In my last post I said that being Seth's parents is a joy and a privilege and that is true..... but it doesn't often feel like that. Certainly recently it has felt more of a burden.
It's an ever decreasing circle. Yes the system provides us with support. But it only gives us the bare minimum it can get away with. 'Austerity' has ensured this. I see diminishing physiotherapy and occupational therapy support at school. At home we receive the mandatory social worker visits; she listens, make notes and leaves. For a year I've told her that we are struggling and need more support with Seth's care needs but they fall on deaf ears. I know that social workers in our county are stretched to breaking point and it's clear that we are left to our devices because we are 'coping'.
Seth needs help with every aspect of his life so there is no let up from when he wakes to when he goes to sleep - and often after that too. After eleven years, that takes a toll. In fact I recently saw a campaign by Scope raising awareness of parents being sent home with their new child born with clear difficulties with absolutely no emotional support. That was us! So not only are you dealing with being new parents but your dealing with the knowledge that something is very wrong with your child...and you are just left to sort it out. Yes, there are the medical appointments which, certainly in our case, left us reeling with increasingly alarming news, but no emotional support whatsoever.
This isn't a moan but a recognition. Back to this past year I've gradually found it more and more difficult to care for Seth without getting angry with him. I've resented my life and what is expected of me. I managed with the support of Craig and my friends (and my lovely dog!) but I think the death of my dad knocked me harder than I had realised as well. The balance tipped and one morning I simply couldn't get out of bed. I've spent all this time telling our social worker we needed help, but because we were still 'coping' nothing was done. I had to break for her to take me seriously. I called her, broke into tears and suddenly she was coming round to discuss 'our package'.
As I recognised my depression, even whilst I was feeling low and tearful, I felt how strong my love for Seth was. And the anti-depressants are working really well. I've been on them for two months now and I feel better than I've felt in a really long time. They've helped me put everything back into perspective. But to get the help Seth needs I have to dwell on all the bad stuff. Getting his Education, Health and Care plan (EHCP) updated ready for moving to secondary school in September I had to ensure that every element of his needs are documented and chase up all the professionals to write a detailed report to meet those needs. Then when he got his school place, I had to complete a mammoth sized set of paperwork again detailing all of Seth's needs. To get the social worker to take me seriously I have to detail how difficult our lives are. It's always dwelling on the burden. And it's an emotional drain.
But in reality, Seth isn't just his disabilities. And in my very low moments when I considered what life would be if we hadn't had a child at all, I realised that I am who I am because of having Seth. It's deepened my love for Craig because I know how amazing he is and made me appreciate the experiences that life brings. And I damn well appreciate every smile, every laugh, every development step and every time Seth looks into my eyes or responds to my presence. That is a privilege.
It's an ever decreasing circle. Yes the system provides us with support. But it only gives us the bare minimum it can get away with. 'Austerity' has ensured this. I see diminishing physiotherapy and occupational therapy support at school. At home we receive the mandatory social worker visits; she listens, make notes and leaves. For a year I've told her that we are struggling and need more support with Seth's care needs but they fall on deaf ears. I know that social workers in our county are stretched to breaking point and it's clear that we are left to our devices because we are 'coping'.
Seth needs help with every aspect of his life so there is no let up from when he wakes to when he goes to sleep - and often after that too. After eleven years, that takes a toll. In fact I recently saw a campaign by Scope raising awareness of parents being sent home with their new child born with clear difficulties with absolutely no emotional support. That was us! So not only are you dealing with being new parents but your dealing with the knowledge that something is very wrong with your child...and you are just left to sort it out. Yes, there are the medical appointments which, certainly in our case, left us reeling with increasingly alarming news, but no emotional support whatsoever.
This isn't a moan but a recognition. Back to this past year I've gradually found it more and more difficult to care for Seth without getting angry with him. I've resented my life and what is expected of me. I managed with the support of Craig and my friends (and my lovely dog!) but I think the death of my dad knocked me harder than I had realised as well. The balance tipped and one morning I simply couldn't get out of bed. I've spent all this time telling our social worker we needed help, but because we were still 'coping' nothing was done. I had to break for her to take me seriously. I called her, broke into tears and suddenly she was coming round to discuss 'our package'.
As I recognised my depression, even whilst I was feeling low and tearful, I felt how strong my love for Seth was. And the anti-depressants are working really well. I've been on them for two months now and I feel better than I've felt in a really long time. They've helped me put everything back into perspective. But to get the help Seth needs I have to dwell on all the bad stuff. Getting his Education, Health and Care plan (EHCP) updated ready for moving to secondary school in September I had to ensure that every element of his needs are documented and chase up all the professionals to write a detailed report to meet those needs. Then when he got his school place, I had to complete a mammoth sized set of paperwork again detailing all of Seth's needs. To get the social worker to take me seriously I have to detail how difficult our lives are. It's always dwelling on the burden. And it's an emotional drain.
But in reality, Seth isn't just his disabilities. And in my very low moments when I considered what life would be if we hadn't had a child at all, I realised that I am who I am because of having Seth. It's deepened my love for Craig because I know how amazing he is and made me appreciate the experiences that life brings. And I damn well appreciate every smile, every laugh, every development step and every time Seth looks into my eyes or responds to my presence. That is a privilege.
