Star is the third eldest of my children and already she has made it through mainstream school the longest. I do wonder though if it will last as we have worries on a weekly basis.
I cannot fault her school, they do so much to help her and never expect too much from her. Only last week they moved her into a different form room because the one she was in was a little too noisy for her. She has teachers she can go to when she’s not coping and rooms to go to when the classroom is too much for her. There are even places she can go to the bathroom away from the rest of the school children. The teachers understand her needs and she misses certain p.e. classes if necessary.
Star has Autism and Elhers Danlos Syndrome, she also has had major operations and her cervical spine is held together by screws and titanium plates. Star has many extra needs compared to the average twelve year old, but the school helps the best they can. She gets stressed out by noise and crowds, sometimes she cannot handle the dining room and is allowed to sit somewhere quieter to eat. She gets excited about school events, then stressed out when they happen because they are a change of routine.
She has joints that sublux easy which means certain physical activities can cause her pain. And because of her spinal injury she’s not allowed to take part in any contact sport. She gets frequent headaches and has stomach problems which means she often needs medical intervention which the school gives on my permission.
Last year her class went on a residential trip. The place they went to was only around 80 miles away from home and Star really wanted to go. But, we had so many issues with both her health and her maturity at being able to cope. The school talked to us extensively about the trip but in the end we decided not to let her go. The school then offered to take her there and bring her home each day so she wouldn’t miss out on the daytime activities but did not have to deal with the overnight ones. It went so well we decided that she could stay the final night. That didn’t go so well so we know we made the right decision about not letting her stay the whole week. But we are so grateful to the school for being so understanding.
This year the trip is to France for three days and Star really, really wants to go. So much so that she made us pay the deposit straight away. She is a little more mature this year but we still have some issues to work through. The trip is not until June so hopefully we can get those issues sorted, her nurse says it’s possible so we are staying positive. It’s just three days but she won’t be able to come home if she changes her mind. We are going to have many more conversations with the school and with Star before this happens but I really hope that she does get to go, it will be an amazing opportunity for her.
So, it’s sounding good isn’t it. The school is great and Star is relatively happy, most days she comes home smiling. She loves her new class and new form tutor, she feels understood.
However, there is a downside to having a disabled child in a mainstream school that cannot be made better. That’s the expectations of attendance. Your child cannot have poor attendance, it looks bad for the school as they have to ensure that your child is attending regularly and achieving their potential.
Star gets sick a lot, she can’t help it, she has medical issues that make her ill. She has subluxations of her joints which mostly heal quickly by themselves but sometimes result in fractures which need further healing. Most the time all that is needed is a tubigrip bandage, but if fractured then she may need a splint or plaster. This means time off for hospital visits.
Star also has stomach issues which cause sickness on a regular basis. She can’t help it but it means she can’t go into school.
Star also suffers migraines. We are not sure why but they could be related to her neck problem. When I say migraine I mean the type where she cannot hold her head up and the pain makes her sick. But she also suffers really bad headaches.
She gets sent home from school a lot because she is not well, but they expect her back in the next day anyway. Her attendance is low, it’s less than the required 96% minimum that the school strive for. The school are on to us all the time if she is off sick, they make us feel like it’s our fault. It’s not down to our parenting, we have two other children at the same school with 100% attendance for the last half term and only slightly less for the term before (Thanks to chicken pox.)
Last week she was particularly poorly. She was poorly all weekend and no better by Monday so we didn’t send her to school. She was still not well on Tuesday but the school had called us a few times and we decided to send her in on Wednesday in the hope that she would ‘perk up.’ The notion is that if you feel a little unwell then you just get on with things and you’ll feel better than moping around. It works for some, but not for Star. She looked awful when she came home. She didn’t want to go back on Thursday but I sent her in because her attendance was so poor. They sent her home before the end of day.
I understand that education is important in mainstream school.
I understand that attendance is vital for good results from school.
I understand that mainstream schools are under pressure for ensuring good attendance.
I just wish there was more understanding for children with complex medical conditions that find attending school unless well really distressing, and will often get worse not better.
Star has told me that the time spent in school last week was spent with her form teacher and mostly sitting in the back of a lower year’s class lessons. Because she wasn’t well and unable to cope with school. So, even though they got their tick on the register of a child attending school, that child was not actually receiving an appropriate education. This just doesn’t seem right to me.
There is no other school suitable for Star, she’s not ‘disabled enough’ to go to a special school, she has no learning difficulties or permanent physical disability. She would not be accepted, she does not even have an EHCP.
