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Our First Ever Respite - Carers UK Forum

Our First Ever Respite

Share information, support and advice on all aspects of caring.
A week ago today our son was sent home from school. He'd arrived feeling fine, but about quarter of an hour after arriving he went ballistic and trashed a classroom. No-one knows why and since he's almost completely non-verbal, he can't tell us himself.

Normally being sent home upsets him and he settles down, but this time he didn't. I had to come rushing home from work at lunchtime to take care of our younger son while GWP wrestled with him. He went on screaming and howling and throwing himself about and smashing or throwing anything within reach. He's bigger than me now and strong as an ox, and I don't mind telling you I was a bit scared at times. We called an emergency doctor, who prescribed tranquillisers. They did nothing.

Neither of us got much sleep that night, and he hadn't settled by the next morning. We called the doctor out and he increased the dose of tranquillisers. They still did nothing. We were advised later that decreasing the dose might have had better effects, but ah well, better luck next time ! As he became increasingly violent and distressed, our social worker felt that he presented a danger to himself and us and began trying to find specialist respite for him.

We struggled through another challenging night, with his distress and violence ever increasing. Social worker returned next day, still trying to find respite, with two trained volunteers from a caring charity who made matters much worse by trying to pen him into a corner and sing to him. He eventually managed to break away from them, breaking two radios and a TV and pulling a radiator off the wall in the process, and ran to his bedroom. They then penned him in there, and when he wet himself and became distressed, one of them announced that he obviously had a urine infection and that was what was bothering him. The social worker paused in phoning around stubbornly resistant respite centres to send them away and call in another social worker and our own GP, later adding a policeman for good measure, since our son had reached the stage of trying to throw himself through an upstairs window. After four and a half hours of continuous phoning, our social worker - who I can't thank enough - finally found the right strings to pull and our son was taken away, in handcuffs, in a police car, for his first ever respite, care of the Aberlour Trust.

It wasn't the way I would have chosen, but oh, the relief. The peace in the house. The calm and the freedom. For the first time in more than thirteen years of struggle there was a little time to mourn for all that we had been through and the fact that family life was not what we would have hoped for - we spent the weekend in floods of tears, despite the cheery phone reports from the respite centre telling us that after the first night he had settled in and seemed quite happy, particularly with their trampoline! Of course I missed him, but to set against that there was the possibility of putting things down knowing I wouldn't return 10 minutes later to find them smashed; I could go to sleep at night knowing I wouldn't wake to find he'd blocked the drain and flooded out the downstairs; I could settle down to make jigsaws on the floor with our toddler knowing he wouldn't come breenging through (there's a good Scots word for you), upsetting the little one and tearing up the pieces. Husband and I even managed 10 minutes alone in the bedroom, for the first time in . . . well, who's counting ? And I knew he was content and in safe, experienced, competent, caring hands.

But he came back yesterday. He was glad to be home, I could see - smiling, and wanting to hug his dad and me. He was on his best behaviour for the evening. Even so, we still went to bed with milk spread over the kitchen, a cup broken, a box torn up and a whole lot of noise.
His dad was thrilled to have him home, but the emotional pitch of the house went up several gears as soon as he came in the door - everyone was much tenser, waiting for the inevitable explosion. And his school didn't want him in this morning, so the toddler has to miss out on his toddler group and storytime at the library, because clearly husband can't take the big boy in amongst all those little kids.

Now I feel like the bad guy, because I'm starting to hint that in the long term a residential placement might be best for all of us. I do love him, and when he's calm, no-one could be sweeter - at one point the respite centre even called us to say that he had rushed to help another child clear up when they spilled something, and had then gone off to help the staff with the hoovering. I'm proud of the fine boy he really is, in spite of the mess autism has made of him more than half the time, but now I've had a brief break from him I've become much less satisfied. I've seen a glimpse of family life with a 'normal' child and no distractions, and how beautiful it was. Should I press for residential, if it will make my husband unhappy ? Or am I sacrificing the younger child to pacify the elder and his dad ? Am I selfish, even to think about it ? Whatever else, there's no doubt in my mind that respite has many advantages, but it also opens several new cans of worms when it ends . . . Image
Nobody can ever tell you what is right for your family. I feel so guilty, as my younger son, now 20, has been suffering from Clinical depression for the last three years, as well as having diabetes since he was a baby. He has lived in his older borthers shadow always. My elder son is 22 and has Downs Syndrome. He went to mainstream school until he was 12, and my younger son was, and still is asekd if he is Ben's brother, and how he is these days. When my elder son also developed Diabetes, that was the turning point, and my very caring younger son was very jealous of him, and still is. I also have a daughter, my youngest child, who has no health problems, and she and my younger son know how it feels to have a "normal" family life. They went on holiday to an aunt and uncle in the Midlands a few years ago, and were spoilt rotten.

