Happy Easter!

Musically my heart belongs to Kate.

Kate Bush. The Hounds of Love album cover

I have loved the voice and music of Kate Bush ever since I was a teenager... listening to her music both then AND now is almost a spiritual experience.  Her voice, lyrics and music speak to my soul and it's always moving.  The music is beautiful, quirky, experimental and sometimes just downright odd  - Aerial Tal for example where inexplicably Kate has recorded her voice over the top of a singing blackbird.
I started with The Kick Inside with Wuthering Heights among other fabulous tracks. The album was a commerical success and written by a girl not yet out of her teenage years.  EMI having heard some early work when Kate was younger were quick to issue a "development contract" allowing her to hone her writing and dance skills.  It knew a good thing and fired by the success of the first album encouraged Kate to rapidly release a second album Lionheart which, while it sold well was not the commerical success of the first one. When you consider that Kate released her first album in 1978 and her second album just 10 months later it seems amazing that both should have been well received.

The third album The Dreaming  which was Kate's first sole produced album, was a commercial flop and Kate retreated for three years before returning  in 1985 with arguably the best album of the decade in The Hounds of Love which was a massive commercial success.


The Hounds Of Love also experimented for the first time with a secondary insert - The Ninth Wave which looked at the fear of someone stuck in deep water right until the last moment with The Morning Fog and the light but is the person alive and rescued or reborn in a new life beyond death. Kate doesn't explain and I don't need her to - it's lovely as it is. I also love The Jig of Life with it's Irish influences - a nod to Kate's mother who was Irish.

Kate with the Trio Bulgarka

The Sensual World with its inclusion of the the fabulous Trio Bulgarka - a Bulgarian Folk Trio who sang Bulgarian Folk music and who were heard beautifully on Rockets Tail is another favourite. Rocket's Tail ? Well it's about her cat of course.

The Red Shoes which was scarcely out of the CD player when I first got it with another track about her Mum in Moments of Pleasure.

All albums which were welcomed and loved for varying reasons. All which spoke to me in different ways and which were played a different times.

Several years ago it appeared that Kate had stopped writing music and no new work was going to be forthcoming. Over that period of time I heard rumours and snippets of gossip... Kate was now a recluse..... Kate had had a baby.... there was never going to be another album. And then suddenly in 2005 there WAS a new album - Aerial.  I had known for several months the album was on it's way and eagerly anticipated the new and long awaited music.  While this is not a review for the album  (apart from to say I LOVE IT) I have to say that there is some beautiful stuff on there. Music and lyrics which dealt with some parts of Kate's life such as "The Coral Room" which touched on Kate's memories and sadness about the death of her mother. The lyrics were both beautiful and devastating as a tribute to her Mum. It used metaphors about planes crashing down not as discussion of war but to describe the awful feelings which accompany the sudden death of a much loved relative. I think you would have to be fairly hard not to be moved by the lyrics ".....my Mother, and her little brown jug, it held her milk and now it holds our memories".


Then back to happy times with Bertie - Kate's tribute to her son. And oh I am right there with her, really feeling and understanding the sentiments she describes... "here comes the sunshine.... here comes this son of mine.... here comes the everything". Oh yes Kate I am with you on that one. J is an utter ray of sunshine with "truly the most fantastic smile I've ever seen" and he is indeed my "everything".
His bright and shining eyes as he describes a Lego creation to me, the imaginative and creative thought processes which are manifested in whatever Lego rocket he has built are amazing. And then at bedtime when J absolutely does not wish to succumb to sleep I am with Kate again as J becomes "the most wilful" and yet "the most beautiful" child who can wrap his mother around his little finger.

And the good news - on May 3rd a new Kate offering is released. - Deeper Understanding. It's a rehash of some of her older stuff with new interpretations - it will be odd, quirky, loved and hated in equal measure - I have already pre-ordered my copy. Even better Kate is rumoured to be working on new stuff.... I can't wait.

It's possibly too soon to cheer but.......

Medikinet capsule - I hide the contents in cereal.

I attended a meeting in London with J yesterday and he sat through two hours of discussion and was an angel. He talked incessantly (nothing new there) but he concentrated on his Lego, his DS Lite and on a mini Etch-a-Sketch. Despite all the noise and distractions J sat and concentrated. I cannot put intop words how big a deal this is. Is it the medication? Probably too soon to say but it's an improvement.
When we got home J totally spontaneously took a book from his book bag, sat down and read it to me from start to finish - another first. Wow!

And on a positive note the ConDems have decided NOT to make any changes to children's DLA for the present time. I reckon the Tax Credit premium is ripe for picking though.

