Thursday, 17 April 2014

Post Code Lottery

We've reached that lovely time of year when all parents of school aged children due to start somewhere new receives their placement. Living in Harpenden we don't really 'bad schools' but that won't ease our anxieties as we all have our preferences amongst the oversubscribed great schools in our beautiful town. Many have the option to go private if they are not satisfied with placement and that then frees up spaces for those who do. It's all a part of the joy of living in one of the ten wealthiest towns in the United Kingdom, one way or another we all pay for our kids education as the scales tip for houses near enough to guarantee placement so we can 'start our kid off the right way' and 'open doors' for them early on. It seems to many we send them off to good schools, have them make friends with other well to do children and hopefully watch them grow to be successful adults. Harpenden, however, has no schools for the severely learning disabled so then what happens?

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

Please help Annmarie and Brandon reach their goal...

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


6am in the Pavitt household and we hear crashing and banging downstairs. Melody had insisted on having a sleepover with Ginny downstairs in our living room and we'd made sure to secure it so that there was no way Ginny could access the garden or playroom. We didn't, however, lock the girls into the living room. Big mistake. 

James ran downstairs and found Ginny sat inside of the refrigerator throwing out its shelves and their contents. Calmly he lifted her out and took her up to her bed before returning to our room with a "your turn", I stopped nursing and handed him Isa before heading down to assess the damage. Entering the kitchen I actually thought 'I've woken up to much worse' and shrugged my shoulders. I started to tidy up when I thought 'wait, let me take a few pics to fb later' and after doing so I put everything away, wiped shelves included, and mopped up the single cream that had spilled all over the floor. Melody walked in with a sad look on her face and said "I don't want to be all on my own, where's Ginny", she spotted that I was already cleaning and I said "why don't you go up to daddy and I'll be up soon for a cuddle", she turned and off she went.

I went into the living room, gathered up the bedding and carried it upstairs, I told Ginny that what she did was very naughty and dangerous and then gave her a kiss on the forehead. Melody walked in moaning, she'd been sent to her room for making too much noise and waking the baby. I turned on the bubble machine so they could both relax and have a look at it and went back to bed. Isa saw me and immediately wanted milk. Not much later melody returned to our room, bored with the bubbles, and started to show us a dance she learned at school. James caught a glimpse on the screen of movement though Ginny's bed still looked like she was under her covers, he went to investigate and found her covers bunched up and Ginny on the floor tearing up books. Again I was tagged in to take over.

There wasn't as much damage as it seemed, only one book cover was torn and the rest was just books thrown around so I sat on the floor and uploaded the photos, James must have seen me on the monitor because he came in to see what was going on and tell me he was going to run the bath when he caught a wiff of something. I've had an on going cold and couldn't smell a thing but Ginny was in need of a change. It seemed as if she had been sat in it for while so I began to feel badly, the need to go was probably what woke her in the first place and the destruction that followed probably had to do with not being able to get back to sleep afterwards. 

It made my heart ache to think what it must be like to need someone for all of your care needs and not be able to tell someone you needed help when you did. Many of us worry about that becoming the case in our old age but my daughter's entire life may be this way. It's the case for many but easily forgotten. For Virginias's school we were asked to send the children in dressed in stripes and spots with a donation for children in need, one of our favoured charities, at Melody's school they wore pyjamas. Ginny made cakes at school and I bought five so we could each. This year the rickshaw challenge expanded to all four uk nations with it's riders being young people supported by funding raised by bbc children in need. It's quite a challenge and a very worthwhile cause but as usual though it showcases the disabled it's an event that still requires the more abled disabled person. 

Ginny's after school club receives quite a bit of it's funding from children in need and the school was approached to see if any of its young people would take part in the challenge. Although the bbc has visited the school was quite shocked, it seemed they did not even comprehend the severity of the conditions the children who attend the school. Hearing this from the deputy head at one of the various meetings I have for Ginny really sunk in. They did not realise how much support the children actually needed, how could they? Many of them, though not all, looked completely 'normal' meanwhile there were so many people people who quite clearly looked disabled and could take part, and of course there those who didn't look the part, were disabled but not as severely. It is a world you can not completely understand unless you live with it. I'd love for people to just spend a day with us to see what it's like, like an incredibly unconventional b&b their minds would be opened. It is the reason I write and post photos, it may not give the full effect but it's a glimpse at what our day to day can be like.