Three years ago, we managed to get our elder son into respite care for a while, and my husband, myself and our two other children went to a hotel for a couple of nights, as our son was hoping at that time to go to university, and we attended the open day, but made a break of it.Just to sit at a dining table and share a joke that wasn't then debated over for the next 24 hours, which is what Ben would have done, was so peaceful.

I hate the idea of my son living away from us, but the peace is unbelievable, when he is not here. Last night for example, he was sitting down watching Andy Murray win his tennis match,and I was totally immersed in the match, but I couldn't stay there, because he kept talking, and bringing me back to him. Life has to revolve around him.

Good luck with the future, whatever you and your family decide. Image
Only you can make the decision on which path to follow. Much as you love your son you must also think of your young one, your husband and yourself and weigh up the life you have had with how life could be if your older boy is placed in care. Whatever decision you come to no-one outside your family has any right to say what you should or shouldn't do.
I hope you will find some peace and happiness whatever you decide.
Gem has hit the nail on the head. The only advice I can add is to think of years to come when you are no longer on this earth. At least if your son is found a full time placement now you have some control over the situation, but should the worst happen where might he end up then? Good residential care is like hens teeth. Good luck to you all in your quest for happiness for you all and a good quality of life.

Take care
Meg
I think one has to think of the needs of the family as a whole. Our eldest grandson(6) has Aspergers. He is extremely bright academically but finds social situations and change of routine almost impossible. His paretns do their very best to cope with his needs, but sometimes I think this is at the expense of his younger brother!
Big son went back to school on Wed. He was fine when he left the house but almost as soon as arriving at school he started chucking chairs about and pulling posters down. They tried to contact GWP, but he'd taken little son for his playgroup taster session, then spent the rest of the day in the garden - you can't hear the phone down there. The school shuffled their feet and basically hoped we'd say he wasn't going back that term. It's only two days and they've tried quite hard with him, so we let them off the hook. Marvellous social worker got us an afternoon and a daytime session of respite, so I only missed one day of work.

There's some kind of big meeting on today (parents not invited) to try to plan where things are going. SW will report back to us this afternoon. The current idea is that an assessment will be carried out over the next 6-8 weeks to decide. SW is favouring a residential school on the outskirts of Aberdeen: it's technically within our council area but isn't run by the council, so if the assessment runs as we expect she'll then have to go cap in hand and grovel and beg for the money. We looked up the school's website and almost died with horror at the size of the fees. Even with a second mortgage, we couldn't cover much more than one term ourselves - and then only if we gave up a few minor luxuries such as eating and electricity ...

I think the school may well be the best thing for him, for all of us. But every time he is good and calm and busy and happy, I feel as though I am betraying him. There are only too many dreadful stories about the things which can happen to children in care, as he would effectively be, and while we would demand regular visits, being virtually completely non-verbal, and quite a good-looking boy (he didn't get that from my side of the family, I can tell you !) I can't help worrying about what might happen to him. But what will happen to us if he doesn't get a place ? We're already at the point of considering selling up and looking for two small flats so we can keep little son safe from big son. Where will it end ?! Image
I think the needs of your younger son must take presidence over those of the older one, otherwise you are likely to have another damaged child.
Good luck with sorting the new school out. Hopefully the council will feel generous and help finance things. My little brother had ADHD really badly and my parents sent him to a specialist school near Romsey. The council refused to help with any of it because he wasnt "Behind" enough with his work even though they assessed him and everything. Instead my dad got another mortgage, several large loans and wiped out his retirement savings and share portfolio. He now has very little left but my brother was able to go to school and now is almost completly "normal" as opposed to the feral hyperactive kid he used to be.