Wednesday, 30 November 2011

Sense and Sensibility!

Thank you to my lovely GP for her ever so logical advice and support

"No don't resign from your job, it might be the right decision long term but don't do it while you feel like this"
"Get some advice from your Human Resources department about various types of leave".
"No I understand that you don't want to be the person who is always off sick but this is why you need advice from your HR and a look at how you would manage financially if you did leave work for a period of time".
"What you need is some breathing space while you look at your options".
"I think increasing your hours is not something you can commit to given the needs of J for care".

So I came away feeling more settled, she is quite right in saying that NOW is not the time to be making any decision about resigning or not - even if resigning DOES turn out to be the right thing for both J and I.

As far as J goes there have been more difficulties, primarily it seems to boil down to the level of work expected from him now he is in Year 4 and I will have to go in tomorrow morning to have a chat with his lovely LSA who is so good with him to see if we can find a way through this between us all.

It has all been very demanding emotionally  for J and I am starting the process of looking at future schooling once Christmas is out of the way.

The schools I will be looking at initially are the senior school which J's school feeds into, it's mainstream and small for a secondary. If J was to go here then he would attend with many children he already knows. My only concern is that as time goes on he will become socially isolated among his peers.

The other school I will look at is a non mainstream school which has been suggested as suitable for J, this is a special school which takes children who have various forms of learning difficulties. It is smaller than the mainstream school and has a higher staff to pupil ration along with extra input from various professionals which the meainstream schools just don't seem to get.  On the negative side, waiting until Year 6/7 to try and get a space for J is not really an option as it will be oversubscribed by then so if J's future educational and social needs are to be met there then I need to prepare for moving him at the end of Year 4 or 5 and NOT wait until Year 6 when every other child with SEN is also being put forward.

Of course the best preparation for life in mainstream society is a mainstream school, however if J is likely to experience social isolation there then he might well do better attending a special school and building up friendships with children who have similar issues to him.

It's a big decision and until I look round to see where J might best "fit" then I will be mulling it round in my head.

J just keeps saying "I want to go to another school" but this is due to his current difficulties with Maths and I think if we can sort that out then he will be happier again.

Monday, 28 November 2011

Advent and all that....

So we are rapidly approaching Christmas and I am at a crossroads with regard to how I tackle the next year with J. As my recent posts have shown, J is experiencing some real difficulties at the moment and as a result so am I. My depression which was under control has raised it's head once more and keeping a positive outlook is hard. I have reached the stage where somethiong has to give and I suspect that what will give is my job. I only do 15 hours a week anyway but even that seems like just one more thing to achieve on top of being a good enough parent to J and keep a routine for housework going. I have always felt that J shares traits with me and feel I am probably on the autistic spectrum myself. Having said that, I am extremely disorganised (ADD?) and would thrive if I had a routine I could follow religiously every single day. How to get that routine is beyond me though and all I can see as a solution to all this is to stop working and make J and the house my job for a few years while I sort all this out.

I am constantly exhausted with sleepless nights, sleep apnoea when I do manage to sleep and the late nights of J. Consequently finding a way of getting organised into any sort of routine is beyond me much of the time.

I have made a list of the pros and cons of my life with work and without work which was helpful but depressing at the same time. The Pros being that I love my job, that it gives me time to be myself and do something for myself. It also gives me a lease car which is due back in December and the (a negative)refusal of a new vehicle unless I increase my hours which initially I felt I could do. The negative aspects of working are that I am around much less for J in my mind which is already scattered and disorganised. Ironically I am probably worse off financially IN work than I would be out of work. I already find my life hard to organise with J and work is an added stress for me as I worry constantly about missing anything due to my tiredness.

All in all I seem to have made the decision in my head that I will have some time off and am already trying to decide how I will word my resignation letter. I know my manager will not wish to lose me as we are already shortstaffed but I have no desire to be the person "always off sick" either so unless they can agree some parental leave then I am out of there.
How I will cope without a car is scary but I will sell my iPad and start a car fund, as long as I have something to get me from A to B then I can cope.

Tonight I discuss it all with my GP who is logical, sensible and lovely, and at the moment these are the qualities I need.

Monday, 21 November 2011

Annual Review for Statement of SEN

So we had the first annual review today since James' was first given the elusive Statement of Special Educational Need.  There were positives and negatives as I knew there would be and a long discussion about the difficulties James currently faces in school. Academically he has done well and progressed beyond all expectations in both numeracy and literacy. At the age of almost 9 he can now read - hesitantly and with lots of pauses but a world away from where he was a year ago. Thank you Mediknet for the change there.

