0 comment Wednesday, July 23, 2014 | admin
I have been my son's advocate ever since his health visitor recognised the signs of autism. I've had to convince friends and family members, I've had to petition for statements, and struggle with getting the word autism to even be used on said statements. I've gone round for round with schools who say they've dealt with autism, when in reality they've only dealt with ONE autistic child and therefore they think they've got the whole thing sorted. It's been an uphill battle and, unfortunately, I doubt it's won I can ever say I've truly "won", as there's always something new to deal with.
Sprog has been in two different schools already. In London they attempted mainstream as it seems statements are subject to interpretation. It was a two-week disaster, and he was quickly transferred to their special unit, which proved much better for him and a very good experience.
Upon moving back to Wilts, we toured two different schools, and chose the one sprog is currently in because it wasn't CoE (we're not Christians and we worried that sprog might take the religious lessons much too literally), and because they had a special needs dedicated unit.
That decision has proven to be a considerable mistake on many levels, for many reasons, and we're now in the process to set things right with the help of the autism paediatrics specialist of Wilts - another woman who wears a very special hat, and wears it alone. Her work schedule is completely mad, and she has no proteges or assistants. She's very in touch with autism and with the school system and she tries to bridge the gap, but it's quite clear she's fighting a war armed with nothing but a pointed stick and bloodymindedness as the expectations of many schools is rather appalling. I'm so grateful she's going to be pulling out all the stops for us, though it does also unfortunately reinforce how I've been feeling about the current school in the first place; they're not listening, and that is directly affecting my son. The school is wrong for him, and that's that.
It was she who sat my in-denial ex down and told him pointblank about my son's needs - to be honest I think she was the first person he actually listened to about it. as he certainly didn't want to hear what I had to say. She fought to get autism on my son's statement, and she is not only going to get the rewrite worded properly so sprog will get EXACTLY what he needs, but due to some of the things we've been told by the special needs coordinator at sprog's current school, she's also in agreement sprog would be better off at the CoE school we had visited previously. Therefore she going to try and get sprog a place there. She is going to directly attend the decision board for our son's case (even with her mad workload) and if she doesn't attend that one, she will be attending the quarterly assessment meeting so she will be sure to be there and be on our side to get him sorted. There will be more work with occupational therapy, more work on getting the school what it needs and more work to get them to realise that they might have dealt with special needs, but when it comes to autism they have a LOT of ground to cover. Even if sprog doesn't stay there, it will hopefully benefit other children who will need the help...and there are many.
I think she was very pleasantly surprised to see ex had turned up at my behest to be at the meeting and give support; this made a huge change from the last time she spoke to him! She also saw sprog briefly and gasped in surprise at how tall he was. Most of all, I think she was rather encouraged that we are as involved as we are in sprog's education and in trying to sort things out. "Most children, if their parents aren't involved as much as you are, just flounder and never recover." I can believe it...but I'll never allow it to happen to mine. This is why I am home and available for telephone calls, meetings, and conferences. I have no employers to try and convince that I need time off when my son has a meltdown, or when I'm late because sprog didn't get dressed without assistance, or I'm dragging exhausted as he got up at 12, then 2, then 3...
However, it's exceedingly depressing how poorly prepared most schools are for autistic children; true, there's a lack of funding (and when I say 'lack' I mean by -�5million and rising for many counties). But there's just a glaring lack of being informed as well. I don't quite understand why; there are courses, and the internet, and while there may be other children in the school, if a child is struggling, wouldn't one put the extra effort in? Some of the expectations for our son are so completely impossible for an autistic child that it baffles the mind - the professional's stared at us in shock at some of the things we'd been told by the coordinator. It's a delicate business as I know she has to work with schools and coordinators on a daily basis, and I'm sure sometimes she'd just rather strangle them.
The simple truth is most parents know more about autism than the mainstream schools, even than their units. I spent a lot of time teaching the current unit how to do their jobs, and it is something I continue to do. I will not lie; it's exhausting as even when sprog isn't here I spend a lot of time wondering if he's having a good day, or if something is going to crop up and I'm going to get a phonecall. There is no peace, no armistice, no sense of "Now, it's over and we can settle and breathe a sigh of relief." Maybe we'll get there eventually, but for now I'll just gird the loins for battle with the few bloodyminded people who are equally intent of just trying to clear the way a bit for our children, and those coming after us.
