Thursday, 17 April 2014
It became obvious to everyone that Ginny would not manage mainstream school when she was nursery age. I am not one of the wealthy people of Harpenden, at the time I lived with my inlaws and it seemed everyone wanted to have a say in what would happen to my little girl. My beautiful little girl with a smile that could melt the Antarctic. At first idea that she would not go to the same school as my husband was not taken well. After all I couldn't really be thing of letting send her to a special school could I? A school filled with all of 'those children' who couldn't manage mainstream?...truth is I never felt more relieved than when I knew she wouldn't have to attend mainstream, the fact that these special schools existed seemed a miracle so I planned viewings and all of my inlaws worries melted away as they saw how well equipped the sld schools really were. Even if they were towns away.
Shortly after securing Ginny a statement of special educational needs, SEN, with our closest named school James was offered a job as far in the northwest of England as he could get so we uprooted and moved 6hours away to Carlisle which seemed at the time not only worlds away in distance but in every aspect. Smokers everywhere, multi room house lets cheaper then studio rentals down south, easygoing slowed speech compared to fast talking London commuters, I suddenly went from being the youngest mum in town to old in comparison and if I hadn't been so gogogo the culture shock would have killed me instantaneously. Ginny transferred to a brilliant school and though finding specialist equivalents to who she saw down South seemed impossible, there was loads of support set up by various charities that we'd never before received.
I made some great friends and fell in love with many things there. This tiny city made a huge impression on me and I often miss it now though I missed Harpenden while I was in Carlisle. The relocation only lasted about a year and a half before we were drawn back to Harpenden and Ginny's little sister did indeed have the chance to attend the same school as her father. It was like we'd never left, friends awaiting and a familiarity I didn't have on my expatriation from America. Even being back with the inlaws wasn't so bad at first, and then the third came along!
We of course had to find a place of our own within our small budget and near enough to school and grandparents. If only such a home existed! Luckily we found a temporary place just before I went into hospital for what turned out to be the last 6weeks of my pregnancy. Then James got a job in the Caribbean! I didn't budge and James was back within 4months instead of the planned year. He then went to the East Midlands before settling comfortably into Lydd on the south coast of Kent and I was very happy the now 3girls of ours and myself had stayed put. We eventually found the place that ticked all of the initial boxes. Ginny is now in her third year at a fantastic specialist school two towns away and has begun calming.
The subtle changes she's made seem massive leaps to our family and the support I receive from James' family invaluable. Simple tasks like walking Melody to her school when Ginny's transport is late or having Evaluisa so I can attend Melody's school play may not seem like much to nan and grandad but they make my being on my own the bulk of the time manageable. That said if James were home his working hours wouldn't be allow him to provide the same support.
If we were in Carlisle I'd have to hire someone to help equivalently, as with anywhere else. Yet here I find myself back in the loop. He's nearly completed his first year in Lydd and wants us to join him. Financially it would be stupid not to but it would also mean sacrifice school wise. With the nature of my husbands work he needs to live within a certain distance of his work but that distance does not contain the schools I'd consider worth leaving what the girls have already. The stress has raised my anxiety through the roof and being away from my usual friend activities due to the Easter holidays has not helped.
Our elephant feeds off that stress. The more I look at postcodes, schools and ofstead reports, the bigger our elephant grows. And all this to eventually have to do it all again. The more I worry the more the stress seeps from my pores into our elephants belly until autism has taken over Ginny's thin little body. She starts to scratch off her skin to try to release him. She tears books so that the sound of the ripping pages will drown home out and she poo smears because she gives up. Though nothing like the incidents used to be they still swell and drop with my moods.
No matter how neutral I try to stay it never helps. Our elephant is incredibly sensitive to the moods of the house and the time away from school only amplifies his abilities. Our lodger shows no mercy at a time I need peace and still holds against me the break I took last month. Luckily Mother Nature is not as cruel and has given us sunshine to calm the Elephant, allowing Ginny happy plays in the garden and family picnics on a daily basis. This lessens the outbursts of our elephant but we still have to keep our eyes peeled for the signs that he is taking over.
To say I'm reluctant to move again would be the understatement of the century. Though we have fabulous schools where we are now, Hertfordshire is rated one of the lowest counties for Autism support and it's taken a very long time to find carers our family love and trust. The friends we have here are more than that, they are family. We wouldn't have managed my difficult pregnancy, the house moves within our town and James working away without them. They understand the gravity of our lodgers presence and do all they can to lend a hand. The children have grown around her and are lovely caring souls who look after Ginny as if she were a younger sibling.
This town has become home and the thought of leaving tears at me worse than leaving Miami did at 19 or our initial move to the United Kingdom December 2008. Of course I miss my husband, and the girls their father but we make better use of his days off now than we did when he worked a commutable distance and I don't think I would never rebuild a similar support system in a lifetime. I can't feel excited about another move, not knowing when the next would come and I dread once again having to enter the postcode lottery, after all it's not just Ginny there is to think of. Melody loves her primary school and her sister's place there is secured while she remains there.
