HWA

Monday has started as I am sure it will go on with Jermaine being impossible. Each time we have had to change his nappy he has been really violent and difficult. We eventually managed but it takes a toll each time. The nappies are getting played around with too so they are not catching everything and again we have a wet sofa. That will have to be dumped when Jermaine eventually moves out.

We are hoping the carers turn up on time today and don’t take too long to work out what they are doing; we really could do with a break.

You may not know how much Jermaine has changed in the past few years so below are some pictures of him. One is taken today and the other nearly 6 years ago when he was 12 going on 13.

To us, we don’t have Jermaine anymore, what we have is this violent, unpleasant body to work with daily, he gains nothing and neither do we from the experience.

Monday has started as I am sure it will go on with Jermaine being impossible. Each time we have had to change his nappy he has been really violent and difficult. We eventually managed but it takes a toll each time. The nappies are getting played around with too so they are not catching everything and again we have a wet sofa. That will have to be dumped when Jermaine eventually moves out.

We are hoping the carers turn up on time today and don’t take too long to work out what they are doing; we really could do with a break.

You may not know how much Jermaine has changed in the past few years so below are some pictures of him. One is taken today and the other nearly 6 years ago when he was 12 going on 13.

To us, we don’t have Jermaine anymore, what we have is this violent, unpleasant body to work with daily, he gains nothing and neither do we from the experience.

I had a lay in this morning which was wonderful; my Daisy (12) woke me up as she really just wanted a little attention.

When I got downstairs, Matt and Johnny were playing on the Xbox, having fun and Jermaine was sitting on the sofa. On closer inspection that was not quite right … in fact, most of the sofa wasn’t there, it was laying on its side on the floor because Jermaine had wet it (again). He had wet his bed too; he had shit on his bed whilst we are at it. The shit had got on Matt’s trousers and his socks and generally he had pissed every place he had been so the bedroom, the hallway and the lounge carpets call got sprayed. Now, he was sitting on what was left of the sofa, the only remaining cushion and he had half removed his nappy so he could potentially wee anywhere he wanted again.

Matt tried to change him but Jermaine was just thumping him so I took over. I talked very calmly to him for half an hour and took him into the kitchen and closed the doors working on the basis that at least it was easy to clean in there and others could still get around the house. He started lashing out at me. Eventually I had to call Matt back in and forty minutes after starting to get this nappy on, it was done but not without both Matt and myself getting totally shattered and upset by it all. With all Jermaine’s lashing out he had obviously hit himself somewhere as he was bleeding just a little from his mouth. This is one of the nightmare situations for us as we seem to have to justify every little scrape and knock he has in case we are abusing him, sod that we are regularly abused ‘by’ him, that is just ignored!

He went up to bed and rested and I had Robin here which helped me calm down quite a bit, I sent the kids off down to McDonalds and told them to get whatever made them happy, Matt clearly needed to respite.

We have just finished with dinner and Jermaine refused to eat anything, this after he has had insulin which assumes he will eat something so now we have to monitor him to make sure his sugar levels don’t fall, it’s just so much effort and we gain nothing from it, Jermaine shows no affection at all, seems to get nothing out of the experience of living at home.

Sometimes I am asked how I cope. Well, it isn’t just me, Matt takes a lot of it too and he is just 17 and trying to go through college, he effectively has had very little childhood and it’s all just a little too late now. He gets virtually no support except from me and it’s tough for me at times to remember what his needs are. When I do I feel ever so guilty.

It’s OK for me, I get nice messages, often from people I barely know or don’t know at all and that’s just amazing, it really helps more than those people may know but the kids, Matt, well, he deserves better. Daisy does get some support and I have taken her right out of the loop with regard to Jermaine’s care since he has got so much worse. It was OK when he was responsive but not any more.

Should anyone reading this fancy writing to someone, putting our names forward, particularly the kids for one of these once in a lifetime gifts that some charities offer or a garden make over, a house refit, you know the stuff, well, we wouldn’t object. It’s a bit much that we need to ask that sort of thing but, well, it’s been 18 years so I guess if anyone were going to think of it themselves they would have done so already.

I had a lay in this morning which was wonderful; my Daisy (12) woke me up as she really just wanted a little attention.

When I got downstairs, Matt and Johnny were playing on the Xbox, having fun and Jermaine was sitting on the sofa. On closer inspection that was not quite right … in fact, most of the sofa wasn’t there, it was laying on its side on the floor because Jermaine had wet it (again). He had wet his bed too; he had shit on his bed whilst we are at it. The shit had got on Matt’s trousers and his socks and generally he had pissed every place he had been so the bedroom, the hallway and the lounge carpets call got sprayed. Now, he was sitting on what was left of the sofa, the only remaining cushion and he had half removed his nappy so he could potentially wee anywhere he wanted again.

Matt tried to change him but Jermaine was just thumping him so I took over. I talked very calmly to him for half an hour and took him into the kitchen and closed the doors working on the basis that at least it was easy to clean in there and others could still get around the house. He started lashing out at me. Eventually I had to call Matt back in and forty minutes after starting to get this nappy on, it was done but not without both Matt and myself getting totally shattered and upset by it all. With all Jermaine’s lashing out he had obviously hit himself somewhere as he was bleeding just a little from his mouth. This is one of the nightmare situations for us as we seem to have to justify every little scrape and knock he has in case we are abusing him, sod that we are regularly abused ‘by’ him, that is just ignored!

He went up to bed and rested and I had Robin here which helped me calm down quite a bit, I sent the kids off down to McDonalds and told them to get whatever made them happy, Matt clearly needed to respite.

We have just finished with dinner and Jermaine refused to eat anything, this after he has had insulin which assumes he will eat something so now we have to monitor him to make sure his sugar levels don’t fall, it’s just so much effort and we gain nothing from it, Jermaine shows no affection at all, seems to get nothing out of the experience of living at home.

Sometimes I am asked how I cope. Well, it isn’t just me, Matt takes a lot of it too and he is just 17 and trying to go through college, he effectively has had very little childhood and it’s all just a little too late now. He gets virtually no support except from me and it’s tough for me at times to remember what his needs are. When I do I feel ever so guilty.

It’s OK for me, I get nice messages, often from people I barely know or don’t know at all and that’s just amazing, it really helps more than those people may know but the kids, Matt, well, he deserves better. Daisy does get some support and I have taken her right out of the loop with regard to Jermaine’s care since he has got so much worse. It was OK when he was responsive but not any more.

Should anyone reading this fancy writing to someone, putting our names forward, particularly the kids for one of these once in a lifetime gifts that some charities offer or a garden make over, a house refit, you know the stuff, well, we wouldn’t object. It’s a bit much that we need to ask that sort of thing but, well, it’s been 18 years so I guess if anyone were going to think of it themselves they would have done so already.