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 . . .
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 . . .
