With the diagnosis of autism came the realisation that Ethan’s journey through the education system would be different from his peers. The luxury of making sure you are happy with your local school, hopefully getting the place you want, and then sending your child there for the first time in September, with the biggest worry being will they settle in OK? Will they make friends? Is far from our radar. A process that is stressful for parents of ‘neurotypical’ children is a minefield for parents of children with special needs.
As soon as Ethan was diagnosed we started discussing where he would go to school. I have always believed that a special school would be the best option and we visited the schools local to us. I soon realised that what we thought might be the best option for Ethan may not be what the council agree too. We would have to go through the statement process and see what the panel decides is best for our son!
With this in mind we also visited our local mainstream schools to see what they offer children with special needs. It has been very eye opening and we also discovered that a diagnosis of autism doesn’t mean that your child will be issued with a statement of special educational needs. It is something I believed to come hand in hand with each other, but I have discovered we are one of the lucky ones to be in the process of having a statement issued.
So in September of last year Ethan’s specialist teacher sent in a request for Ethan to be considered for a statement. Forms were sent out and evidence was collected from people that work with Ethan to see if one was required. All of this information was sent to ‘panel’ and thankfully they agreed that Ethan could apply for a statement. We had jumped the first hurdle.
We started the next process of the statement in November. Doctors, nursery workers, Ethan’s specialist teacher, anyone you can think of really, and of course us, had to send in reports detailing all of Ethan’s issues. For us as parents this is a horrible experience, no one wants to point out all the things their child can’t do, but ironically if you don’t, your child won’t get the help they need. We were also interviewed by an educational psychologist. She observed Ethan in his nursery setting and also had an hour long meeting with us. The encounter did upset me a little bit as she told me that Ethan is high functioning and will do well in a mainstream school. Ethan is three, no doctor will commit to if they believe if Ethan is high functioning as he is too young, I felt she should have kept her thoughts to herself as they were never mentioned in her report. I also feel you are pushed towards mainstream education and this was the start. With all the reports collected it was then back in the hands of the panel.
At the end of January we were contacted and informed that Ethan is being issued with a statement and the proposed statement was on the way to us. We were then told we had to sign it to let them know we are happy, or inform them of the reasons of why we aren’t happy.
The panel have decided that Ethan will be awarded 22 hours per week of learning support assistance. This rang alarm bells for me as this means he hasn’t been awarded full one to one support for the whole time he is in his school setting. Full support is roughly 30 hours per week so to me the statement is saying that Ethan will be left to his own devices during break times, lunch times and for a certain time during the day. I can’t leave Ethan alone for one minute when we are in the house let alone outside of it! My biggest concern is also the fact that we have to support Ethan when he is eating and this statement proposes that in school he will be left to his own devices. My son could go all day without food or water.
The fact that the proposed statement also awards Ethan hours of learning support assistance means that they don’t feel he needs to attend a special school and mainstream is where we are heading. I feel the special school would have been named on the proposed statement if they wanted him to go there. I also know that there are very limited spaces in the special school and all of the parents want their children to go there this year. So I have returned to our local mainstream to find out how they would implement this statement.
So am I happy with Ethan’s proposed statement? The answer is NO. I spent two whole weeks reading all of the reports and picking the proposed statement to bits. I wrote a nine page letter detailing my concerns and why I believe Ethan should have full one to one support. It also included why we believe Ethan should attend a special school. I felt like I was back at school writing an assignment, it was draining but no one else will fight for our child and we only get one chance to get his education right.
So my letter is now back with the panel and I will be contacted in due course.
I hate the idea that a panel of people have the final say in my son’s education. It makes me even madder that they have never met my little boy, and if I’m lucky, they have only seen a photo of him. Being the control freak that I used to be this is a hard pill to swallow.
So for now the statement process and our school choice is all in the hands of fate. I just pray that they agree with me that Ethan needs full one to one support because if they don’t they will have one very stressed parent on their hands in September and I will be wanting to live at the school for the hours that Ethan is left to his own devices!
We started the next process of the statement in November. Doctors, nursery workers, Ethan’s specialist teacher, anyone you can think of really, and of course us, had to send in reports detailing all of Ethan’s issues. For us as parents this is a horrible experience, no one wants to point out all the things their child can’t do, but ironically if you don’t, your child won’t get the help they need. We were also interviewed by an educational psychologist. She observed Ethan in his nursery setting and also had an hour long meeting with us. The encounter did upset me a little bit as she told me that Ethan is high functioning and will do well in a mainstream school. Ethan is three, no doctor will commit to if they believe if Ethan is high functioning as he is too young, I felt she should have kept her thoughts to herself as they were never mentioned in her report. I also feel you are pushed towards mainstream education and this was the start. With all the reports collected it was then back in the hands of the panel.
At the end of January we were contacted and informed that Ethan is being issued with a statement and the proposed statement was on the way to us. We were then told we had to sign it to let them know we are happy, or inform them of the reasons of why we aren’t happy.
The panel have decided that Ethan will be awarded 22 hours per week of learning support assistance. This rang alarm bells for me as this means he hasn’t been awarded full one to one support for the whole time he is in his school setting. Full support is roughly 30 hours per week so to me the statement is saying that Ethan will be left to his own devices during break times, lunch times and for a certain time during the day. I can’t leave Ethan alone for one minute when we are in the house let alone outside of it! My biggest concern is also the fact that we have to support Ethan when he is eating and this statement proposes that in school he will be left to his own devices. My son could go all day without food or water.
The fact that the proposed statement also awards Ethan hours of learning support assistance means that they don’t feel he needs to attend a special school and mainstream is where we are heading. I feel the special school would have been named on the proposed statement if they wanted him to go there. I also know that there are very limited spaces in the special school and all of the parents want their children to go there this year. So I have returned to our local mainstream to find out how they would implement this statement.
So am I happy with Ethan’s proposed statement? The answer is NO. I spent two whole weeks reading all of the reports and picking the proposed statement to bits. I wrote a nine page letter detailing my concerns and why I believe Ethan should have full one to one support. It also included why we believe Ethan should attend a special school. I felt like I was back at school writing an assignment, it was draining but no one else will fight for our child and we only get one chance to get his education right.
So my letter is now back with the panel and I will be contacted in due course.
I hate the idea that a panel of people have the final say in my son’s education. It makes me even madder that they have never met my little boy, and if I’m lucky, they have only seen a photo of him. Being the control freak that I used to be this is a hard pill to swallow.
So for now the statement process and our school choice is all in the hands of fate. I just pray that they agree with me that Ethan needs full one to one support because if they don’t they will have one very stressed parent on their hands in September and I will be wanting to live at the school for the hours that Ethan is left to his own devices!
I remember how stressful it was going through that application, and how irritating that it was faceless people who had not met or observed our child who could make those decisions. Sadly that’s still not changed and it’s so wrong in my opinion. You are right to fight, when you feel up to it – getting something you are happy with up front will make things much easier in the long run. Don’t let them wear you down if you can help it – if they’re not moving, and you still want the special school, have you looked at Educational Equality on Facebook? Definitely ask for help if you need it. Good luck x
You are right. It is incredibly difficult on the parents when the power is taken away and given to a group of ppl who don’t know our kids or who don’t care about them as individuals but see them as just a name on a paper. This has been a source of frustration for me with the school system and also with health insurance. I do hope that you eventually get the placement/support you want.
Natty gets the same provision but we were told it doesn’t equal hours, so they make sure someone is always covering during break times. It’s a minefield to be honest this SEN lark.