Thursday, 11 October 2012

The Disability Diaries (The Life of J1) : A Very 'Special Needs' Harvest Festival

I have noted on many occasions how highly I think of my eldest Sons, J1, school.  I believe his time at the school has enhanced his life in almost every way possible.  It is the school, I maintain, that turned him from saying two words into a chatterbox.  It is the school that has helped him to develop a wonderful sense of humour.  It is the school that has made him accepting of other children his age, instead of being afraid of them.

For those who have no experience of being involved with a Special Needs school, they may think it would be very different to a mainstream school.  In lots of way it is.  Along with the teachers there is a much higher ratio of 'teaching assistants' in each class.  The school is usually also host to a lot of 'Ists' on a daily basis.  For example, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Music Therapists.  Outside of the classroom is an array of equipment; wheelchairs, standing frames, walking frames; mobile hoists; wedges.  There is usually a few people fixing and adjusting those pieces of kit. 

Instead of classes being host to a tiny cubicle with small toilet and sink they are built with a large 'changing place' and along with the more able-bodied childrens facility there is also a hoist, a changing bench and storage unit to hold all the individual supplies of pads.  There are an array of sensory rooms, soft rooms, quiet rooms - places children with the need for their own space can go and feel calm.  There is a full time on-site nurse to help ensure that all medication and intravenous 'food and drink' is administered correctly.

In the playground you will find all the usual items but in addition to this you will find a roundabout and swing that a wheelchair can be fixed onto.  A sensory garden with wind chimes and colour-makers.

However, in the midst of all these 'differences' many things are the same.  The school day starts at 09:00 and ends at 15:00.  They have morning break time and lunch time in the big hall.  They have Assembly on a Friday afternoon.  They have a school curriculum to work through, parent / teacher evenings, end of year reports and an Annual Awards Ceremony.

I did not know what to expect when J1 started.  I suppose I expected that he would be 'learning' a little in addition to his physical needs for Physiotherapy etc.  I did not expect him to be learning as much as he is - shame on me for not realising my sons capabilities and thank God for the school that they did! 

What I did not expect was that the children would participate in all the things I did at school.  I suppose I thought what with providing education as any school would and attending to all the extra needs of the children, they would have the time.  How wrong was I. 
 
Every year we attend the Christmas Fair, with many stalls being full of things the classes have made themselves.  It never fails to amaze me how they manage it.  We go along and are moved by the Christmas Play, with each class having their own starring moment.  Fundraisers are held each term, this one was a sponsored walk.  The entire school participates.  They have field trips regularly and a whole school outing in the Summer.  No child misses out, unless the parent feels it is necessary.  How a school does this, when catering for such a wide range of Special Needs is, in my opinion, pretty amazing.
 
One of my favourite school events however is Harvest Festival.  I think because I used to enjoy it myself.  It was exciting to go out to a different venue and sing with the school and perform whatever our class was doing.  Each year the local church opens its doors for our children.  We are treated to readings, songs, dancing and a reminder that we really should be grateful for the abundance of food we have available to us.
 
I think it is one of those triggers that it really is Autumn and I have already posted about how much I love Autumn.  It is also beautiful to see all the pupils doing something that every other school does, no matter what their disability.  It is a heart warming sight of inclusiveness that I am blessed and thankful for witnessing.   


Tuesday, 9 October 2012

I 'Heart' Autumn

A few weeks ago I wrote that I felt sad because Summer seemed to have bypassed Autumn and gone straight to Winter.  I am pleased to say, I think Autumn has come back fighting. 
 
I woke earlier than normal this morning and could not get back to sleep.  And that is when I realised it.  The air had a chill, that required slippers and dressing gown being tracked down.  I waited for the water to run hot before indulging my hands in it.  The thought crossed my mind of flicking the heating on.  But, amongst these thoughts of seeking warmth, the sun was peeping in through a crack in the curtains and when I pulled them back the vision was beautiful.  A vibrant clear blue sky.  A low sun.  A slight dew on the grass.  Autumn has finally arrived.
 
Many people do not like Autumn.  They see it as a sad period.  Summer has faded.  The trees are losing their lush green status and 'getting naked'.  The sun no longer has the heat to walk around sans jacket.  The long dark Winter is approaching.  I do not though.  I like it.  It always makes me feel nostalgic.  To me it indicates a new beginning.  I think this is related to the school year starting.  I always felt it was a fresh start when a new school year approached in September.
 
Yes, you had to get through a cold old Winter, but at the end of that lay the irresistible temptation of another Spring and Summer to look forward too.  Summer holidays to warm destinations were discussed and usually booked in the thick of Winter too, as 'something to look forward too.'
 
