Last Week Was Tricky, This Week Is Going The Same Way...

Oh yes, last week was tricky, Sarah was on the edge all week, mainly due to her service review meeting the Thursday before last. The idea is good, every six months we look at the services Sarah receives and review them. The services she receives were set up four or five years ago now and have never really changed. Efforts are made to tinker with the edges, but nothing of any importance is ever changed, there is no need. Improvements would cost money, there is no money so there is no point in wasting time asking for improvements when you know it is all talk and will come to nothing, especially now that Sarah has to attend the meetings. She listens as we talk about the stuff she does, says yes to everything and retains information about who was there, some of what they said and of course, because it is her speciality, all the dates and times that may be mentioned.

Times and dates are important to Sarah, they form patterns and are part of the structure of her life, numbers in the form of time and dates are constant, they roll around each day or week or month or year, and Sarah has a phenomenal memory, she knows what happened at a time or date and watches out for it happening again, it is all tied up with her routines. Most of her challenging behaviour has its roots in a routine break. She still talks about the loss of the 9.00 o'clock news on BBC1, it was an important part of her evening routine and now it has gone, the fact that she still talks about it is an indicator of how important all this is to her.

This meeting has been called at short notice because of various problems with annual leave, sick leave and maternity leave, so 'can we have the meeting tomorrow?' In a normal week for Sarah she would not be in the day centre on a Thursday. I was told someone had spoken to Sarah and she seemed OK with it, so I said yes. I don't know why it had to be pulled forward, it could have been delayed, it would have been easier all round if it had been, although I'm saying that in retrospect. Sarah was agitated when she got in on Wednesday and by means of bribery (sausage bap in Tesco.) I managed to get her to agree to come with me to the meeting. It wasn't straight forward, believe me.

Attending the meeting are all the people who have input into Sarah's life, so that is her Care Manager, a very nice lady who's background is in nursing, she does all the paper work and telephoning as far as I can tell, she does what a social worker would do, but apparently we don't need one of those. Actually, we do but there are not enough to go around. Then Sarah's team manager in the day centre and the care assistant designated to her, they are two lovely, down to earth, over stretched and over worked ladies. The other regular attendee is a representative of the company that sub-contract from the council as carers, in Sarah's case, someone to take her out of 4 hours on a Thursday afternoon to do something interesting. Worth noting at this point that none of these people have any real knowledge of autism and how to deal with it, but they do have a good basic grounding on dealing with people with learning difficulties, so we're half way there. I should also say it this point that they are all aware of Sarah ability with dates and times, but tend to treat it as a little quirk which is quite handy when you want to learn someones age or be reminded of something. They do not understand how important to Sarah all these little fact are and that they are the fabric of her universe. There are a few others who should be there, are always invited but never turn up and have even stopped sending apologies. The person who is called in to address the more obvious autism problems is the community nurse, another lovely lady who expertise in dealing with autism is more to do with the fact that she has an autistic son than any formal training, but I don't let on that I know that because it would compromise her professional position, She understands the importance of time and dates to Sarah. Sarah has to be there because she is the one receiving the services, and then there is me, the amateur, no proper training, just her mother. I'm there to speak for Sarah.

So we get down to business, yes there have been few problems, there always are, this time to do with staff members who are leaving, moving, retiring or whatever, pretty basic stuff which can be dealt with by just remembering to keep her informed, if she is told what is going on, she's fine, she works it out. She isn't stupid, she's autistic, they tend to forget that. But here comes the bit that has caused Sarah and consequently me and Bill, and the dog, come to that, getting on for two weeks of anguish. The lady from the outside contractors announces that Sarah is down for six hours a week from them... Sarah, her care manager and I are are a bit surprised by this, she currently gets four and she rarely uses all four because if the weather is not up to much for instance, there is not a lot to do in and around Aberdare, so her and her carer go over to Merthyr and wander around Matalan for an hour and then have a MacDonald's and come home, and believe me, if I could stop this I would!! But, this has become one of her routines and it's what she says she wants, so that is what happens. So now we've got another two hours to fill, and we sort of have to because the system works on a use it or loose it basis, don't really want to loose it but would love to be able to do something meaningful with it. So I tentatively suggest we put those two hours to work one evening, and maybe she could go swimming, or go to a gym (and work off the bloody MacDonald's they've been feeding her). Oh how well this was received! The mother had come up with a good idea, everyone agreed it would be a good idea, and Sarah is very enthusiastic, we establish that there is a suitable person available to take Sarah out on a Tuesday evening from 5.00 till 7.00 or there abouts, and the lady who takes her out on a Thursday afternoon will come along with the new carer and introduce her to Sarah and all this will happen on 29th September at 5.00pm. Meeting finished soon after, Sarah had her sausage bap in Tesco and we went home. She went out with her Thursday carer as usual...

