Hi Ceara
I'm Adrienne, mum to a 9 year old girl. Our story is a bit different. My daughter has one to one carers. We moved schools and areas just over a year ago and both schools have been brilliant but it all depends on the head teacher. Both of our heads have been open to listening and learning from the parents which is a fab start. I have friends who have been to SENDIST. All good close friends and I have been told I can share their stories with you. Having said that I'm knackered today sorry. I have been organising a weekend away for as many families with T1 diabetes who want to come. We are off to the Cotswolds. We are all members of the email group Bev told you about. We are a group of parents who have a special bond.
Part of this group of mums, myself included, were the parents who got the government to change the wording on the Change4life campaign and within 5 days of the first advert broadcasting so you can see we don't sit on our backsides. We are very proactive and our big thing is to change schools and make all our children count, Every child matters, infact Every Disabled child matters.
I have a friend whose son had to be removed from school, it was too dangerous for him to stay plus he was bullied by teachers and children alike and ended up being home ed. They went to SENDIST and won the lot. The school apologised. This boy now has a statement ready for secondary in September. Its very hard to get a statement for a child with diabetes. We are going through that ourselves at the moment as it does affect school. My daughter is out of the classroom a lot, with testing and hypos. With hypers you can't concentrate fully anyway so all in all its hard.
Another child had to change schools at the age of 6. The first school was fine for the first year, then slips ups started. They left her locked outside one day by mistake, she was 5, she had to bash on the windows to be let in!!!! Why wasn't someone watching her. Loads of this kids have no hypo awareness especially if they are concentrating on doing something else, like playing. She had to be out of school for 5 odd weeks until the parents found another school. I have this childs story in full and have been told I can let you have it. She goes to another school 2 miles down the road and they can't do enough. It all starts at the head, and how ignorant or helpful they are.
Another single mum and child have just lost at SENDIST which is devastating for the T1 children. Apparently it has been ruled that its ok that no-one at this particular school had to do this 5 year old's finger or pump (injection I think at the time) or make sure he eats, tests, snacks, etc etc. Apparently he can do it all himself at 5 years of age. SENDIST have ruled this. This is appalling. The nurse lied in court and was found to be lying as was the head but they still ruled against this poor mum.
I have loads of these stories.
Its not just schools though, lots of hospitals let them down as well. Our local hospital is absolutely appalling. We are under a London hospital who is one of the top in the UK for paediatric diabetic care. I am trying to change things locally along with others but its hard work. The DSN is rubbish, totally.
I have done a training session on T1 diabetes at my daughter's school on an inset day. I have also been asked by another mother locally and done the same talk at her son's school. I want to do this at all local schools but its getting the word around really.
Anyway so much for me being knackered and quick. I could go on for ages and ages but need to go and eat and sit........
You may be a very handy person for me and my buddies to know. Oh by the way we have a website
www.childrenwithdiabetesuk.org We are called the UK Children with Diabetes Advocacy Group and we now have a name for ourselves in the medical world of diabetes in the UK. We are asked for our opinions now. We work well with JDRF and generally work well with DUK we also do our own thing.
🙂