Ginny's morning mischief really upset James, sometimes I'm more shocked by the way it hits him then the actual event. Sometimes I wonder how he's not lost his sensitivity to our life but then again as a stay at home mom I am the one who has dealt with everything imaginable under the sun. Not much can shock me with regards to Ginny's actions. There was a time when I'd heave with tears, a time when disgust would lead to nausea, a time when I didn't think I had what it took to be her mom. The person I was seems like a complete stranger. Who was I before becoming her carer? I think of it often and always arrive at the same answer, a child. This is the only adult life I've ever known. I never finished my studies, I never travelled like I'd planned, I never had a career, I never even had time to just be a couple with my husband as we'd met when Virginia was just over a year old. And now, this will be a permanent part of the rest of my life.

Ginny will never grow out her autism. There won't be a tablet she can take that will instantly teach her how to care for herself and make up for all of the milestones we've missed through the years. I will always be her carer and when I can no longer care for her then what? I can't even bare the thought. It's hard enough to imagine she will one day no longer be a child, that she too will enter adolescence and then womanhood, that she will grow old, that she may have to live her entire life inside her head. It breaks my heart to imagine it, my beautiful little girl forever held captive by the elephant that has taken over her life. I pray she will grow to be more in control, that she will fight him and break through the fog, that she'll find a way to be live as independently as possible but who knows, well just have to wait and see.

Tuesday, 15 October 2013

Christmas Magic

Our glorious summer has just come to its end and already Christmas is making an appearance in shops all over the country. There is no doubt that the holidays will soon be upon us but what does that mean? Expenses? Temperature drops?Holiday cheer? Good will to all men? We all remember the magic that surrounded Christmas for us as children and now that we have had the joy of having children of our own we want to ensure the magic is not lost for them; but with the temperature drops come colds, with presents come expense and in the end the cheer only reaches us when we have successfully given our children the Christmas of their dreams.In the stressful march until that day one thing parents can at least look forward to is a better night’s sleep for their little ones as days grow shorter and the sun no longer creeps around the curtains causing confusion. In the Pavitt household the setting sun brings no relief. If our unwanted lodger decides it, not even our daughter’s sleep medication can guarantee our 7yr old will sleep a wink, never mind an entire night.

Our Ginny is one of the estimated 695,000 people in the United Kingdom affected by her hidden lifelong condition. Many under the umbrella of the spectrum will share her sleep issues but not all. What they will all share is difficulty with social communication, difficulty with social interaction, and difficulty with social imagination. Some will live independent lives while others may require a lifetime of specialist support,and for the most part they look just like everyone else around.However, the longer you watch them the more you notice that their normalcy is an optical illusion. It is a cruel trick of nature that makes you work double time to figure out why these beautiful creatures don’t seem to fit in the way you’d expect them to. Their camouflage disguises the different processing system within that makes life in our world an incredibly difficult one for them. These 695,000 all have a lodger of their own, each different from the others but all an elephant of varied proportions with the name of Autism.

Ginny loves Christmas but along with the excitement comes the stress of a set of social rules for how a child “should” behave themselves traditionally during the holidays. My Ginny is a 57/60 on the childhood autism rating scale. She was diagnosed with Classic Autism with severe learning difficulties at 2 1/2yrs and stopped speaking at 18months. She is now 7yrs old and continues to be nonverbal and severely autistic despite the many people who have always stopped to tell me “but she is so beautiful, you wait and see, she will grow out of it”. My frustration with these people used to be immeasurable but with time I’ve come to see how difficult it is to digest the idea of this seemingly “perfect” child having such a “flaw”. After all a 7year old trying to grab all of the presents and sweets at Santa’s grotto is just down to bad parenting, isn’t it? What if it’s not that simple? What if no matter how many times that child is reprimanded the child simply cannot help trying to do so again? What if someone else is pulling the strings and as much as the child would like to keep from committing the act, their puppeteer’s strength istoo much to bare?

