so long, so much, so little
yes, it has been a long time since i posted anything, there has been so much going on and so little time or inclination to explain it.......
Aggie's op was sucessful, but then they found another abscess and he needed another op:( The doctors decided that the infections were due to the anti-TNF drugs he has been taking so obviously took him off them. he was in hospital for almost a month in the end. Once he recovered from the ops they started topical treatment for his psoriasis which did bring it down a bit, but as he is not on any drugs to keep it that way, it all came right back as soon as he was discharged:(
Unfortunately, we can now see how much the drugs were helping mask the arthritis as he has been in a lot of pain and having lots of difficulty doing even the simplest tasks. He saw his new Rheumatology consultant yesterday and was told there was no way he was going back on the drug he was on before - they may look at a different one in another few months, when he has been totally drug free for 6 months...... He has been prescribed a standard arthritis drug for now, but even if it does work, it won't be for several weeks, and won't affect his psoriasis at all:(
Mstr A has been difficult recently too. It is the end of term, so the curriculum is all messed up and he doesn't really like all the things that other kids think is fun! With Aggie in pain and Mstr A developing tourettes-type yelling, the boys have been at loggerheads even more than usual...
Work-wise, things are so-so. They are still "going through" the redundancy process. Apparently they are now going to tell us who will be redundant at the end of this month. I am still assuming I am top of the redundancy list;) If not, I am not sure how we are going to get through the summer holidays. It is harder to find places/things for Mstr A to do now he is older. they expect a higher level of independance which he just doesn't have. Unless I can go with him to whatever I make him do, he can't do anything (although his idea of heaven would be to spend the whole six weeks playing on the computer!).
On the plus side, we have made it back to re-enactment (at least the local events) and I have taken up a new craft: basket weaving, which is something I can actually do, and has an end product! LMB has FINALLY learned to read properly, and can be settled down with a book of her own at night time, and LMD is desperate to start school in September and can be disciplined with the threat that she won't be allowed to start if xxx LOL
We finally heard back from CAMHS, who are sending us off on a parenting course in September:) I am not sure how much use it will be for Mstr A, as these courses tend to talk about how to empathise with your child and how to encourage them to eempathise with you. Uh huh, but he is autistic. empathy is pretty much beyond him, and we will never truely understand how he sees the world! Still, professional advice is never to be sneezed at, and I am sure some of it will be useful for him and for the girls. Hopefully it might reduce some of the male dominance fights that are happening with depressing regularity.
I have taken some time off the CAB - I said I will go back in September. The thought of the holidays is stressful enough without leaving Aggie & the kids alone for an extra day each week.
Aggie's op was sucessful, but then they found another abscess and he needed another op:( The doctors decided that the infections were due to the anti-TNF drugs he has been taking so obviously took him off them. he was in hospital for almost a month in the end. Once he recovered from the ops they started topical treatment for his psoriasis which did bring it down a bit, but as he is not on any drugs to keep it that way, it all came right back as soon as he was discharged:(
Unfortunately, we can now see how much the drugs were helping mask the arthritis as he has been in a lot of pain and having lots of difficulty doing even the simplest tasks. He saw his new Rheumatology consultant yesterday and was told there was no way he was going back on the drug he was on before - they may look at a different one in another few months, when he has been totally drug free for 6 months...... He has been prescribed a standard arthritis drug for now, but even if it does work, it won't be for several weeks, and won't affect his psoriasis at all:(
Mstr A has been difficult recently too. It is the end of term, so the curriculum is all messed up and he doesn't really like all the things that other kids think is fun! With Aggie in pain and Mstr A developing tourettes-type yelling, the boys have been at loggerheads even more than usual...
Work-wise, things are so-so. They are still "going through" the redundancy process. Apparently they are now going to tell us who will be redundant at the end of this month. I am still assuming I am top of the redundancy list;) If not, I am not sure how we are going to get through the summer holidays. It is harder to find places/things for Mstr A to do now he is older. they expect a higher level of independance which he just doesn't have. Unless I can go with him to whatever I make him do, he can't do anything (although his idea of heaven would be to spend the whole six weeks playing on the computer!).
On the plus side, we have made it back to re-enactment (at least the local events) and I have taken up a new craft: basket weaving, which is something I can actually do, and has an end product! LMB has FINALLY learned to read properly, and can be settled down with a book of her own at night time, and LMD is desperate to start school in September and can be disciplined with the threat that she won't be allowed to start if xxx LOL
We finally heard back from CAMHS, who are sending us off on a parenting course in September:) I am not sure how much use it will be for Mstr A, as these courses tend to talk about how to empathise with your child and how to encourage them to eempathise with you. Uh huh, but he is autistic. empathy is pretty much beyond him, and we will never truely understand how he sees the world! Still, professional advice is never to be sneezed at, and I am sure some of it will be useful for him and for the girls. Hopefully it might reduce some of the male dominance fights that are happening with depressing regularity.
I have taken some time off the CAB - I said I will go back in September. The thought of the holidays is stressful enough without leaving Aggie & the kids alone for an extra day each week.
posted by Juggling Mother @ 3:51 pm
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