A pity more women aren't knighted in this country and I certainly know a candidate or two. I'd certainly put S. up for being a Dame, several medals of honour, a visit to the Queen and - for something completely practical - a very blissful, quiet, and satisfying retirement.
Sprog has been in two different schools already. In London they attempted mainstream as it seems statements are subject to interpretation. It was a two-week disaster, and he was quickly transferred to their special unit, which proved much better for him and a very good experience.
Upon moving back to Wilts, we toured two different schools, and chose the one sprog is currently in because it wasn't CoE (we're not Christians and we worried that sprog might take the religious lessons much too literally), and because they had a special needs dedicated unit.
That decision has proven to be a considerable mistake on many levels, for many reasons, and we're now in the process to set things right with the help of the autism paediatrics specialist of Wilts - another woman who wears a very special hat, and wears it alone. Her work schedule is completely mad, and she has no proteges or assistants. She's very in touch with autism and with the school system and she tries to bridge the gap, but it's quite clear she's fighting a war armed with nothing but a pointed stick and bloodymindedness as the expectations of many schools is rather appalling. I'm so grateful she's going to be pulling out all the stops for us, though it does also unfortunately reinforce how I've been feeling about the current school in the first place; they're not listening, and that is directly affecting my son. The school is wrong for him, and that's that.
It was she who sat my in-denial ex down and told him pointblank about my son's needs - to be honest I think she was the first person he actually listened to about it. as he certainly didn't want to hear what I had to say. She fought to get autism on my son's statement, and she is not only going to get the rewrite worded properly so sprog will get EXACTLY what he needs, but due to some of the things we've been told by the special needs coordinator at sprog's current school, she's also in agreement sprog would be better off at the CoE school we had visited previously. Therefore she going to try and get sprog a place there. She is going to directly attend the decision board for our son's case (even with her mad workload) and if she doesn't attend that one, she will be attending the quarterly assessment meeting so she will be sure to be there and be on our side to get him sorted. There will be more work with occupational therapy, more work on getting the school what it needs and more work to get them to realise that they might have dealt with special needs, but when it comes to autism they have a LOT of ground to cover. Even if sprog doesn't stay there, it will hopefully benefit other children who will need the help...and there are many.
I think she was very pleasantly surprised to see ex had turned up at my behest to be at the meeting and give support; this made a huge change from the last time she spoke to him! She also saw sprog briefly and gasped in surprise at how tall he was. Most of all, I think she was rather encouraged that we are as involved as we are in sprog's education and in trying to sort things out. "Most children, if their parents aren't involved as much as you are, just flounder and never recover." I can believe it...but I'll never allow it to happen to mine. This is why I am home and available for telephone calls, meetings, and conferences. I have no employers to try and convince that I need time off when my son has a meltdown, or when I'm late because sprog didn't get dressed without assistance, or I'm dragging exhausted as he got up at 12, then 2, then 3...
However, it's exceedingly depressing how poorly prepared most schools are for autistic children; true, there's a lack of funding (and when I say 'lack' I mean by -�5million and rising for many counties). But there's just a glaring lack of being informed as well. I don't quite understand why; there are courses, and the internet, and while there may be other children in the school, if a child is struggling, wouldn't one put the extra effort in? Some of the expectations for our son are so completely impossible for an autistic child that it baffles the mind - the professional's stared at us in shock at some of the things we'd been told by the coordinator. It's a delicate business as I know she has to work with schools and coordinators on a daily basis, and I'm sure sometimes she'd just rather strangle them.
The simple truth is most parents know more about autism than the mainstream schools, even than their units. I spent a lot of time teaching the current unit how to do their jobs, and it is something I continue to do. I will not lie; it's exhausting as even when sprog isn't here I spend a lot of time wondering if he's having a good day, or if something is going to crop up and I'm going to get a phonecall. There is no peace, no armistice, no sense of "Now, it's over and we can settle and breathe a sigh of relief." Maybe we'll get there eventually, but for now I'll just gird the loins for battle with the few bloodyminded people who are equally intent of just trying to clear the way a bit for our children, and those coming after us.
A pity more women aren't knighted in this country and I certainly know a candidate or two. I'd certainly put S. up for being a Dame, several medals of honour, a visit to the Queen and - for something completely practical - a very blissful, quiet, and satisfying retirement.
Labels: Sprog