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.