If you have a child with complex needs, whether physical or medical, it can be very difficult to hand them over to someone else take care of. I’m sure that is the case with all children but when your child needs 24/7 care it is a different kind of worry.
I worry about such bizarre things, will they know if he has an itch? What if they forget he doesn’t like mushrooms?
So sending our children to school, sometimes far away from home, and handing them over to other people for 6 hours – or up to 8 or 9 hours if you include school transport, every day is difficult.
But we have to. Our children are entitled to an education, and we know that if we can put our concerns aside they will have the opportunities to thrive.
I know there are things that parents want their schools to know so I asked parents via social media, what they wish their school knew / did / remembered / stopped etc.
The responses gave a real understanding of their frustrations and these were the top five things that came up time and again from parents across the UK.
It will come as no surprise that communication, or rather a lack of, was the main issue parents mentioned.
I rely on the team at William’s incredible school to be his voice because he can’t come home and tell me what he has been doing all day. And even though he can’t verbalise he can certainly vocalise and join in a conversation. He loves to discuss his day and have me talk to him about all the activities he has done and the things he has learnt. So I completely understand why other parents might feel the same frustrations I sometimes do.
Everyone who responded to my requests for information said the same. They wished that there was more, reliable and consistent communication between them and their child’s school. It’s not enough to have a school diary which simply says “she had a good day” or “he ate well” Because what parents really need to know is what their child did during the 6 hours they were away from their Mum, what they learnt, how they reacted, what they ate etc.
Without this information it is impossible to have a ‘conversation’ with a non-verbal child about their day. And how do you provide a balanced diet if you don’t know what someone had for lunch?
One parent told me the most important thing her daughters school need to tell her daily is whether she has had a poo or not so she knows whether to medicate her or not. But 4 out of 5 days they fail to let her know.
I can understand this frustration myself because William will try to tell me if he needs the toilet but without putting his noises into context of his day, it is impossible to know what he is trying to communicate.
My daughters school must think I am telepathic
I wish my son’s school didn’t assume that I know what my son does at school! Without them telling me, I have no idea!
X had a good day, great… doing what?
The teacher ‘forgets’ to write in his diary and it’s really upsetting, you don’t have a clue how his day was without it.
We trust them to tell us what is going on but they often forget
Communication varies from day to day depending on who is in the classroom, it ranges from outlining his whole day to nothing at all – no consistency at all.
There is no such thing as too much information about my child
There were so many comments like this I can’t share them all but you get the general idea, parents want communication and they want it to be reliable, regular and truthful. We all know that the school day is busy and teachers and their assistants are under a lot of pressure but this is one really important aspect of the school day and needs to be prioritised.
Two: I am the expert
Many parents felt like they were sometimes ignored or their opinions were undermined. Whilst this isn’t something I have faced at school, I have certainly encountered it in other settings.
I wish they’d realise I’ve known my son a lot longer than they have! They might be experts in disability but I’m the expert in my child.
Just because you’ve worked with kids like my daughter before, it doesn’t mean you know about my daughter.
Please listen to us, we know our kids better than you do and we want to give you the knowledge to help them learn
It can be really frustrating when people think they know better than you do, about anything. But when it comes to your child, the parents usually are the experts and their opinions and expertise shouldn’t be taken lightly and certainly shouldn’t be ignored.
Three: Staff changes
We all know that staff turnover isn’t something schools can necessarily prevent but changes within classes is something that parents find frustrating. For many children with complex needs, it can take some time for the child to become comfortable with the adults looking after them. And it can take even longer for the adults to know everything they need to know about the child, their medical needs, how they communicate, even how to feed them.
So when staff are moved from class to class throughout the term it can be disruptive to everyone and changes like this cause issues at home as well as in the class room.
For a few days at the start of every school year the teachers don’t seem to know my girl is deaf in one ear
Every term my son has a different person feeding him, but he doesn’t cope with change and so doesn’t eat. Just as he’s got used to them, he is passed to someone else.
Why don’t all the staff in my son’s class know his needs? What is the point in only one person being an expert? What happens when she leaves?
If staff don’t communicate with each other it’s my daughter who suffers.
Parents wish that support staff would hold proper handovers if they are passing the care of a child to another person, especially if they won’t be available if someone has a question.
Four: Stop adjusting equipment
I am lucky, Williams school has specialist engineers on site who know how to adjust his equipment as and when it needs to be altered to keep him comfortable. But most schools don’t have this and parents find it really frustrating when their children’s equipment is adjusted by someone who doesn’t necessarily know what they are doing, or why they are doing it.
Some parents mentioned simple things like head rests being put at the wrong angle or dynamic backs being closed off. But even these can cause big issues as far as the comfort and safety of their children goes.
I keep asking them to take the tray off when he goes on the bus but they forget and he ends up with sores on his elbows from leaning on it for an hour
My son’s chair is constantly being broken by well meaning teachers trying to make adjustments that don’t need to be made
If I tell you to leave dynamic back open, then leave it open.
Every time my sons school adjust his chair, they break it which means he is travelling in a broken chair for weeks before it can be fixed.
Five: School Photos
No matter where you are in the UK, it is likely that if your child is in a mainstream school they will have a yearly school photo taken. They’re usually taken on the one day you forget to brush your kids hair and haven’t ironed their school shirt! You’re then charged a ridiculous amount of money for one in a cardboard mount, and of course you order extras for the grandparents! There’s usually a class photo as well, where one of the kids is looking the other way and another is picking their nose – not sure how many parents purchase those?!
Sadly, most special needs schools don’t take annual photos of their students. This is something that many parents mentioned. I know from experience how upsetting it is that our children get treated so differently from mainstream children in, almost, every walk of life so I can appreciate how this upsets parents.
I would LOVE a school photo of William every year so I could chart the changes in him, and a class photo would be lovely as these are friends he really only sees at school.
I wish my son’s special needs school took school photos, just like his sisters mainstream school do. I hate having a photo of one child but not the other.
Why don’t special needs schools offer these? Is it because the photographers don’t contact the schools? Perhaps we should encourage them to do so.
What do you wish your children’s school knew? Leave a comment below.