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.

Miss me but not too long

At the moment my life is surrounded by loss. The loss of my much loved Auntie M (pictured here with Uncle J in Switzerland), the serious illness of my other Auntie and my Mum facing the prospect of being the only surviving sibling. This is not an easy place for Mum to be, a lonely place and a nightmare which she has no choice but to live through. Naturally this is taking it's toll upon her as stress bites and takes hold.

My Uncle J who is missing my Auntie dreadfully is coping well albeit sadly and about to embark upon a trip back to his native Switzerland to see his children, grandchildren, great-grandchildren and old friends.
One of his old schoolfriends who was widowed 3 years ago recently wrote to him sending a beautiful poem which she had thoughtfully written in both Swiss and in English. It was so lovely I copied it and am reproducing it here.
So to anyone who reads this and has known the loss of a loved one I hope this helps.

Miss me but let me go

When I come to the end of the road

and the sun has set for me

I want no rites in a gloom filled room

Why cry for a soul set free

Miss me a little but not too long

And not with a head bowed low

Remember the love we once shared

Miss me but let me go

For this is a journey we all must take

And each must go alone

It's all a part of the Master's plan

A step on the road to home

When you are lonely and sick at heart

Go to the friends we know

Bury your sorrows in doing good deeds

Miss me but let me go.



Those non-rhyming poems

Have you seen those poems which don’t rhyme but which tell a kind of story? Well here’s mine and it sums up life with J over the past few months pretty well! It could be crap but hey – it’s the first one I’ve ever written so bear with me.

Judgemental comments and discrimination

We feel these much too often

Critical words cut like a knife

As my son and I go about life



He doesn’t see the world as you and I see the world

His world is blurred and at times confused as he seeks to make sense of the myriad of social situations.

At times the world is filled with sounds too much for his acute senses

Other times he is filled with emotional meltdown



James wants to be a “good boy”

One who follows the teacher’s instructions and not the “bad boy” who cannot always.

Yet his teachers say he’s good, sits nicely and is well behaved

But my boy does not see this in himself :-(



His deep thinking and breakthroughs are my real salvation

“Will you be okay without your wife” said to my recently bereaved Uncle while stroking his arm.

Oh so proud that he recognised grief and sought to comfort, that he can care for others despite his difficulties.



Another week and new achievements, a karate badge, Star of the Day and then Star of the Week in school,

A school who made such a positive song and dance about his achievement

Oh so happy and so proud



My son gives me Always Unique Totally Inspiring Special Moments

Love knows no bounds

And I give thanks to God for giving me James

A Day in my Life

Quite often I reach the end of the day feeling as though I have accomplished nothing and it’s not a satisfying feeling. Today has been one of those days and as I ran a bath for J I reflected upon what I had actually done since waking up this morning. If ever you have this feeling of uselessness I can recommend the reflection – it’s quite an eye opener. The timings are a bit approximate but everything listed here happened today.


So

6.40am: Awake and out of bed, drink coffee, plan on tidying up!

7.00am: J awakes and staggers downstairs – how he manages this with an 11pm “falling asleep” time I have not yet got to the bottom of.

7.30am: Prepare breakfast for J – drink second cup of coffee, wash up.

8.30am: J on the loo having not been able to open his bowels for 5 days despite copious amounts of Senna. I sit and rub his tummy, encourage him to rock and blow bubbles to no avail. Dry his tears, reassure him that yes he will go. Run first bath of the day for J as he is overflowing and soiling.

9.00am: Help J out of bath, encourage him to dry himself and put on clean clothes

10.00am: Receive e-mail confirming that S and IW are coming over this evening, housework now more of a pressing issue.

10.30am: J playing game on computer – rages and melts down when laptop overheats (as it does regularly). Calm J down, suggest he watches The Never-ending Story which has just started on TV.

11.15am: In Tescos doing the shop without J as J’s Daddy is in Essex at the moment.

12.00MD: J’s Dad prepares bacon sarnies – lovely

1.00pm: J sat on the loo again sobbing, agrees to suppository which is given, put timer on for 20 mins while J lies on the sofa

1.20pm: J goes back to loo and pushes out suppository but nothing else, more tears and more overflow and soiling. Run J a second bath, put clothes in washing machine and look for washing to add.

1.50pm: J out of the bath, clean clothes found, and encouragement to wash and dry given

2.30pm: Sit on Facebook chatting to a Mumsnet friend in Scotland who is balancing motherhood, work and study (my hat is off to you EP – it isn’t easy).

3.15pm: J rushes to loo and produces! Hooray! Help him to clean himself up and find clean pants, put the second soiled pair in washing machine.