Next day she didn't want to go to the day centre, already been there four times that week, I conceded. From a Sarah perspective, it made perfect sense, she's bored stiff there most of the time anyway. We had an uncomfortable weekend, we were all a bit snuffly, not a cold, just sniffles, Sarah stayed home on Monday. Not a good start to the week, Tuesday and Wednesday went alright, no real issues, Thursday could have been better since we didn't get any positive news from her afternoon mooch around the shops carer about the new Tuesday evening carer she was supposed to be introducing to Sarah at 5.00pm on what I am now calling today. In fact she new nothing about it and could not imagine who they could possibly get to do it. Oh joy! we are in for a rocky few days. Sarah's cooperation levels dropped to the minimum and we had a weekend of almost total non-cooperation resulting in the last resort action of sanctions, which causes us more distress than it does Sarah. Anyway, sanctions in place she went off to the day centre yesterday secure in the knowledge that I would be trying to find out what was happening.

9.00am sees me on the phone to the sub-contract carers, they knew nothing about it, and the representative who was at the meeting where it was all agreed is on holiday. Apparently there was nobody else available to speak to.. Hmmm. I'm not surprised, I've had misgivings about this lot since they first appeared on the scene, but there you go, they are the professionals, I'm not. As a point of interest here, as the telephone conversation progressed it became apparent that they didn't even know that Sarah was severely autistic, but there you go, as I say, they are the professionals, not me. Phoned Care manager, Not available for the rest of the day, can I leave a message and she'll call back, and no, there is nobody else available to speak to.. Hmmm. Sarah is not best pleased with the lack of progress when she gets home, but copes well. As the evening goes by she becomes a little more agitated by the situation but copes. She hardly slept last night and focused very hard on the fact that in the meeting she was given a date and a time where something she was looking forward to was going to happen, in effect, a promise was made, and that promise was broken.

This morning she is resigned to the fact that she is not going out this evening, she is not best pleased. She had set up the new structure of her week, based on what she heard and believed at that meeting, and has now got to rearrange her mind to accommodate an unknown. I was the only person in that meeting making notes of times and dates because I know she is autistic and I arrange things taking that into account. I will say it again, she is not stupid, she is autistic. These professionals forgot about the autism, the boxes are ticked, problems can be smoothed out later, but for Sarah these problems are all encompassing, they touch every aspect of her life, but what do I know, I'm just her mother, we've never been apart for more than a week in nearly 24 years, but of course, I've no training in disability and caring. I am not a professional, I know nothing.

At 10.30 this morning I had a phone call from her care manager, saying she was just put the finishing touches to her care plan and copies would be sent to the appropriate people, which includes the sub-contract carers, so that we could make the extra 2 hours a reality, so, only a week late but do-able, and could I just remind her of the day and and time we had put in place for the extra 2 hours! Good job I took notes! Ha! even if I hadn't taken notes Sarah was there and she knew what was said.

Now here comes the spooky bit. The postman knocked on the door about 5 mins after I put the phone down, 120 crocus bulbs, vast amounts of junk mail and an envelope addressed to Sarah from the Community Support Team. It was a letter from her care manager with a copy of her new care plan, signed by us all, with all the details of the extra 2 hours with days and times identified. It is dated 25th September. Now I know Dr Who is associated with this area now, what with Torchwood being in Cardiff Bay and all, but five minutes from putting down the phone to the postman knocking at the door with the document under discussion is going some! I know I keep saying Sarah isn't stupid she's autistic, well I'm not stupid either, in fact I know I've had more education than anyone else in that bloody meeting, but I'm the mother, I don't even get a copy of the care plan, I haven't had the right training. I mean, I've only been looking after her for the last 23 years, how could I possibly know what Sarah needs or wants.

That's it, up to date, I am bloody furious. I am the only person at that meeting who has to deal directly with the consequences of the failures, which now seem to be inevitable, of ill prepared discussion, by people who with the best will in the world, do not understand how Sarah functions and do not realise that she understands what is being said, her problem is being unable to respond in a way that they will understand. After 23 years I know what she is getting at, I can read her eyes and her body language, that is how she communicates best. Not one of the other people in that room knew how to look at her without repeating themselves, she was responding, they just don't see it. But what do I know, I'm just her mother....

Rant over... next post will be on the niceties of planting crocuses or the strange behaviour of nuthatches or what the dog did or something...