Air Pentalum Exhibit in Milton Keynes

If you don't have any plans for tomorrow after church and can get over to Milton Keynes, why not check out the last day of the exhibit while it's here? Google Air Pentalum for details, directions and ticket info.

I was so pleased to hear Ginny really enjoyed her sensory experience there and wish I could have made it with all my girls! I would have loved to see her having such a lovely happy day after all the stress of the last week and very thankful a good friend, Georgina, posted it's details, Maddy, and that Ginny's usual Saturday carer and my mom were able to take her.

2-1 vs my 1-3(soon to be 4)

Apparently it will soon be deemed that Virginia requires 2-1 care so whenever support is put in there will be two carers in to do the job I (and millions of other parents) have to do on my own with not only Ginny but my other children. What about the many families who receive no support? What about the time those who do do not have the carers around and are expected to do the job of many? What about the families in countries where autism isn't seen as a real condition?

How is it fair, not just the ratio but how little we as parental carers are deemed worth? We don't get raises. We don't get vacations. We work around the clock, day and night, rain or sunshine, weekday, weekend and holidays. Every family vacation we still have our disabled child to mind, every time we go away on our own some other member of family takes on the responsibility. Unless the child is an only one and neither parent works there is no 2-1 ratio and in those cases the parents and family's are viewed as leeches on society.

Getting more support while I'm unwell is plus for Ginny but a major knock for me. It's a display of the reality of my life as Ginny's sole full time carer. It's also not as if these people will be in full time while I am unwell so what does it say about how much my health matters? What does it say about how I'm meant to recover from my spinal injury? 

It's not even as if Ginny is an only child, she's one of three(soon to be four) and my husband lives away for work. Which often means having to miss out on parents evenings, first steps, class plays and family camping trips with friends. All outings with friends for that matter. It means keeping our family separate for the girls scholastic stability and my husbands career, living what should have been a normal family but is at most times more like that of a divorced family. 

The only difference is love. Our children know that we love them and that we love each other. They know that as soon as it is practical for us all to live together we will. That it needs to be the right job, the right area, the right schools, the right house, the right garden, the right amount of recognised autism support before we can move. They are so young and still they understand why our family is different from those of their friends and they know we probably use the time we get to do more than most.

As many of you know a short while ago I was dealing with an international child support case for Virginia. My ex's family tried saying surely I could still manage at least part time work on top of caring for Ginny! Though the court ruled in my favour I would love to have this tidbit to rub in their smug faces now, then. These, the same people who insisted I was making a big deal out of nothing and that there was nothing wrong with Ginny. That I was just incompetent and inexperienced. These people who have in 8years only been in Virginia's company for what would amount to a handful of days if the hours were counted.

I have no concrete dissension with Ginny's biological father. We'd seperated while I was still expecting her, he'd visit her once a week for the first 6months of her life and then moved back to his home state. My husband and I met when Virginia was 15months old, we were engaged in 2.5months and he moved in with us a month later and we were married two years after we first became an item. There is no dispute as to who has played the fatherly role even if rarely at home.

Had Ginny not been disabled, and to the extent to which she is, the circumstances would have been explained to the children; but as it is Ginny's connection with her sisters is of the upmost importance. After all I will not live forever and her sisters will need to check in on her often and make sure she is well cared for when we are gone. Having more siblings than one will hopefully spread the weight of this born into expectance. They are already growing up more compassionate and caring then most children their ages(5,2) and I try to tell myself that at least this is an advantage to being born young carers, a title I never wanted placed upon them but that is completely unavoidable. Luckily they'll be 3-1.

Another Evening with Our Elephant

Sooo today we a senior care worker from our agency sent out and the carer did quite well. Ginny was happy and well looked after, fed, bathed and dressed for bed. However she didn't think she needed to stay in Ginny's room after putting her to bed and went to do paperwork or something... 

The first time she checked on Ginny she was holding a plank of supporting wood she'd pulled out from under her loft bed! 

The second time Ginny had slid out of the top slit window and was on the top of the playroom roof contemplating on how to get down and ready to start attempts! 

The window hadn't been checked to make sure it was on the latch lock, she hadn't thought to check and with it being such apart of my day to day I honestly didn't think to ask her to run safety checks.

I had just been glad Ginny hadn't spent the time all stressed out so that was totally my bad, people can't be expected to think as much about these kind of things when they're not used to them even if it seems commonsense.

In short who knows if we'll see her again because she's probably had the fright of her life but if we do I'm sure she'll be super carful and alert to any possible safety risks and I do hope we do because besides the bedtime routine she managed entertaining Ginny very well and didn't leave a mess.

That said I have completely over done things and am very sore everywhere. Having to pull Ginny back through the window as my mom handed her back up is probably not recommended for women with high risk pregnancies and a herniated disk. 

Thank god mom was there, if not it would have been me jumping out the window and pushing her up and into the window. Also very thankful for our neighbour two doors down for bringing over a ladder to get mom down.

Tonight is going to be horrible. Ginny is calm and playing on my iPad in her bed(I've also reset the beam) and poor Melody was so frightened by the ordeal she begged to have a sleep over in Ginny's room so that she could look after her. I feel again so lucky to have such a wonderful caring child. 

That unfortunately will not help my pain levels so I can't expect sleep, even if up at my full medication allowance and I only hope the strain doesn't land me back in a&e tonight or tomorrow. I'm just glad Ginny is okay, as usual her elephant has tried to lead her astray but someone up there is looking after her.

Around the time of her diagnosis

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 :)