Have bath and wash hair and wonder why there is so little hot water forgetting there have been two baths run already today!

4.00pm: J rushes to loo and produces again! I think this is the definition of a good clear out and much needed! J cleans himself up in a fit on independence but misses some areas!

Put hoover round, wash up again, take rubbish out to back gate, wipe kitchen surfaces and return to living room to find J has brought the hamster downstairs and is sitting with her on the sofa. The cat watches with ill disguised interest. Encourage J to put Bramble (hamster) in her ball so she is safe from hunting eyes, ears and claws.

4.45pm: Take hamster safely back to her cage and shut her in. Evict cat from inside the hamster cage where she has gone to explore.

5.00pm: Slobbing on sofa drinking juice.

6.00pm: Clean cat litter tray - take bag of soiled litter out and replace with sparkling clean litter (cannot wait for summer when hopefully cat will use the garden).

6.30pm: Notice J has very – ahem – unclean pants on – run him the third bath of the day (hope this is the final one).

J protests about a third bath – explain in simple terms that he has had the clearout to end all clearouts so needs to be clean otherwise will get sore. J agrees to bath.

7.00pm: Sit and write blog while J splashes in bath. Prospect of wine and curry looms – just hope am not going to be too tired to enjoy all!

Housing!

For the past year J and I have lived in the local sink estate. I hate the term "sink estate"as it condemns anyone living there as the type of person to be avoided.  I have seen terrible things here - a fight among two girls and a man which ended with one of the girls leaving wheeling her six month old baby. I have seen blatent drug dealing and witnessed and experienced lots of anti social behaviour. On the other hand I have also had good neighbours, people who like me are just living life peacefully, going to work, coming home and raising children. I have seen all the work which goes on here to try and promote community cohesiveness. There is an active community centre, football coaching, a cybercafe, Health and Wellness projects and a regular newsletter advertising upcoming events for residents. In short it's not all bad here apart from a few bad apples - and everyone here knows who these people are.
With J's diagnosis I decided without much hope to apply for a housing transfer. J is very very active and there are times when I wish we had a garden so that he could run around outside safely and burn off some energy. The Occupational Therapist also suggested a garden would help as it could contain a small trampoline which would help J's hypermobile joints.
I sent in a transfer application and completed a medical form regarding J and sent this back with a covering letter and photocopies of J's medical letters. I heard nothing and initially thought that J had not passed the medical officer's assessment of need. I was told by a neighbour of J's grandmother (who works in housing allocations) that the medical officer was notoriously sparing with what he would pass and what he wouldn't. To me with an extra bedroom above my needs it would seem he had decided there was enough room in the house to meet J's needs. Then out of the blue a letter came stating that we had been assessed as "Band F" and "Medium Priority". I was delighted as obviously the medical officer had given extra housing points for J. My Mum's neighbour though was negative " you'll wait forever" she said "the two bedroom places are in such short supply they are going to those on Band C and above". I was a bit dejected by this but decided that I would make the best of things and splash out on carpet for the spare room and vinyl for the kitchen, bathroom and toilet. It cost a small fortune but was worth it as everywhere looked so much better. This was August.

Last week and again out of the blue a letter came stating that we had been reassessed and were now in Band C (High Priority). I was over the moon as we were now in the magical realms of "Band C and above" but still expected a long wait for re-housing. On Saturday I recveived a formal offer of a property near to my Mum and sister. I drove out to see it immediately, it's a little redbrick house built in the last five years or so with a good sized garden for J. It had evidently been left in a hurry as there was still washing up in the sink. A note on the front door stated that "the rabbit has now been rehomed, if you have any queries contact S at Swan Housing".

Yesterday I took all papers to Swan Housing and an application form, the Lettings Officer chatted for a while and said that there had been panic about the rabbit with the staff even being asked if they could rehome him until someone else stepped in. The Lettings Officer said she would get a letter with a formal offer out to me and we could arrange a viewing as soon as possible.  Driving back via the house I could see a small truck packed to the hilt with property from the house. The men clearing said everything had been left including baby photos and children's clothes. I found this sad - someone had evidently just walked out of the door taking a child (or children) two cats in baskets and a small bag according to the neighbour. The men clearing thought there might be a debt such as rent arrears behind the sudden vacation of the property. All the property goes into storage until the owner can collect it.

I hope to be in within the next two weeks all being well and am surveying this house with despair - so much to organize and pack. Thank goodness for supportive family who have simply said "don't worry we will all help". I love them all so much and am feeling so fortunate.