Powerless

Complete nightmare , poor Ginny is going out of her mind, the carer that's been sent out to cover someone's hols is completely out of the depth!! The carer seemed lovely when she came only to do the evening slots for bedtime but unfortunately now that she's been here for longer stretches things are not going well. 

She let's Ginny make a complete mess of a room and leaves it like that, she's told us she can not take Ginny out on walks unless someone can come and collect her if Ginny acts up, she's told us she can't lift Ginny which very specifically was discussed as a requirement with our community manager from her caring agency, she will just sit in Ginny's room with her for hours doing nothing(which if that was okay by us we could just lock her in and turn on her room camera to watch her), and what's more my mom was on the garden with my other two and a toy came crashing out of the window! 

When my mom ran upstairs to see what on earth was going on Ginny was stood without her nappy on on the window sill with her 'carer' doing nothing about the matter or the fact a toy had been thrown out of the window that could have hit my mother or my other two children. Ginny is going out if her mind with frustration because the whole matter of keeping her happy and entertained is not being addressed. This girl is obviously completely out of her depth an the results are making things worse for us because instead of having a child who is happy we have a very angry and distressed one who has not burned off any energy. Something has to be done about this so back on the phone to agency, social services and brokerage I go :( 

All these new people constantly in and out us terribly disruptive, we've counted 11 different carers in and out since my spinal injury. How on Earth is she meant to adjust to new people at that rate?! It's not this agency's fault, they're doing their best to source carers and it's social services having intermittently put in a cheaper alternative instead of looking for the best care coverage for Ginny.

Ah, to be rich and just be able to find someone appropriate to take her out a few hours a day so she can be happy! There are simply not enough Maddys and Lindas in the world to cover the additional shifts and that's with mom still here, on the 3rd she's off to her sisters for two weeks and then what? How on earth will they manage to cover additional hours then?! :( so massively stressed out! This really not what I need right now. I had another bleed after Melody's end of year class picnic and have spent the last two days back on bedrest so I shouldn't even be getting up to have to manage new carers and dictate what needs to be done. 

All I can do is send emails and make phone calls. I feel so useless, so powerless. I'm so used to keeping my girls in tow, happy and healthy with days out on the common, at the park, over in St Albans feeding the ducks and swans or going for walks through the cathedral, or cinema screenings on rainy days. I hate seeing Ginny so distressed. This isn't my Ginny, this isn't the little girl who knows how much she's loved and tolerates her sisters affection, this little girl doesn't understand what or why everything has changed over night. She's suddenly too big for her waterpit but schools not on so she doesn't get in her weekly swim. 

Daddy's hardly ever home as he's not getting usual days off to be able to manage my medical appointments so there's no one to swing her around. Mommy can't carry her or go for nice longs days out, and all our usual camping trips have been cancelled. There're no trips to the seaside or walks along castles she's never visited before. And it's not for just a change for her but for all the girls. Everything is different and is out of my control. I've always managed to keep things normal for the girls during the bulk of my pregnancies but with my slipped/herniated/prolapsed disk there's not much I can do. The last thing I want to do is prolong my recovery and require spinal surgery after Amber Lily is delivered, I count the weeks down excited to meet her but hoping that with her arrival my life can soon go back to normal. That my back settles and we can be the family we were again. That I can be back in control.

What could possibly come next?

I give up! How can anyone manage a child who not only takes advantage of you being unwell to act up but will break into her grandmother's luggage (who is only here to help look after her for the summer)and everything including her clothes etc,destroy hundreds of pounds worth of oil paints, destroy her new room we've worked so hard on, her own clothes and possibly poison herself all because she feels like it and takes no consideration. Have woken up feeling terribly defeated, her elephant has completely defeated me. It's not fair that her 5 yr old sister has to deal with the 2yr old, to keep her safe from her sister's actions while Virginia and her mess are dealt with. It's not fair that anyone has to wake up to such disaster. This morning our unwanted lodger has taken control of Ginny. The elephant has trampled all over our lives and there's nothing left, and I'm unable to do a thing but watch. At my weakest during the two hrs in which my slow release morphine fades before my next 12hrly dose can be administered. I don't know what's left to feel. What happens next? Maybe  J has a point.

Hi everyone just wanted to share my excitement! Ginny will be moving to class 3 come September :D those of you who know us will know she's attended schools for the severely learning disabled from just before 4 and will now be 8 next month. She's unfortunately not passed class 1 until this last year so to have her progressing to class 3 is absolutely massive! Very very proud of her!!... She also recently won first place every sports day race she participated in against all of primary :)

The past won't stay passed

Hours of sorting through files for information needed to be presented as "evidence" of Virginia's condition leaves me feeling like it's all happened all over again. My beautiful baby girl regressing and her biological father's family making my stresses and worries out to be unjustified. After all his dad only had a PhD in psychology and his mom was only a special needs teacher, they obviously knew better than me, I mean they'd met her twice so it definitely stood more then my day in day out caring for her. I was just over exaggerating and I had no reason to ask them what her biological fathers diagnosis was, that wasn't really my business, especially as there was nothing wrong with my daughter. The day I had Virginia's formal diagnosis I felt just as smug as when the 99.998% chance of paternity arrived two years before. I hadn't planned on becoming pregnant just after becoming a legal adult, I hadn't expected to feel as if I couldn't abort a child if the idea had presented itself at an inconvenient time with some one I could never see myself marrying, I sure hadn't planned to find myself ever watching my child disappear within themselves ever, never mind at 20. I'm sure they thought I had it all mapped out, never mind what I was studying, nevermind how hard I'd worked. 

