Blog writing has taken a bit of a back seat lately. To be honest it is just really hard to find the time. But I do find it very therapeutic and I like to hope that my family will look back on it in years to come with many fond memories.
It’s been hectic. I guess it always is. Emergency trips to A&E with Rosie, appointments for various people, visits from autism therapists, losing sleep due to kids with coughs and runny noses, getting assignments done and so on. Rosie is ok now (apart from the cough and cold) and her bowels seem to be returning to a functioning state now that she is on medication.
I am still studying my nutrition course. 10 modules done and 4 to go, so I’m getting through it. I was pleased to get an A for my essay on menopause, osteoporosis and diabetes. A monster essay which was really 3 essays in one. My next assignment is about weight loss, and I’ve lost half a stone in preparation for it! A little research never did any harm after all :)
It has been a tough week. I’ve done a lot of crying and felt a lot of sadness, not for myself but for my friends. The kids have been very understanding and Barney has been a real star. I keep reminding him that I am just a little sad at the moment, and he comforts me by telling me ‘its ok Mummy, the baby doesn’t have to suffer, she got to go straight to heaven’. The big kids have given me lots of hugs and if I am a bit grouchy with them they know why and don’t push it.
Rosie is suddenly learning to talk. She repeats everything now. Today I took her photo and Tarja said ‘say cheese’, to which Rosie replied ‘cheeeeeeese’ and we all laughed. Her favourite words at the moment are disgusting, gross, oh dear and oooh noooooo.
The NHS autism therapist has been coming out to see Barney for the last few months now. Being in the home she has gotten to see quite a bit of his natural behaviour. He has not wanted to do any of the work she’s set, will not talk to her about any of his issues and spends the entire 3 hour sessions either showing off, sulking or storming off and crying. I always feel that no one gets to really see the difficult issues we have with Barney’s behaviour apart from me and Marty. People sometimes get a glimpse into it, but it has become obvious to me from various comments people have made that they really don’t get how awful this situation can sometimes be. So today when the autism lady, F, sat me down to talk about Barney I was a bit taken aback.
To cut a long story short she said to me that Barney was posing a real conundrum to her. She doesn’t know what to do about him. Even with all her years of helping autistic children she is at a bit of a loss as to how best to help him. She has lots of ideas but it’s going to be a process of trial and error. She said that his high level of intelligence made it very difficult to work with him, because nothing gets past him and he is very hard to convince. She wanted to talk openly to me about Barney but didn’t want to offend me, so I told her not to worry about being offensive as all I wanted to do was to help him in any way possible. She basically said that the level of assistance Barney needs and the amount of time that he takes up is huge and that he is very controlling and dependant on me. She talked about Tarja and Jimmie attending Young Carers groups which would offer them support and advice, and a bit of a break from him. Then she said that she would like to take a 3 prong approach to helping him. She wants a family social worker involved, as well as a support worker, and F herself. Coming out to the house to see him is not working. He doesn’t take the sessions seriously and refuses to work. So next week the social worker, support worker, autism therapist and I are going to meet to thrash out some ideas. What F is suggesting is that he goes to a therapy centre where he has therapy in a room with a one way mirror. The support worker will work with him in that room and he will not know that his parents are watching through the mirror. F will be with us watching his behaviour and offering us advice and training in how to deal with it. The support worker will then come out once or twice a week to carry on with teaching him these life skills at home, and F will concentrate on teaching me the skills. The family social worker will be making sure the family as a whole is not suffering.
I was quite surprised. For the first time someone is seeing the situation in a worse light than I see it! But actually I think she is right. It is a relief that someone who knows about autism can see how difficult things are at the moment. I often wonder if people think that I whinge a lot and blow things out of proportion, and dramatise them. As Barney can behave pretty well when we have company sometimes. It is a relief to have someone actually tell me that they can see the amount of strain I am under, and they can see that I am having to cope with way more than is ‘normal’.
I don’t think I am being very eloquent here. I feel like I am not really expressing what I am trying to say. My mind is all over the place at the moment. I am stressed, unwell with this hacking cough, tired from constant broken sleep as Rosie also has the cough, and emotionally drained from the grief of my friends baby passing away. I guess I am not in the right frame of mind for positive thinking at the moment.