DLA and Despair

Fifteen months ago I massively decreased my hours at work to support J emotionally and psychologically. More and more problems were surfacing at school and I had a child whose self esteem was rock bottom. The decrease in hours coincided with a move to a council property which was all I could afford on my lower income so was very welcome despite being on the local sink estate.


Despite the decreased rent my finances were in dire straits as I was limited once the rent and council tax plus other bills were paid. It was a hard time financially and at times I wondered if I had done the right thing. J was obviously benefitting from having me around much more though and even better I was able to sort out issues which had occurred in school there and then at home time.

In March 2010 James was diagnosed with Autistic Spectrum Disorder, Learning Difficulties, ADHD, Dyspraxia and Hyper mobility. With the diagnosis came a better understanding of J’s quirks and an affirmation that I had made the right decision regarding work hours. I was introduced to a local special needs centre where J could attend a variety of groups to help his social communication skills and my reduced work hours meant I could attend them.

The consultant told me to apply for Disability Living Allowance for J as she said I would need the extra income to pay for attendance at the centre (non-profit making) and extra petrol costs which given the increase in prices has made me realise how true this is. I applied and was relieved to be successful for J – J receives the middle rate care component and lower rate mobility. He doesn’t get a car or a blue badge with these rates and nor does he need them. He is more than capable of walking but requires constant adult supervision outside by roads as he is very distractible, impulsive and still not able to always remember that cars travel on both sides of the road. An instruction to “look both ways before you cross” can still have J looking both ways as instructed but not actually seeing the cars and stepping out. He has on those occasions obeyed the instruction quite literally and “looked both ways” but not made the connection that he needs to wait if cars are coming. Thankfully this IS improving slowly but J is still not reliable and I would fear for him if left to his own devices.

The middle rate care component relates to J’s hyper mobility and dyspraxia which make it hard for him to manage normal everyday tasks which others take for granted. For example using a knife and fork remains a closed book despite input from me and limited input from Occupational Therapy. In addition J needs routine and instruction to manage day to day tasks, dressing himself takes a long time (so I end up often doing it for him on school days), he needs step by step instructions for some tasks, becomes upset with change to his routine and displays much more challenging behaviour when this occurs. Added to this are constipation and withholding (a vicious cycle) and the odd 2.00am bath to settle J when he has stomach ache or has wet the bed (many nights of the week), additional washing, soft cotton clothing which is seamless to stop him feeling irritated under his uniform as well as being aware of certain noises which can upset him and you can see how life can be unsettled but interesting with J.

With DLA came an increase in Tax Credits and for the first time since my hours were dropped I was able to manage financially again without panic and worry. It was a relief which I cannot describe but it made me feel secure. I was able to support J’s physical, mental and emotional needs by working part-time and I was no longer falling behind with bills and that gave me much more peace of mind.

J’s DLA is due for renewal next March 2012 and although I am tempted to write “still autistic” across the top of the form I am guessing in the current climate this will not pass muster.

So – to yhe current time and the plans of this new government for DLA which will see it being halved for children like J with higher functioning autistic spectrum disorder. Along with this cut will be the decrease in the tax credit premium and all in all there will be less money for children like J who need additional support which isn’t always obvious visibly.  J can walk, run, jump albeit fairly clumsily, he can be taken shopping (he is the “odd child” who walks rapidly up and down the aisles clapping, spinning, talking to himself and generally being very autistic). He can go to school with one to one support, he can build Lego and he can play with other children.

What he cannot do is understand social communication, the need to take turns, the fact that sometimes you lose in a game and that other people have feelings when he is in conflict with them. James finds conflict especially hard and his feelings of frustration can manifest themselves in physically hitting other children (thankfully rarely). At home it takes the form of stamping, slamming doors and shouting although this has decreased with work on anger and feelings. This is work I happily do with J and which helps him to see things from the point of view of others. It works especially well when worded as a question such as,  “how did X feel when this or that happened” so that J has to try and put himself in the other person’s skin – not easy for him due to his ASD.

So I am anxious about the plans for DLA – I cannot honestly say that J will be fine without my additional input at present, therefore increasing my hours to increase my income if J is refused DLA or it is massively decreased is not an option presently. Sadly I am thinking ahead to the possibility of a future without work. A colleague at work told me that the Govt needed to look at DLA “because of all the fraud”. When I pointed out that DLA has one of the lowest rates of fraud (just 0.5% of claims) she said that these fraudsters make it bad for everybody. Yes they do but it would make more sense to me to go after these fraudsters rather than plunge people caring for children or adults with a disability into a financial nightmare of anxiety.  I could go on and on about other issues as well, for example those with children who have severe physical disabilities and need continence pads - apparently only 4 nappies/pads a day are allowed regardless of need - something David Cameron promised he would tackle if he was elected.

