1's school. They suggested I take up yoga as 'he was clearly picking up on my stress!'

[Ineedmorepatience]

How old is your son kate?

I think your life has got potential to improve! Ours has immeasurably, we dont follow an NT path anymore, we have thrown away the traditional parenting handbook and found our own path.

Its different and doesnt look much like other peoples paths but its working! Dd3 is moving forward (in lots of areas)! She is happy for the first time in yrs and I am not on the verge of a breakdown.

Please dont resign yourself that this is it for ever, it really isnt. Your life can change but you have to find the right path for you and your family!

[KateLennard]

Ineed ds1 is 8. He is being bullied at school and it's increasing. Two years ago we never thought we were dealing with ADD as well as the ASD, but his attention is getting worse and worse. He has various health issues, many of them anxiety related, some of which can end up with him hospitalised.
He is very bright but can't spell or punctuate at all which school are apparently 'not worried about'
I am fighting the council for an EHC at the moment!
Getting him to do anything is an exercise in repeating yourself many, many times

[knittingwithnettles]

When I felt I couldn't do it anymore; when ds2 was clearly not coping with school and things didn't seem to be improving, in fact they were getting worse..I took a step back, and tried a different approach.

I took him out of school and started home educating. Up until that point he had coped fine at school, and enjoyed it to some extent (ie proud of things he did there, enjoyed some activities, was part of the community in a positive way, not especially anxious or isolated) At home was a different story, he was quite difficult between ages of 8 and 11, but school seemed a haven for him and us. Btw, we never stressed about his writing or spelling, we accepted he was bad at these things, and it made his school life much less stressed, as we didn't fuss over homework, scribed for him etc.

However, in secondary it was clear the pressure was increasing, both academically and socially and so we had someone unhappy at school and at home. And nightmares with academic work.

At this point I stopped worrying about what other people thought, or what he SHOULD be doing compared to other people's children, and just deregistered him at the end of Year 7 (we tried Year 7 on Dh's insistence)

Then followed 2 years of what I can only describe as de-toxing. A lot of ds2's problems were much more apparent to us, when we were with him all day, but a lot of his problems slowly solved themselves because we had time and space to rebuild his confidence and approach his academic problems in a more leisured way. He now has friends and is like a different person, confident, polite, funny, independent. He is back a new school, with an EHCP for autism and dyslexia (and he definitely has a form of inattentive ADHD but school have said he shows no signs of it, now that he is confident and relaxed, he is one of better behaved pupils in classroom)

Sometimes when you stop trying so hard, and look at things in a different way, they can improve massively. Whereas if you keep flogging a dead horse (sorry bad analogy) it just doesn't deliver. In this case, trying in vain to fit ds to school and get him to fit the demands of an academic curriculum/social life/institution when he wasn't developmentally ready was setting us up for frustration and tension and anger.

I look back now on the tears I used to shed trying to do ds's homework with him in Year 7 (and ds2) and just wonder WHY WHY did I think I needed to live like that? Who was it for? For ds???really did he need a mother to feel so stressed all the time? Did he need to live like that?? No it was for school and institutional rules that someone in some bureaucracy ordained that we needed to do those things and live in that way.

Anyway, rant over, I have three kids in school, and my life is immeasurably better for taking a massive step back. People would say, oh how can you cope with him at home all day. Yes it was hard, but much harder was having an anxious despairing child and a stressed out mother.

[knittingwithnettles]

We also had no family to give us breaks, and it compounded my frustration on my levels when ds2 was growing up. I felt so angry with the so-called community of school mums around me, who didn't invite ds round to play (but invited me to coffee and my other children on playdates) I think a sense of isolation and resentment builds up pretty quickly, half the time you are resentful and the other time you are apologising for your child's habits/behaviour/shortcomings.

Of course it shouldn't be like that, and the more you can develop a thick skin and start thinking about what you need and what your child needs rather than what everyone else needs the easier it is to relax and be happy. Yes, my child cannot do this, but he CAN do this and this and this...and I'm proud of him, and my family unit.

[knittingwithnettles]

Just a hint on the processing/auditory side of things. Ds2, like your son, seems to take nothing in. However, we found that if we simplified our instructions and did them over and over again, the same way, he did learn to take iniative. At one stage even getting him to put his shoes on, or find his coat as like persuading a flamingo to make a snowman...he just appeared completely baffled by these instructions, and in his world. Now he gets ready for football match (he goes independently to stadium on a bus, by himself, with a travelcard, dressed warmly in clothes he has found himself in the cupboard and drawers, not laid out by us in anyway, and makes his way home by himself, without any adult) And this took years of modelling, and some very direct step by step practising to do independently, it wasn't something that happened by magic. But aged 14 he does manage it. The child that couldn't even put his shoes on without help aged 8, and went up to his bedroom to get something and never came down because he forgot why he went there...

So finding something positive they like doing, then breaking down the steps by which they do it, in preparation, and teaching them explicitly is a very good approach. An NHS OT also gave us some very good advice (belatedly) about the way to prepare for goals, in this way, to teach independence and confidence - but build up SLOWLY.

[knittingwithnettles]

8 was the worse age for us. Ds2 seemed really impossible and unreachable on many levels, so stressed by everyday life at home, violent outbursts, fixations, oversensitive. Everyone affected by his behaviour especially siblings. Ruining family outings by his reactions.

It is a 1000 times better now he is 14. He is a teenager with autism, most people would say that is a recipe for nightmare but he is soo much easier.

There is hope.

[Msqueen33]

Knitting what a great post. I often find myself comparing both my asd children with their peers and what they should be doing. The school are also doing this with my asd DC who attends school. I think in a sense you want to manage their problems away. You're right tho and I need to take a step back. My youngest has serious problems that seem very difficult now. She's due to start school in September. School are determined to get my six year old up to expected levels and sometimes I wish they'd not push so hard.

[MaterofDragons]

Great post thanks knitting and it sounds similar to things we are doing with the DTs. At times the future does seem so bleak for the DC that it's hard not to despair. It's helpful to read that things can get better for them.

[Ineedmorepatience]

One of the first pieces of advice I got from this board was to try a visual timeline for Dd3. Because she appeared to be coping no one had ever thought to suggest it to us. I terms of getting her ready to leave the house it was a most valuable peice of advice. By having all the routine steps she needed to complete set out in order in front of her she was able to complete tasks without a need for my constant "nagging" in fact she could get ready for school without me speaking a single word. It was what she needed at that time she was so stressed thinking about the day ahead of her that processing my verbal instructions was beyond her.

Actually being at school was a different matter for her she simply didnt fit, she was lively, bright, funny and full of energy. But school ground her down into a depressed 12 yr old who wrote an email to childline threatening suicide!

18 months after taking her out of school she is literally like a different child.

If you dont get your Ds an EHCP you must appeal. We went to tribunal several times and it was really hard but we are now in a position where we are working with our LA to try to find the best placement/placements for Dd3 for yr 10+. She is ready to try again and with the right package of support we hope we can give her the best possible chance for her future.

Our children have such complex needs that mainstream schools seem to rarely be able to do the right thing for them.

As knitting said 8 is a really hard age.

You need to find your light at the end of your tunnel! You will and when you do it will be a revelation!