On a negative note J's Personal, Social and Emotional development has not progressed and his attainment there is still measured in P-scales (recorded when a child is still working towards  National Curriculum level 1). Although this was not a surprise to me given J's recent difficulties, it was still hard to see written in black and white.

We discussed J's ability to remain in mainstream education right the way through his school years and like everything else there are fors and againsts. On a positive note he is achieving academically now and remaining in mainstream education with children who do not have his difficulties will be excellent preparation for life in a mainstream community as an adult.

On a negative note there is the risk that J will become more isolated with time as the gap continues to widen between him and other children of his age. Currently he has many friends in the playground but generally these friends are girls. The girls (and especially his close friend M) tend to mother him and he thrives on this. They also invite him to their parties while the boys do not - this is good but there will come a time when inevitably the girls will cease to invite him as well. If this is to be the case then an education in a non-mainstream school geared up for children with ASD and co-morbid conditions might give J more social contact.

Thankfully it is a year before I will need to really consider this and in the meantime I have been encouraged to visit  the secondary school which J's primary one feeds into and also the two local special schools which would see him through to age 16.

It has all left me feeling both positive and also a little sad. Without a doubt J is struggling at the moment and although I would not swap my lovely, funny and special little boy for anything in the world, there are times when I wish I could take away the difficulties he has, remove the autistic brain which makes his life hard and replace it with a neurotypical brain which would allow him freedom. But then I guess J would not be himself if that was to happen and I love him as he is  -I just wish his life was easier for him, I wish the labels didn't itch, the noises didn't distress, the changes to routine didn't upset. I wish he could settle in the evening and fall asleep with ease but that's just not how it is and all I can do is find the right support to help him cope with these things.

So onwards and upwards, a CAF to be completed, the Aiming High for Disabled Children service to contact and a major strop to be had with the PCT which after a year and a half STILL has no real Occupational Therapy service for autistic children with sensory issues despite letters promising parents that this was being developed.

Watch this space.

Saturday, 19 November 2011


So life continues to be a mixture of fun and stress here in the O&C house. J is continuing to do well on his Mediknet and his reading is now progressing rapidly.

On the other hand some things have not changed - least of all J’s rages which are prolonged and worrying when they occur. I can rationalise the lack of social communication skills but it’s still hard to manage and both J and I are usually exhausted after such incidents have occurred. In addition J is usually very distressed after any rage – he recognises he has lost control and it scares him. We continue to work on this with various resources and have identified the things which most set him off (frustration, fear, anxiety) and are beginning to work on things which might help.  Although I do not believe in second guessing any child I must admit to feeling some trepidation about his teenage years!

J’s rages are not daily occurrences however, I long ago took the view that if what he was doing was not actually harmful to himself, others or property that it was easier to let him get on with it and learn from experience than face the inevitable rage which occurs if he is stopped. This makes it sound like I sit back and allow him massive liberties and maybe to a certain extent I do, but it’s an action designed to help ME cope with his daily needs and to cope with HIM!

On the whole J is well behaved and when medication is used can be quiet and able to focus on an activity for 30mins or more. He has never been badly behaved in school   - to the extent that the teaching staff doubted he had ADHD (prior to diagnosis), however, with medication once he was diagnosed, his level of achievement increased beyond all expectations, he can now read – hesitantly and unsure but it’s a world away academically from where he was a year ago.

It isn’t easy though and there are times when I have to physically remove J from rooms (or physically remove objects from him) when he will not listen or stop what he is doing. Times like this usually end with J stamping upstairs to his bedroom and slamming his door as hard as possible, the door frame is coming away due to this behaviour.  It’s at times like these when I think I cannot cope with the combination of J, with the house, with work and it can all feel overwhelming. Sleep continues to be an issue and despite everything it is still after 11.00pm before J falls asleep at night – on bad nights I can add an hour or two to this.

So, on 31st October J left school and announced we were “going trick or treating”. In actual fact we were NOT doing this as I had a meeting to attend which I could not miss. In addition we have never done the whole “Trick or Treat” thing as the first five years of J’s life were spent in Somerset in a house 2 miles from the nearest town. It’s just not something I ever got into with J and consequently it never crosses my mind. J has never asked to take part in this ritual previously so forgive me for not having thought about it!

J did not take the information that we were not “trick or treating” well and began a massive rage which lasted for the next 2 hours on and off. He screamed, he raged he shouted, he lashed out, he kicked the glove compartment of the car hard and to be honest it was hard to drive safely. In despair and because I was at a loss I drove to my Mum’s for support with J, by the time we got there he had calmed down somewhat but still blew up on and off and indulged in a spot of head banging which he still does from time to time when he can’t cope.

It turned out that the rage had started in school with “tag rugby”, which needs a certain level of coordination which J does not possess, it continued into Maths (new class, new group, different teacher) and even his lovely LSA Sally could not reach him through his mood. I merely added to it when he left school, in his mind we were going trick or treating and Mum was saying “actually not”.