The Government say that existing claimants will be protected – of course all existing claimants will need to renew their claims at some point at which time the new measures will come into force. But hey – “We’re All In This Together” – right Dave?

Medication Merry Go Round.

A few months ago I posted my anxieties and concerns about using medication for J's ADHD. In my experience of J he is active, loud, always on the go and keen to amuse others. In the school's experience J was very similar but was able to be kept "on task" with the one to one support of a Learning Support Assistant (LSA) during school hours. They also put in place regular "comfort breaks" where J can just walk around for 5 minutes to use up some energy and gave him the use of blue tack and other fidget accessories when he needed to sit still.  Despite these things (and there is nothing wrong with being active, loud and always on the go") J's ADHD seemed to me and his school perfectly manageable without needing medication. J IS very active but not "climbing the walls" - well not at school anyway. Of course J has days where he appears "extra autistic" and the the ADHD can become more problematic simply because reaching into J's headspace at those times is much harder. Thankfully those times are not a daily occurrance and so therefore medication did not seem a necessity to me.

Yesterday we saw the Consultant Paediatrician who was wonderful with J, she made him a paper frog which could be "hopped" across the room with a bit of practice and watched J as he flitted from one thing to another with scacely any level of concentration. We discussed medication and I said that J appeared manageable in school and outside without it. The Consultant looked at J again and asked about reading and other academic progress which I said was all assessed as "below average" despite effort being assessed as "very good" and "excellent".
The Consultant then said that in her opinion J would benefit from medication as she felt he was a bright child who was currently not achieving his potential simply because his brain was functioning in such an erratic manner when it came to concentration. In her opinion medication could make a huge difference to J and help his level of concentration so much.
When I mentioned that J wanted to learn the Clarinet she more or less laughed and mentioned that "two wrong notes and the instrument goes across the room". I have to say she has a point as I can well picture exactly that happening.
So - I have agreed to a month of medication which is given once a day and wears off after 8 hours. If it does not help it can just be stopped - the body apparently does not become dependant on this drug (we'll see). I am under no illusions that this will be a magic pill, I know it doesn't work like that but I am prepared to give it a go and see how things work. 
I agreed to the medication before but didn't give it after a week or so as I saw no difference and J didn't want to take it.  The Paediatrician says the previous dose was very low - too low to see any difference. This time although J starts on the low dose it increases (doubles) after 7 days and a week later goes up again for a further two weeks after which I will evaluate with the school to see if any difference has been noted.
Another issue is that J just refuses point blank to take the medication so I am having to break the capsule open and hide the contents in his breakfast which just does not feel right to me. I am J's security - the one person he trusts most in the world and it feels very deceitful to be making him take this medication in such an underhand way. On the other hand if he was diabetic and refusing medication I might need to be equally sneaky. Both diabetes and ADHD affect life chances and opportunities albeit in different ways and just because we cannot test for ADHD in any visible way does not mean it isn't there.  So in addition to peanut butter on toast for breakfast this morning J also had a chocolate mousse with a hidden ingredient. Tomorrow it will be yoghurt and if a different child emerges in 1 months time I will eat humble pie and admit my prejudices against medication were wrong. Watch this space........

Hogwarts Castle

J follows the instructions

Just recently J has discovered the world of Harry Potter and friends; it started with a Lego Wii game and progressed to the first film, then the second and finally a reading of the first book in small stages when J could be persuaded to sit down. So I was not surprised when the more recent Lego requests became less for Star Wars and more for Harry Potter and even less surprised when the kits J was eyeing were in the £70 - £100 mark. This was a difficult issue for J as he does not have a birthday mid-year but 5 days before Christmas, therefore asking him to “put it on your birthday/Xmas list” seemed a tad cruel.

So – what to do? J’s Dad hit on the idea of asking J to achieve something which he finds difficult I will spare J’s blushes here but sufficient is it to say that it involved the bathroom! Once the task set had been achieved 30 times then Dad would buy J the Lego Hogwarts Castle retailing at the time for £102 :-O. J had the ultimate control over when this was achieved and could achieve 7 times a week of 3 times a fortnight – it was up to him but he quickly cottoned on to the fact that results meant stars on a chart and that stars on a chart meant Lego once sufficient had been achieved.

So fast forward to last week when the Lego arrived, J had achieved his goal some time previously and was eagerly awaiting the parcel from his Dad. It arrived – a massive box of Lego with 10 bags for construction and a three large construction books. My heart sank from experience of hours with Star Wars Lego space ships lovingly built and broken into loads of pieces rapidly so that J’s own designs could be built. I wondered how long it would take but was pleasantly surprised when it became apparent that Bag 1 constructed all the figures and beginnings of the castle meaning that the Lego could be played with immediately rather than waiting for all to be finished. My second nice surprise was how easily J followed the instructions to the set - it was lovely. He had constant supervision, but largely built the castle himself with just occasional guidance from me.