I really did like to make things up didn't I? And now that it all seems so far behind here I am again, not pregnant, not with watching my 18month old disappear or receiving her diagnosis at 2.5yrs, but shifting through paperwork to satisfy the courts of Boulder Colorado. Dredging up bits here and there to formalise child support internationally. Filling in forms about how often Virginia stays with me or her 'father'. How do you put -always from birth, and -never, he killed my mom's goldfish, I'd never trust him with a child, without sounding like an asshole? How do you say yes I expatriated to the United Kingdom but he'd already moved thousands of miles away when she was 6months old so it's not that big of a deal? How do you say it's okay, you'd broken up a couple of weeks after finding out you were pregnant because you never should really have dated? How can you say tactfully say that you had both come out of long term relationships and just ended up together? How can you say that despite it all you have an amicable relationship though he was a complete jerk your entire pregnancy so you'd banned him from the delivery? How do you swear to tell the whole truth and nothing but when just replaying it in your head it's so awful?

I've never stepped foot in Colorado, Ginny's never visited anywhere in the States outside of Florida. She's been all around the United Kingdom, visited France, Spain, Mallorca. She's an American citizen but she's not lived in US since she was 2yrs 4months old, she's not set foot on American soil since her godmother's wedding in over 2yrs. Some judge out there will still preside over her case while I sit on the other end of the phone answering questions I've probably already done so on paper. He/she will decide how much financial assistance her biological father should give. Decide how much her continued care at nearly 8yrs deems. After all she's no longer a baby, she is now a 7yrs 9mons little girl who can not speak, can not feed herself, can not dress herself, can not use the toilet, can not read, can not write, can not attend mainstream school, can not wash her own hands or handle any other self care needs a child her age 'normally' would. She isn't always in control of her actions, she is destructive and has no sense of self preservation or danger.

Now I wait in for a test run call from the court clerk. A wait and have am reminded of everything I've been though and how hard the past 6yrs have been. I remember how patronising it all was. I remember the anger I felt. I remember the stress. I remember how his family didn't tell me he had sensory integration disorder until ages after she was diagnosed and how irrelevant they said it was to Ginny.

I don't know how all these memories aren't meant to bring it all back. I don't know how I'm not meant to feel the frustration and anger. I had passed this. It was all behind me and yet it's here again and there's no way to hide from it. The past has always been there. No smiles or Easter baskets will abade it. It can't be escaped. It's an ugly truth that stares me down when Ginny stims and affirm I was right. It's there when our elephant stampedes through a room, destroying everything in its path and leaving my little girl in tears.

The truth is there when I have to force Ginny to skype her 'family' abroad. She doesn't enjoy it. It frustrates her greatly and ensures she will sleep terribly that night because of having to partake in such a task for the benefit of others. Had she not been autistic maybe she could have enjoyed these sessions. Had she been 'normal' perhaps she'd look forward to them.

Perhaps then the concept of these people being family would sink in. When the concept of what the purpose of those she is in regular contact with can be distressing how is the presence of those who aren't expected to be welcome.

Ginny spent two years in class 1 to allow her time to settle into her new school, after finally moving up one of her class 1 teachers was shortly moved over to class 2 to ease ensure her 'progress' continued.

Progress that of course is gaged to her abilities. Abilities this family has no concept of considering the inappropriate questions such as "has she learned anything new". I write to show people the extent to which this condition can affect the life of those who have this condition and their families but I suppose I use the word family in terms of those who care for the child physically. I can only speculate as to what it's like for those who are not present. I don't know how it would feel to know that making your child see you through an iPad upsets them or that treating them like someone they've known their whole life when you see them in person every year or two drives them to cover themselves in feces. I can guess it's not great but where as we flex and adjust ourselves to make our autistic child's life copable possibly they don't posses this ability. I've said time and time again that Ginny has molded me into the person that I am but it would seem that's not a biological trait of being a parent, it's born from nurture.

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. James is doted on and the apple of his mother’s eye so his parents will do anything for him, including lending me a hand with the kids. 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.

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.

http://www.justgiving.com/annemarie-dawson/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=annemarie-dawson&utm_campaign=pfp-share

Desensitized

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. 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. It’s clear that he doesn’t want it to be a permanent part of his though.

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.