I still feel that way about school, but for J1.  Autumn Term is the start of being a 'good school mummy' - getting him there on time and with all the things he needs for that particular day.  For making sure the cupboards are stocked with plenty of healthy packed lunch items.  That school trip forms are signed, paid for, returned and written on the calendar.  That items for the Christmas Bazaar are collected up for donation as and when something suitable is seen.
 
It hails the start of a solid routine after the haphazard period of the Summer.  And this house does crave a bit of routine.  I say 'J1 is such a routine boy.' - I think he would be like that even if he didn't have disabilities, because I so strongly am.  I think that is why I struggle with the 'Toddlerhood' part of child-rearing.  It's too unpredictable, needing to run according to the mood / sleep had by said Toddler.  I think I become a much better mummy when pre-school starts.
 
Don't get me wrong, I am always pleased when the school holidays arrive because I realise how much I have missed the extra company of J1.  It is lovely to not have to get up and have a regimented routine for a little while.  A change always does us good.  But by the end of them, I think everyone is craving that structure again.
 
So here is to crisp, fresh mornings.  To that cosy jumper and warm coat.  To the re-emergence of those faithful old ski socks as the evening turns to night.  To shorter play dates at the park, but the prospect of that silky hot chocolate running down your throat and warming your hands when you get in.
 
So, Welcome Autumn.  We didn't know if you would come. 

Sunday, 7 October 2012

FICTION - Camomile Crescent - The Winterbournes


26 Camomile Crescent – Eleanor and Andrew

Ellen Winterbourne smiled tightly at her cleaner as she passed through her voluminous kitchen.  She had forgotten that she had approved her employees request to change her usual Tuesday and Wednesday visit for Monday and Tuesday this week.  Ellen usually ensured that her schedule meant that she was out of the house on days her cleaner worked at 26 Camomile Crescent;  a large, over extended detached Victorian property that Ellen, her husband Andrew and their two children; son Alastair, 15; and daughter Ianthe, 14 now called home.
Ellen and Andrew - or Drew - as he was more commonly known, had moved to Camomile Crescent in order to get their two children into The Academy.  That is what most people believed, and to be honest, that is what they were more than happy for them to believe.  Ellen shuddered at the mere thought, of the potential humiliation had their friends known the truth. 
As she and her husband had snapped, almost mercilessly, at the heels of an elderly couple to buy the good sized detached property on Camomile Crescent some of her friends had been a little bemused.  Others had seemed envious of their determination.  Her closest friend, Joanna, had confided in her "Things are quite," she paused "unstable at Grahams company."  She shifted uncomfortably "He says he is going to be fine of course, but with Izzy just about to start at Langmouths as well as Rory," she hesitated again, as if calculating whether she could actually say the words all parents with children in private school are scared to utter 'I'm not sure we can afford it' - it appeared she could not.  "It's all such a worry." She finished generically. 
Ellen sipped at her Espresso and knew this was the ideal opportunity to tell Joanna, to get off of her chest the huge secret she and Drew had been harbouring.  But pride, and the promise she and Drew had made, to tell no-one, stopped her.  She cleared her throat and instead began the planned statement she and her husband had agreed on "Well, we are not."  She gently placed the small coffee cup down on it's saucer.  Joanna looked quizzically.
"Not?"  She asked.  Ellen replied with more confidence than she felt at the statement she was about to give.  The statement that she and Drew had discussed for the last few months.  The statement they were trying to get themselves to believe in.
"We're not sending Ianthe to Langmouths, and we are not re-enrolling Alastair."  Ellen was prepared for the look of shock on Joanna's face.
"Are you going to home tutor them?"  She quizzed.
"No, we are buying a property in Camomile Crescent and they will be eligible for The Academy."  She didn't let Joanna interrupt, she needed to get the well woven, fabricated story she and Drew had devised out.  "Drew and I have been discussing, for some time now, that we believe The Academy to be of a better establishment than Langmouths.  I know it sounds crazy, but we feel Langmouths just isn't providing the standard of education for the children as when we attended ourselves.  We have spent a lot of time," she paused, thought and added "and money, having it researched."  They had not, of course, employed anyone to research this.  Ellen had dedicated many hours herself pouring over reviews and reports and believed if read in a certain way, the results could almost convince her that they would be sending them to a better school.  It had the reputation of being a fantastic school, a sought after school, and that was the most important thing.
In reality, this did not matter at all.  They had no option.  They could no longer afford for one child to go to Langmouths, let alone two.  They could no longer afford their luxury eight bedroom, six bathroom country home either.  Life had changed for Ellen and Drew, but they had decided nobody else needed to know that.  The most important thing for them, was that they could afford a home on Camomile Crescent and they could just about afford to make it look like a home suitable for their lifestyle and fool everyone else into believing it was out of choice.  A choice being made for the good of the children, rather than one being forced by the bank.
"But, your home is just...amazing, why would you want to sell it?"  Ellen felt her heart drop, her home was amazing, it was true.  It was everything she had ever dreamt of and it was heart wrenching that she was being forced to leave it.  But she couldn't let Joanna see that.
"With the children older now, it is too remote for them.  It was great whilst they were little, all that space and fresh air but now they are older, they need to be closer to their friends so they can do things more independently.  The new house was just," she rolled her eyes and waved her hand laughing "a steal and you should see the plans we have for it.  It won't be recognisable.  I am quite excited at having a new project."  She blustered.
"Well, Graham was only saying the other day about the potential to make money from properties in that area.  I think he meant more as a buy, renovate and sell - more than actually...living there."  She seemed to choose her words carefully.  "He would never move from The Mews, so I don't think there wouldn't be any point in us looking at somewhere else to live.  But if you think we need to review the suitability of the school?" she looked for confirmation from Ellen who quickly responded.
"Drew and I just believe that Alastair and Ianthe would benefit further from The Academy."  She fumbled with how to reassure Joanna so she did not start researching herself and question Ellen and Drews decision.  "To be completely truthful," Ellen took a deep breath "Alastair has just, never really settled."  This was a lie.  When they had informed Alastair he would be changing schools after just one year at Langmouths he had been far from happy.
"Your withdrawing me?" he had asked with disbelief.