One of the hardest things to know with J is when his behaviours are due to his ASD or if he is simply playing me up.  In an attempt to try and be understanding, I often end up giving him the benefit of the doubt about some actions and he doesn’t always deserve this. So I could accept his frustration and disappointment about NOT “trick or Treating” I could accept that he found it difficult to express these emotions in a more acceptable way and yet part of me felt he was simply behaving very badly.

So – he rages.....and he is getting bigger.....and I am worried...and I am exhausted with the late nights, the lack of sleep and the difficulties in managing J as a single parent. This weekend his Dad is here and I am grateful but they have already clashed. M had said J could sleep in with him but lost all patience with him when he was fidgety and giggling at 10.30pm, the upshot is that J ended up in MY bed once more. Things have to change and I need help with J – proper help and not just a list of local support groups.....

Sunday, 13 November 2011

We all know someone who could work but chooses not to - don't we?

The post below is taken from "Diary of a Benefit Scrounger" and it's powerful stuff so I am reproducing it here

Well, there's that Jim at number 27. Have you seen his garden?? Out there all weathers he is. It's like the bleedin Chelsea Flower Show. Now you can't tell me he couldn't work? 

Jim is 62. He has epilepsy. He was born with it and back in the 50s, most people still thought you were possessed or evil if they saw you having a fit. His mother never used to take him out for fear he would have a seizure in public. He's never been able to drive. He gets "warnings" before the 4 or 5 seizures a week he has, allowing him to get inside to somewhere safe. No-one ever sees his disability - he wouldn't dream of talking about it with a neighbour. He still never leaves his home. The shame he grew up with never really left him. His garden is his life. It gives him joy and purpose. Somewhere beautiful where he never feels lonely or ashamed.

It's just got ridiculous! There's this girl in our village - never done a day's work in her life....and she jogs!! Hours she runs up and down with those earplugs in, round the village, out on the quiet country roads, sometimes she goes out in the morning and she runs til lunchtime!! Why should she get my hard-earned tax money just to do nothing?

Laura is 26. From the age of 6, both her uncle and his friend used to sexually assault her. She never told anyone, they said they would do it to her brother if she did. As she grew up she became more and more withdrawn. Sometimes they hurt her physically and she had to try to hide the bruises away. She never made any friends and ran away from home when she was 15. Living on the streets, people took advantage of her and she soon became a prostitute with a crack habit. At 18, she managed to get a place in a hospice and with the amazing help of mental health workers, counsellors and a safe environment, she got clean. She moved away, moved to a nice safe village, kept working on her past and found solace in running. All the time she runs, music pounding in her ears, she can forget. She feels free and alive. She has managed to start volunteering in a local centre working with other young people who've been through what she went through and hopes that one day, she might be able to make a career of it. She has never spoken to any of her neighbours, she's still too damaged, and she certainly wouldn't tell them about her childhood.

Do you remember Doreen? She never stops that woman, out at work all hours, looking after the kids, running em here and there. And all her husband ever does is lie around on the sofa watching daytime TV! 16 years it is since he worked! The man must have no shame. 

Karl served in the army for years. He lost many good friends. One night, just after midnight, he and his men were taking cover behind an old burnt out coach. A bomb suddenly exploded and every last man but him got blown to pieces. He was taken away and held for days with little food and light. They questioned him at gunpoint until he soiled himself, then left him sitting in the mess. He saw women raped and children left to die at the side of the road, their eyes pleading with him as he marched past. Since then, he's suffered from Post Traumatic Stress Disorder. He has terrible periods of depression, flashbacks, sweats and night terrors. He can't sleep and when he does he wakes up screaming. He barely pays attention to his family, and though the television might be on, he never sees the programme. He only sees one programme now, running through his mind every minute of every day. He makes Doreen promise she won't ever tell anyone what he goes through. She wouldn't dream of talking about it with her neighbours.


The BBC seems to be running a "Scrounger" season. You are being asked to judge our social security system in a flurry of documentaries, based on anecdote. A GP who "feels" it's unbelievable that we have so many people on sickness benefits, random women in the street who share stories like the ones above. No evidence, for the evidence is most certainly not with the programme makers. Rather they feed into a stereotype that is being used comfortably by all main political parties and the media to push through welfare reforms. We already have one of the toughest welfare systems in the developed world with the toughest sanctions and among the lowest rates of fraud. But you will never hear that from these documentaries. You almost certainly won't believe it now, but it's true. Pesky evidence. No. These "documentaries" ask you to ignore the stories that make up the person and simply judge your neighbour. Nasty eh?