The castle took us 3 days on and off to build but once done it was beautiful – pictures do not really do the detail in it justice.

"Stained glass" windows



 J peeking through the finished castle with pride.



The "almost finished" castle.

Some thoughts about Spiritual life

The Sun and Moon by The Artistic Fox

“The word “God” has become empty of meaning through thousands of years of misuse”

So says Ekhart Tolle in his book “The Power of Now” which I have been reading on and off for several weeks now. It’s been food for thought, reflection and contemplation as I have been experiencing a bit of a rebirth in my spiritual life.

Who or what is God/Goddess? How does this divine force relate to my life and to those around me? Are the Atheists correct in their assumption and belief that there is no greater power?

I have always felt the presence of a divine force, I have not put any name to this other than God or Goddess and those names come from my experience of both the Christian faith and from Paganism. I am equally well aware that other will think all this is supersitious claptrap and each to their own.

As a child I was baptised into the Church of England and I attended a C of E School mostly.

I attended Brownies and then Guides both of which had an obligatory presence at the Family Service once a month, I attended a Sunday School and the Monday club which followed the next day. I went away for fun filled weekends with Min and Jack Bentley who despite being in their 70s were game enough to devise and join in all manner of active sports such as Rounders, Football, Cricket and a game which involved flour, water lots of screaming and running I seem to recall. They were great and a real positive influence on some very difficult teenagers with their interest and involvement.

Fast forward to nurse training and then the spiritual stuff mostly went by the wayside as I spent time working shifts and weekends became filled. At times I involved myself in Christian based stuff but to be honest it was no longer an important part of my life.

Life went on and although I still felt the sense of an “other” higher power, a divine spirit, I could not put a name to this other than to know that for me it was still there. I am aware others do not feel this connection and I do not seek to impose this upon others, however, it was and is very much there for me.

During the past 14 years I more and more identified myself as Pagan in my beliefs – a higher power was still there, the divine feminine and no crusty old (male) Priest between me and this higher power. I could talk to this higher power, I could spend time in quiet contemplation and feel a connection to the divine and the life force all around me. What I did not have though was a community with which to meet and identify on a regular basis and it’s only just recently that I have come to realise the relevance and importance of this for me. I am aware that there are many Pagan groups which meet regularly all over the country but there was nothing that I could identify with locally. This has always felt irrelevant and I thought and felt I did not need this community of others.
The catalyst for change has undoubtedly been the death of my Auntie M, a Catholic who celebrated her faith in her own way throughout life. Bad experiences of Catholic run schools as a child left her with a bad feeling about the whole Catholic Church so although she remained Catholic until the day she died she would not set foot in a church. I have other relatives who will not enter a Catholic church for similar reasons. Likewise my prior experience of the Catholic Church has been the Priest who conducted my grandmother’s funeral who was elderly, set in his ways and had little in the way of people skills although I do not doubt he was probably a kind man.

So the Priest who arrived to discuss my Aunt’s funeral was a breath of fresh air, I did not meet him at this stage but he apparently turned up in jeans. T-shirt and trainers. He was very human, knew all about the grief of losing a loved relative to cancer as his own Mum had died when she was in her early sixties from the disease. He was great with my Uncle and very open to fitting in the requests of family to the service which he performed with a real compassion for the relatives of my aunt.

I met him again after my other aunt was sadly diagnosed with an inoperable brain tumour, he talked again of his Mum and the understanding that for relatives as well as the patient cancer was a nightmare which nobody wanted to live through but which inevitably some of us will do. He was supportive and understanding - even better he is quite up for a good laugh so thank you FrB.

This has all coincided with J wanting to attend church – his friend M goes and there are cakes and biscuits on sale after the Mass – no guessing what J’s motivations are! In addition his friend is attending Holy Communion classes and J wants to as well. Just one problem – J has never actually been baptised so has to do this first. The priest has suggested commencing the Communion classes in September with a Baptism being performed around Christmas time near his birthday. It all feels very strange..........

So – here I am after 20 odd years of not going to church but having my own beliefs about spiritual life, now actually attending a weekly Mass in the local Catholic Church. The parallels with Paganism have not escaped me – loads of symbolism, lots of use of various elements, baptismal water (self explanatory), Holy Spirit (Air and Spirit), Candles and flames (Fire), Ashes at various times (Earth). And I am finding a peace in attending this weekly service, making time for reflection and prayer – just as I always did but with a community of others and that feels important and right.