Entering that lottery will have the greatest impact on her as she will only be granted a place at the closest school with a vacancy. Melody has no statement to ensure she will find a place somewhere appropriate and she is an incredibly sensitive child. Of course she won't understand any of the politics behind school placement, she won't understand the distance has grown between her and her grandparents and friends, the only thing she will see is her daddy, and to her that will be more than enough. It's my worry that will grow, my stress the elephant will feed off of and I will be the one who's needs and wants are overlooked.
I'm sure that if we do end up having to move we will eventually be fine but i can already feel the pit of my core hollow out to make space for the anxiety and pain of the first year or so...and then of course once all has settled I can see it all happening again, a vicious cycle that yoyos me back into a violent dance with the animal that lives within my first born. A battle that continues on a daily basis but swells like a tsunami whenever we reenter our lottery of sorts. A concept beyond the understanding of my beautiful little girl which still bares such great power over her well being and progress... And so with just the possibility of uprooting it begins.
Tuesday, 3 December 2013
If you can manage to give at all and would like to help an amazing family of two please check out this just giving link. Annmarie is an amazing single mum to her severely autistic son Brandon. In the last year his mobility has dwindled significantly and looking after him has become more of a challenge than ever but Annmarie would never give up on him, she has a heart of gold and more strength than she realises.
Saturday, 16 November 2013
Tuesday, 15 October 2013
Monday, 26 August 2013
I often look at Melody and know that most of our disputes stem from us being too much alike. Her headstrong, opinionated, bad tempered bossy nature was most definitely inherited and the fortune of wanting for nothing but a big sister she could look up to and play with as oppose to one she will forever have to look after and love despite the hurt she brings with her lack of understanding. Melody was so pleased when Evaluisa was born. She finally had her own little sister and got the right to call herself a big sister by sibling sequence when in truth she was born into the role herself because of Ginny's diagnosis.
People always ask me how I manage on my own with three children of my girls respective ages with Ginny so profoundly affected by her condition and I tend to say I just do. When you have no other choice you just get on with it. Ginny makes me able to deal with her disability but to be honest the reason I manage is Melody. Melody is not yet 4 1/2 but she is my rock. She is my extra set of eyes and ears, responsible for making sure Ginny doesn't do anything she shouldn't whenever I have to cook, clean or get on with any of the additional perks of home life. Home life that wouldn't be possible without Melody.
Your usual four year old has to worry about what shoe goes on what foot or the words to their favourite song but my Mels never knows whether her putting a toy down to run to the loo means coming back to find it in pieces. If only the pieces were just things but to a little girl of four years old those favourite books, puzzles and dolls are so much more and it's pieces of a broken heart find myself trying to mend. Today Melody spent most of the day out with her grandparents. Having lost my eyes and ears for the day there were various casualties and many of those casualties were brand new, most belonging to Melody.
On days like today I feel like my wanting to give Ginny the best quality of life, keeping her home instead of sending her into residential care, means ours quickly depreciates. Picking up the broken pieces of Melody's precious things is worse then losing any of my own. Any frustration or anger I may feel about Ginny reeking havoc on my household and possessions flails in comparison to what I feel for the actions she takes against her sisters who do nothing but love her. Evaluisa at just a year will quickly have follow in Melody's footsteps, lightening her burden but taking on a weight she should never have to carry but one she has been born to. Our entire way of life is shaped by the elephant that sits upon our shoulders. It's a greedy thing that never ceases to want more from us than we have to give and never fills no matter how well it feasts on our misery growing fatter by the second.
Hate is a very strong word. It is a deep and emotional extreme dislike and in this instance and quite often in our case it's directed at our unwated lodger. Mr Elephant couldn't care less and I am often convinced that my hatred fuels his power over our household. The more we suffer the more oblivious it leaves my Ginny and the fear and suffering in her eyes when she is reprimanded for the actions the invisible hands upon her own force her to take part in leave me feeling like the villain of our story. I can't help but wonder if in some way I am, if somehow I brought this all on my family, if something I did brought the lodger in to prey on my children.
We all fear predators and are cautious of who we allow around our loved ones but our Elephant we call autism was stealthy, we never saw him coming but he slipped past us snuck into our home trying his hardest to tear us all apart and ruin us. Everyday he smirks when I lose my temper and relishes in tears shed and cries of frustration. He creeps up on us when all is still in quiet and destroys what he can when he can and my hate for him only grows. He steps between my husband and I and puts irrational fear in the eyes of my little girl as she screams through the nightmares i cant seem to wake from. No matter how safe I try to make my home we can never seem to make it fully autism proof and our lodger find his way in past the locks and safety measures. Today my hate for him is at its peak and I can only hope that tomorrow he'll share in my exhaustion and stay in bed but we'll have to see.