It’s situation that a lot of parents like me find themselves. I consider myself one of the lucky ones because Star’s school is really good for her, but because it’s mainstream they have to comply with the governments standards for attendance. Star will never have adequate attendance because of her conditions. If I send her in unwell, then the school has the extra responsibility of looking after her and she’s still not getting her education. The situation seems ridiculous.
A clever child with autism can achieve well in the appropriate educational environment. A parent can have big expectations as their child gets good grades and goes on to college and university. But even this is no guarantee that they will do well in a work situation, or even be able to cope with work. I’ve seen it first hand and it seems such a waste to see that person seemingly wasting their lives away sitting at home all day.
Is it worth it?
I sometimes wonder if it is, but as a parent I will strive to make Star achieves the best she can. I will trust her school to provide her with an education and I will do my best to make sure she is there as often as possible.
As a disabled person, myself who had the same problems as a child i found sending work home was a good way to make both the school and me happy as even though my attendance wasn’t great my grades stayed acceptable which looked good for them so they backed off a bit! You have probably already tried this but just thought it would be worth suggesting just in case
Thank you for your comment Courtney 🙂 Yes, we have been down that road before. Star even had a home tutor for nearly a year, but that was only made available because she was in a halo and brace after her neck operations. x
Star is such a trooper she copes with so much more than an average 12 year old.
It is so much pressure on you and her for her to have to go to school when she is unwell just to make the school look good in their attendance tables. It is ridiculous. Exceptions should be made for children who have medical conditions like your girl.
Sending hugs to you both x
I wish it was possible for the school to make exceptions, if they are willing to take on children with issues (and this school does, it takes on a lot) then there should be an option available for attendance numbers. x
It sounds as if Star is getting so much out of school, that the pressure of attendance seems absurd. I can see the school is under pressure too, coupled with trying to make so many children fit the same set up. I think Kim is right. There should be exceptions. Sitting in the back of a class of younger children seems of marginal benefit. Especially as the school seems so understanding and did so much to make sure she could join in with the residential trip and changing form. I hope you can work this one out.
It’s crazy isn’t it. But it’s not really down to the school, maybe in the future changes can be made. I did hear something on the prospect of mental health being a reasonable excuse for absence, but I doubt that will be enforced any time soon (if ever.)
I never thought about the attendance problem before when attending mainstream, it’s ridiculous that they aren’t able to make allowances. I hope you’re able to find the best solution for Star so that she can continue to be happy and thrive
What a wee trooper Star is to cope with so much more.There is so much pressure isn’t there? We don’t have a lot of these tests in Scotland and I am glad. Sending you hugs xx
My friends child had CF so misses an awful lot of school often when well as if there are bugs going around she Can’t go in. It’s not around our area but she gets not issues at all, so it would seem this is more down to our Local LEA than anything ☹️
A brilliant post that really does show what can be possible with a brilliant school, but also the challenges that the system still pus in place. I hope France goes wonderfully x
I’m sure I saw somewhere that attendance based on medical needs aren’t classed as real absences? I may be wrong but if I can find where I read it i’ll let you know. Lovely to read all the positives though x
It is ridiculous! The whole system is a joke, and the attendance records is one particular area which really gets me fuming. I know why it’s there, it’s to help manage the challenge from parents and children who don’t want to be at school. But when this is clearly not the case as for you, they shouldn’t be piling extra pressure on you. I feel like the Inside Out character Anger when talking about this!!
I don’t get it either. If a child is doing well in school then attendance really shouldn’t matter. Star is truly a brave girl for attending the mainstream school, getting excited and doing so well. It is of course not easy, but I am sure your understanding gives her the mental support she needs.
Hi Anne, it sounds like you’ve got a good school there for Star. It was something we never managed (not through lack of trying) and my son is that person who sits at home doing nothing much and it breaks my heart…I do feel a mini rant coming on though… One of my big bugbears is the pressure to send children who are unwell to school. What is that all about? I fully understand that children who miss too much will fall behind (they actually get held back a year here if they get too many black marks), but it doesn’t make sense to send a child who has not quite recovered from an illness to school, just to sit in the corner and pick up the next bug going because their immune system is still low. I say let children recover fully and I bet overall attendance records improve.. Rant over (sort of)… I can totally relate to your worries about Star not being ready for a school residential trip. Luckily my son never wanted to go, and if he did I’m not sure we could have let him. Preparation is what I found to be key with Gregs, but that doesn’t always work as the reality is far busier, noisier and unstructured than expected… I hope Star gets to a point when you are happy to let her go, and her school really does sound great, which will be a great worry lifter.