Saturday, 26 July 2014

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. We're lucky to get him back two days in a week but someone has to pay the bills. Even if it 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. James was there before Virginia regressed and had the burden of the depression it brought me during the pregnancy with Melody. He was the one up at all hours of the night trying to sooth her back to sleep when she awoke terrified and unable to communicate. He's the one she looks for when cross with me. She is just as much a daddy's girl as her sisters although all of our connections to her are strained because of the severity of her condition.

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 James and 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.

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