"We're not withdrawing you darling."  Ellen had stipulated.  It was important people did not think they were withdrawing him, that would imply they couldn't afford for him to attend.  They had begged, scrapped and borrowed - even more - to ensure he could actually finish the school year.  "We just do not believe that is the best school for you to be at.  The Academy is far and above 'the' school to be at now.  And that, is the one we are going to get you and Ianthe into." She winked in the hope of it seeming like a wonderful coupe that they had managed to do this.  Alastair was unconvinced but knew better than to argue.  The fact that Ianthe would not even be starting at private school seem to placate him too.  Ianthe had been unfazed when she had been informed and merely shrugged her shoulders.

"At least I won't have to wear that stupid hat."  Ellen was not pleased with the response.  She would have liked Ianthe to have been devastated.  A perfect reaction was to have been a full blown tantrum.  Drew commented on how well it had gone when Ianthe left the room, but Ellen didn't agree.
"Well," Joanna commented "Langmouths is extremely regimented and Alastair doesn't seem particularly suited to that."  Ellen smiled thinly, recoiling at the comment inside, but decided the best thing was to hold her tongue on this occasion.  It was better to say nothing than point out that Alastair had achieved far better results than her son, on the basis that it would thwart her own argument.
This was another sacrifice that Ellen would have to make in order to maintain the Herculean act that the family was putting on.  It was exhausting, pretending nothing had changed when so much had.  Pretending they could afford their affluent lifestyle.  What angered her was none of it was her fault.  They should have been in a wonderfully secure financial position.  Instead they were being forced to downsize their home, potentially harm the childrens education and make other unfortunate cuts, like her beautiful car for instance. 
She would never forgive her Mother for this.  She was still reeling from the day the Last Will and Testament was read out.  Her Mother had declared, as the Executor read out, as her daughter was financially stable she left her estate and contents to the local Dog Rescue centre, with the exception of the antique desk, which she did leave to her daughter.
That whole traumatic episode was a few years ago.  As she and Drew had left the Law Offices in which she felt she had been completely humiliated, Drew had told her that they needed to sit down somewhere to talk.  It was then that he told her, without the expected inheritance they were in deep financial trouble.  It was in a small coffee shop she learnt that they had large and multiple accounts with creditors.  Accounts that every month Drew was just managing to keep at bay, but which he had allowed to develop on the basis that after her Mothers passing they would be in a position to pay off.  Further to this blow, he had also  informed her that his employer would not be rewarding any annual bonuses and that his salary had in fact been frozen as well.
She had stared at Drew blankly, not being able to formulate any comprehension of what this had meant.  He slowly explained to her the extent of their debt and the severe steps they would have to take in order to not lose everything.  They decided, holding hands across the small table that they would change their life discreetly, cleverly and that the most important thing was to keep up appearances.  The creators of The Academy would never know the true appreciation she and her husband felt for the lifeline that was thrown their way by the birth of the much sought after education establishment.
Of course, the property in Camomile Crescent was in no way suitable in it's original condition, and an immediate and large renovation project commenced.  People in the area had thought it very grand, but it was considerably less to renovate the new home than pay the mortgage and upkeep of the old one.  Period properties, although stunning, and although renovated where possible still required huge amounts of money for maintenance.  The Victorian house they purchased, wasn't in the realm of what they had left behind, but with much careful planning and clever cut backs they had done the best they could to make it a house of a suitable nature, and of course under the pretence that they were 'doing it for the children.'
 Ellen entered into the large, front reception room with the beautiful, original feature window and closed the door. The decor was elaborate and looked expensive. Ellen still smiled with pleasure at how well the room had turned out, given the meagre budget she had been allocated by her husband. At first she didn't believe it would be possible to do anything with the room but once she got her creative hat on she had found the sense of achievement actually, overwhelming.  Those who was invited into the room, were always most complimentary.  Ellen usually waved a dismissive hand and said it was all down to the wonderful designer. She omitted to tell them that the designer had been her and not the 'highly overpriced moron' - as her husband called him - that she had once been in a position to retain the services of.   
