Feel like a massive failure

[cansu]

Ds severely autistic, dd moderate to severe. Ds has become incredibly destructive and obsessive. He has wrecked sofas, DVD players and today I came home to find he had ripped open the brand new bean bag sofa we have just bought him. Imagine millions of tiny polystyrene beads everywhere, several inches thick. I have just spent three hours cleaning it up. There seems to be something new everyday. Dp totally lost it and I had to send him upstairs as he was shouting and ds was going beserk, hitting himself and lashing out at me while I tried to calm him down. I just don't think I can do it anymore. I keep thinking have we hit the end of the road, is weekly boarding the only option. But then that seems like a massive failure and I feel heartbroken at the thought. Nothing seems like the right thing to do. What do I do?

I have no wise words except, get them to bed, get a big drink (wine) for you and some chocolate (Lindt) then think about it fresh in the morning. Or that's what I would do anyway.

Sounds horrendous. Is it a blip or relentless?

When ds went to Indi SS we were considering another placement but due to distance he would have to board. I was against it but over the couple of years that he attended his SS I wondered if it would actually be better for us all.

My reasons were this:

Getting up and ready for 7:30 taxi meant I never saw ds really in the mornings.
His getting home at 4:30 when I was trying to deal with other kids and homework and make dinner until bedtime was not quality time. I was also tired at that point and just wishing the kids in bed so that I could attempt some of the increasing housework, putting myself to bed shortly after.
His getting home at 4:30 meant that not only could he not attend afterschool clubs, but neither could any of his siblings.
If he attended boarding school, at 3:30 he would go straight to a club, probably music which he was talented in but I never had the time to supervise his practice.
He would be spared long taxi journeys and be less tired from them.
His siblings could have a normal-ish life during the week and attend activities.
The time ds spent with me and his family would be good time, and quality time rather than stressful argument time, and special school boarding holidays are longer than state schools so I'd get some decent 1:1 time with ds too.

I decided in the end to HE but the other idea is still a possibility one day.

None of the reasons would be because I was a failure, but just a decision that makes the best use of family time for all of us.

It has been pretty relentless for last six months or so. We are trying various medications but feel like we are on a kind of treadmill of misery really. Dp depressed off and on all the time. Dp also autistic so copes v badly with problems. In the past dp despite all his own issues has always had v close relationship with ds. Now feels like he can no longer cope so more and more of it falls to me. Tonight for instance I had hoped that once he had calmed down he would come back down to help, but no. I have had to cope with all the mess, dd who needed feeding and bathing, ds who needed calming and bathing and putting both to bed. Am just totally drained. Plus work full time so have work to cope with tomorrow. Have had glass of wine. Feel so pathetic and tearful. Thank you for replying both of you. I feel more and more like I live in a totally different world to everyone else. I couldn't begin to tell family and friends how awful it is as I think they would be shocked tbh.

Sounds like you need a rest and a plan. Probably a rest TO plan. Is there any way you can arrange that?

Not sure tbh. It is probably what I need. Will think about taking a day off to try and get my head straight. They are both in bed now, thank god.

It sounds really tough. Do you have access to respite care. I know you are their mother but you are also their carer too.

Working full time with 2 DC is hard work with neuro typical children, you have a massive load on your plate. I think you're doing incredibly well under the circumstances if you only feel tearful & guilty.

It might be worth thinking about telling your family the full truth of your situation so you have someone to talk to (or even some help...)

Anyway, I understand your world. I mentally high five myself for only being half an hour late for school when what happens in our house is chaos to the extreme.

Give us an update in a few days, I always like to hear when people feel better :)

Sorry you are having a rough time. My dd also has severe autism and we have been through bad times. Working alongside all this is v v hard, I now work reduced hours and thats helping - although it comes with reduced pay whihc doesnt help. Respite helps get things on an evenish keel. We just need regular breaks to re-group.

Thinking about residential schools/care is heart-breaking ( its something that we may need to do one day) Im hoping to exhauste every other avenue before we get there. I thought we were at that point earlier this year, now things are so much better than I could ahve hoped. What changed: we are getting respite - what we get and when still needs tinkering. We use childcare on the weekends. DD's sleep is vastly improved with melatonin. I work a little less.
Im not sure where you are in terms of respite etc But I hope you can find a way of clearing some time to get some headspace and work out a reasnable plan for you and your family.

DD1 went to a residential specialist speech and language school at 10, because even the language unit staff admitted her problems were so profound that nobody in the County knew how to teach her - and there were no secondary language units, so there was nowhere for her to go at 11. She loved the school after going there on assessment - because she recognised she was with people who understood her and it was an environment where she could cope. (She felt a failure in mainstream)

As Starlight says, and my mother said - DD1 got a proper childhood. After school, she had a snack after school, an activity like basketball, did her homework, had dinner, then another activity like football, and an hour's relaxation before bed. She was able to socialise with the other 80 plus children in the school. She came home every weekend, out of choice. She was very happy.

Monday - Friday, I was able to spend more time with DS and DD2, who had suffered the most from lack of attention. We all got respite; there was no more fighting and stress with the LA, because once the out of county decision had been made, that was it. No problems with mainstream schools, who don't understand or are constantly using dc's provision for something else.

We are at the stage now, due to her developing other problems, that we cannot cope with her for more than a few weeks. The fact she is at a residential college means she comes home, when we have had respite, have recouped our energy and can spend quality time with her. She has a really good time at home, instead of us all sleepwalking around, in a frazzled state the whole time. The chief ed psy there says to us - "She is safe here and at least she still has a home to come to!"

Sometimes, its a case of firm loving - considering the needs of the whole family and especially the siblings; and not feeling guilty because you cannot meet the needs of the SEN child. Its only the other end of the spectrum, of families who have to put an elderly parent in a residential home, because they simply cannot cope with working full time, looking after the children and the frail parent with disabilities. We are not superhuman; and its better to choose a residential school, than the family breaking down - which happens.

Thank you all for all the wise words as usual. I have made an appointment to discuss regular respite or weekly boarding at my ds school. I am dreading having to speak to social care though. We don't have any respite at the moment and have no family to help us. It is all too much. Feel a bit better today perhaps because I have made a decision that this can't go on. Something has to give or I think the family will just break up or I will crack up I suppose.

You have to get some help, you have done the right thing.

I think it is common as parents to feel that we have to shoulder all that is thrown at us as a consequence of having our children but the fact is that they are full and equal members of our society and our society has a responsibility to them as well as you.

You would not consider it acceptable to shoulder the burden of an illness without antibiotics and painkillers (not suggesting for a second that our children are illnesses, but they can and do bring discomfort to us at times), nor would you consider it acceptable to deny yourself or children access to education. You and your family are ENTITLED to support. Like education and NHS provision it can be patchy both to access and to get quality but there is no shame in using it.