Until recently I purely believed it was completely up to lack of understanding, but after reading ‘The Reason I Jump, a translated book written by Naoki Higashidaa severely autistic young man, who describes his inner turmoil in depth Ihave begun to wonder more and more how much any of us really do know about autism. I would give anything to know what is going on behind Virginia’s beautiful eyes. To know just how much she comprehends and why she does the things that she does. What wakes her in the night and what her favourite colour really is. If I could just have her without our elephant’s interference for a day, I would make not of all I could to make sure that when he again took over I was at least doing all that I could for her. I think the hardest part of caring for a child as severely affected by autism is the uncertainty. Nothing can compare to not knowing whether you are doing all you can for your child. Nothing can make you feel more of a failure.

Hearing me speak of Ginny and her condition you would probably assume she is an only child but she is actually the oldest of my three girls even if it is believed she has the least understanding. Melody and Evaluisa are both, as far as anyone can tell so far, neurotypical children. Though I try my hardest to give them each their personal spotlight I often fear they also live in the shadow of our lodger. At only 4years old Melody has a tremendous amount of responsibility. If I step out of a room she must make sure Ginny does not do anythingto hurt herself or anyone else. She also has to live knowing that if she doesn’t securely put away her prized possessions it is quite likely that her sister will destroy themand tounderstand that her sister does not do these things out of maliceMy magnificent Melody is the star of the household and her love for her sister knows no bounds. She is always there to remind me that if she would like a treat, her sister most likely would like the same. She sings Ginny songs when she is upset and prays every night that god look after her sister and help her learn to play properly and speak. She is also a brilliant big sister to her year old Isa and tries to set a good example for her.

During the holiday season I could get lost in a haze and easily stop from setting up things that Ginny could get her hands on and destroy but magnificent Melody saves the day and brings the magic of Christmas with her. Having a child like Ginny, presents are far from conventional. We stuff stockings with tubes of crazy soap and shaving foam and fill gift bags with metres of fabric from the market. We ask for gift experiences like theme park tickets and horse riding lessons and camping trips instead of toys and puzzles. Then again, with two neurotypical children in the mix we cannot forget the importance of “normal” Christmas gifts and activities for them so we attend lights up, pantomimes and Christmas parties that with time Ginny has come to enjoy and seemingly look forwards to. Physical presents, on the other hand, will always be at risk and no matter how well Melody copes with her sister’s condition I watch her heart break a little more every time something is destroyed. During normal times we can easily replace casualties but at Christmas the factor of old Saint Nick to consider. Gifts from Mr. Claus himself are precious.

Now we have to think out of the box by thinking of one. The best gift Ginny has ever gifted Melody was a pink tuck box. It stores all of Melody’s most special things and keeps them safe from our elephant. This Christmas Ginny may need to gift Melody a new one as books and puzzles have recently become a target and it has become harder and harder to hide them to keep them safe. We have been very lucky that though our Ginny is a climber she has not yet taken to scaling Christmas trees. She much rather sit back and watch its beautiful lights while trying to sniff out where mummy has hidden the candy canes over the smell of pine. Besides the frustration Ginny feels over time off school during the holidays Christmastime is probably one of the most manageable times for us because Virginia enjoys it so much. There are many children on the spectrum who find even the uncertainty of not knowing what is behind their wrapped parcels too stressful to cope with but Ginny relishes in the excitement of the different and in her own way sprinkles her own Christmas magic by showing us she is aware of the holiday and how much she does love it by pulling Christmas books out of shelves at church, in book shops, and at home as we approach the season.

Monday, 26 August 2013

Our Elephant Named Autism: Hate

One of those days...Our Elephant Named Autism: Hate: You should never feel that your child is ruining your life. Having a child should be a joyous occasion, their life should fill your days wit...


You should never feel that your child is ruining your life. Having a child should be a joyous occasion, their life should fill your days with warmth, making you proud as they grow into the amazing person you mould them into. As a mother I love all of my children, at times I also hate them. They anger they pry out of you is like nothing you could imagine before them. You know that your are doing everything you can for them and the disappointment from their lack of appreciation and appallingly bad behaviour can shame you into hatred. The hatred never lasts while the shame and disappointment may linger longer than you'd imagined it would. It makes you doubt everything about yourself. Is it your weakness that has caused them to behave in such a manner? Your parenting? Maybe it boils down to breeding? Was it just the genetic combination of your partner and your own DNA that created this tantrum, disrespect or lack of understanding in your offspring? You just don't know but you would do anything in your power to ensure it were something correctable. Could it just boil down to need of better discipline? Could it be as simple as a trip to the naughty step or as worrying as good spank?

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.