Ellen set down her bulging Filofax at the heavy mahogany desk that was now the only connection she had to her Father, another fact she could not forgive her Mother for. She ran her hand along it in appreciation of it's beauty.  She remembered the day it had arrived at the family house as a child. With it's intricate carving on the legs she had been a little scared of it, but over the years, seeing her father hunched over it was the thing she remembered most about him.  Some days he would set down his pen and pick her up and tell her far fetched stories about the animals carved into the feet.  She often wondered why he had chosen law as a career path when he was so creative.  As she got older she realised, it was a highly respected career, one his own Father had followed and just as it was for her own family values now, keeping up appearances meant everything.
She wondered if she had not 'kept up appearances' with her Mother for all those years, about how financially stable she and Drew were, it would have made a difference to her Mothers final decision on not giving her the inheritance.  Probably not, she thought coldly.  She had always felt her Mother was jealous of the wonderful, happy and close relationship she had with her Father.  She couldn't control that for all the years he was alive, so she had punished her instead, after he was gone.
Ellen shook her head and took a deep breath as if trying to clear the negativity from her mind.  She had so much organising to do today for the local Hospice Charity Ball she did not want to start the day off on the wrong foot.  She had to find her most charming self to try and negotiate with venues and suppliers.  She already had a good relationship with a lot of acquaintances, but after finally being voted as the Charity Ball president this year, she wanted to make this years one so spectacular no one would want to stand against her in the future for fear of failure.
Thinking of Presidency she made a note for herself that she must ask Ianthe if she had written her campaign plan for her own Class Presidency bid.  She worried a little that she seemed to be dragging her feet on getting herself such positions.  Ellen and Drew had reiterated to her time and time again that she needed to dedicate herself to all these extra things as they would assist her application to University.  She made another note to herself that she must start to look at University choices with Alastair.  They would need to seriously start considering which A-Levels he should undertake, and again she found his apathetic attitude towards this monumental decision somewhat disconcerting too.
She opened the heavy drawer of the desk by the brass handle and pulled out her Rolodex, flipping to V, she perused and started to note down potential, suitable venues for the ball.  

For previous installments of Camomile Crescent please click here.
 
 
 

Friday, 5 October 2012

Special Awareness : I am grateful for...

Special Saturday is now hosted as and when you wish to link up to it now, rather than prompts coming on a Saturday.  Despite this, it's aim remains the same.  To raise awareness of the daily highs and lows of living with a special needs condition within your life.  Whether you are the person with special needs; the parent or carer of someone with special needs; the friend of someone with special needs or just had your life touched (and usually improved) by knowing someone with special needs.

The last prompt given by the administrators was :

I am grateful for ...
 
 
I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

I participate in a weekly blog hop called 'Reasons to be Cheerful' whereby you have the opportunity to share the things that have made you happy in the course of the week.  It is surprising what you can find - even in the crappiest of weeks.

So this is a good opportunity to do the same but on the subject of Special Needs.  Someone with no experience of having Special Needs in their life would probably wonder what on earth could make you happy about it.  So here is what I am grateful for...

* I am grateful, that my son, J1, who was born eight weeks before he should have been is here with us today.  I am grateful that we live in a day and age where science and technology was able to keep him alive in those first tentative days.  We didn't know in the first few weeks or even months that brain damage had occurred.  Everyday I wish it hadn't.  Especially knowing that it occurred in the last hour of the birth.  It's a tough pill to swallow.  We will never know what specifically caused it.  It could be one of many potential factors.  Apparently.  But if the choice was between having him with us, exactly as he is today or not at all I wouldn't change a God damn thing.

* I am grateful that we got a quick diagnosis.  Within weeks of him seeing the right consultant we had it confirmed he had the condition Quadriplegic Cerebral Palsy.  This made getting the right help for him; physiotherapy; occupational therapy; speech and language therapy; hydrotherapy easier.  I will not say easy, because nothing comes easy. But at least with an actual diagnosis, you have a hope in hell. 
 
* I am grateful that J1 can speak.  He didn't start to speak until he was five.  The most important part of this ability, apart from the wonder of here him saying 'Mum' for the first time, is that he can tell us if he is in pain and the generally where the pain is.  This is incredibly important, particularly since he has such problems with his hips. 
 
* I am grateful that despite his huge physical disabilities J1 is a very placid nature.  He does not have any behavioural problems.  Although J1 is physically demanding when it comes to caring for him as he must be hoisted whenever he needs moving; he can not sit unaided; he has to have extensive physiotherapy - he is not a challenging child.  He is very accepting of the fact that he must be hoisted; he must be tightly strapped into equipment; he must have the extensive physiotherapy.  Saying this, as I have mentioned in numerous previous posts, as he is getting older he is developing more sense of awareness of the things he can not do and this is beginning to cause a little frustration for him.  However, on the plus side of this the fact that he is developing the awareness in the first place if fantastic.  It is wonderful that he is becoming socially aware, and hope this means that he can start to join in some after school activities and gain some social independence.
 
* I am grateful for all the wonderful people I have met through J1.  I did not know that so many giving, kind, selfless people existed in the world.  I am always very wary of the fact that there are some awful, evil people in the world that pray on the vulnerable but am also now aware that there are many people out there who have the compassion to care for them as well as I can care for him.
 
* I am grateful that when fate decided that my child would have the special needs that he does, I had the character and strength to know that I would cope.  As a single mother some (brave) people asked if I would give him up for adoption.  They are not people I speak to anymore.  Anyone that would think a Mother would give her child up because they were not able-bodied, or had any kind of special need are not the sort of people that I wish to have in my armoury of friends.  I do not look at J1 and think he is my disabled son.  I look at J1 and think, he is my oldest son.    His disability isn't invisible.  It is there for the world to see, but in the world of my love for him, it doesn't exist at all.
 
If you have a post, comment, thought or anything related to Special Needs that you would like to share, link it with the Special Saturday facebook page and twitter @Specialsat #specialsaturday.
 
I am also linking this post to the Love That Max Special Needs blog hop.


Thursday, 4 October 2012

What Has Made Me Cheerful This Week?

 
Yet another week has sped past in a flurry of school runs, rain and picking up (lots) of puppy poopy.  But a lot of changes have happened in the fast paced week.
 
With the arrival of October, much Halloween discussion has started on Facebook.  Some people have even dared to start discussions on the 'C' word.  In our house we are not allowed to mention the 'C' word until after J1's birthday in November.
 
The heating is scheduled to come on for an hour in the morning and an hour in the evening - just to take the chill off.
 
The 'Winter Warmer' recipes have been cracked out of the cook books in preparation for walking in from the cold to a smell of slow cooked meals to melt in the mouth.
 
Yes, a season has truly changed this week.
 
One thing has stayed the same however.  That is, it's Thursday and time to think about things that have made me cheerful this week.  This is a blog hop with Mummy from The Heart - if you need lifting hop on over and read some other happy and grateful posts.
 
So, what has the last seven days meant for me?
 
* I participated in Race for Life and it was truly inspiring.  I was also very happy with my time!

* J2 and I have been baking this week.  We made fairy cakes from 'Jo Wheatley A Passion From Baking'.  I made the cakes and J2 did the toppings (well a few he lost interest after that) but they were all yummy.  There are many more recipes in this book that just look amazing and I can not wait to try them out.

* The Puppy is settling well.  She is very playful and eating well.  She is getting used to sleeping downstairs.  Now she has had her first set of injections she can go out in the garden - which means less poop hunting indoors.

* A couple of writing opportunities have come to light which is very exciting.

* I purchased my Mumsnet Blogfest ticket and am very excited about seeing Mush Brain Ramblings, The Digital Baby and Older Mum in a Muddle in November for a reunion.  One of my best school friends also said she is hoping to attend, if she does it will be the first time we have seen each other for about ten years.
 
We have quite a busy seven days approaching so hopefully there will be lots to be cheerful about next week too.