Over the Iast couple of weeks I have had different conversations with people about their child’s school.Two families, at totally different schools, (and different schools to all my children), with very different situations. What they had is common was the feelings that their encounters with school had stirred in them. Both had children with needs over and above those of the other children in the class and the unknown scared these two mums, they were emotional and fearful of what the future held.
I think they both spoke to me because they knew I would ‘get it’. Over the last three years ‘school’ and my children’s education has caused me more stress, upset and sleepless nights than managing all of their health conditions. This got me thinking, what is it about dealing with school when your child is not the norm that makes it so stressful for parents?
So why does school cause so much stress? My Top 9 Reasons
#1 Demands on teachers are increasing
#2 Teachers and schools priorities are different to ours
We are very much focused on the needs of our children, we know them better than anyone else and have a handle on what those needs are. But working with school to get anything in place can feel like it takes forever. For example, getting everyone around the same table to agree on a plan, getting evidence from professionals to back up their needs, getting equipment ordered and in place or getting interventions up and running.The demands are increasing on schools from the government because of data and tracking, as children move through the school system I worry that they may be too quick to let our children do less rather than support them to achieve their full potential, to lower the goal posts so to speak. I get the principle, so that they don’t spread themselves too thinly when things with their health may be tough already but the cynic in me wonders who would gain from this. My bright child who is capable of so much more with the correct support and understanding or the schools league tables? I will have to see how this one plays out.The long and short of it is that our focus is solely our child while schools have lots of boxes to tick, but for parents this can be really frustrating.
#3 Staffing in the LA has been cut
Our Local Authority’s education department has significantly decreased in numbers in recent years. While I would like to say that staff have been streamlined as they are so much more efficient at their jobs I do not believe this to be the case. They have had a new system to learn with the introduction of the SEND Code, existing children to change from statements to EHC Plans and schools to support in the process and they also now support young people until they are 25. This has to impact on families.
#4 My children are not ‘the norm’
My children are not even the norm of what schools will see when it comes to health and medical needs. They won’t go down to the medical room at a set time and take their insulin or asthma pump and (as long as everything is done properly) have no symptoms. It doesn’t work like that. They are constantly trying to hold their bodies together. The energy required just to sit still is massive compared to their peers. They hurt, a lot. They hurt from sitting in the same position for any length of time and they hurt when then stand, they hurt when they move too much. They just hurt. Then as they walk they have pain as their joints partially dislocate. Stairs are literally their enemy. They are tired, all the time because their autonomic systems are just not working properly and because the blood pools in their legs away from their brain. They smile, joke and get on with it (well try to) because this is their life and they are doing their best to live but it is this invisibility to others that makes things harder. They sometimes fall asleep in lessons, or on the bus home. Often they come straight through the door and make a bed on the sofa, complete with ice packs or wheat bags, or they go to lie down in bed and don’t get up until the next morning for school, often missing dinner completely. Then they do it all again the next day. They have to pace everything; exercise, rest, get to school, complete home work, manage pain and live. Quite a task for their young years and they manage remarkably well.
#5 Teachers can’t see it
Often illnesses like Ehlers-Danlos syndrome and Charcot Marie Tooth disease are invisible, particularly in children who are just doing their best to be kids. My daughter can be in considerable pain, you can see it written on her face but if you were to ask her if she was OK she would smile and reply ‘fine thanks’. She is learning already to paint on her smile and get on with it. This is great but it doesn’t take away the fact that her pain is real and present. Also, what is seen at school is often not the full picture; the meltdowns because they just can’t cope and have been holding it together all day, the before and after school appointments, the medication, looking after their skin, managing urinary and gastrointestinal problems, the endless OT and physiotherapy, the draw in the kitchen dedicated to heat packs, therobands and putty and the effort that goes into motivating using all that, the lack of social life as all their energy goes on school, waking at night in pain, the list is endless.
#6 Pain affects mood and behaviour in school
My son does the same pretty much, he holds it all together at school, telling very few friends about his illness, pretending to be ‘normal’ only to fall apart at home. This alone is exhausting. There are signs that can be seen however while he is at school that his pain and fatigue are impacting on his day; his lack of concentration, forgetting to put up his hand or calling out, not finding the right words, a disconnect in what he wants to convey with the words he actually records on a page, forgetting his books for lessons, missing the bus because he can’t make it out on time, falling asleep in lessons, fidgeting. At first glance he may look like a demotivated student, who doesn’t care or who may have stayed up playing his computer too late but in reality he went to bed as soon as he got in from school the night before and slept till his alarm went off. He is exhausted just trying to be normal and feels that his body is letting him down. This may make children teary, grumpy, anxious, upset, snappy, or they may zone out. It also impacts their ability to concentrate, follow instructions and learn at school. All of these things may easily be taken as a disinterested child who is not trying their best. Understanding the impact that their condition has on them every day, day in, day out, is a good place to start.
#7 No one knows what to do to help
At school staff are often at a loss as to what they can do to help. My children are bright so don’t fit the typical profile of SEN kids but their disability is such that is can stop them accessing education. Fatigue and pain are barriers to learning but not in the same way that a specific learning difficulty would be like dyslexia. Advice is conflicting depending who you talk to, schools, the LA and independent law/ family advice services all take a different view of where my children ‘fit’ in the whole SEND system and therefore what should be provided and by whom. For example, my daughter attends part time but what about the 20-30% of her education that she misses each year? No one wants to take responsibility for that as 1) she is bright and 2) she attends. Not knowing scares us as parents. Not knowing what the future holds, not knowing what the plan is or how it will work.
#8 Teachers are not experts
The SEND code of practice states that all teachers are teachers of SEN and are responsible for the progress of the children in their class, but they are not medical experts. I know that they must read my children’s paperwork and think ‘Oh my gosh’! I work hard to try to dispel any fears by talking to them at the very start of each academic year about how it looks on a daily basis, we’ve found that it really helps to put it all in perspective for them. However, this is proving so much harder at secondary school with the sheer volume and change of staff each year with email as our main form of communication. However, once the teachers ‘get it’ then it is much easier for them in school, for us as parents and most importantly for our children. Training may also be needed to help staff to meet the needs of our children. My plea to teachers and staff would be if you don’t know, don’t guess, don’t pressume, just ask!
#9 We have to trust teachers and schools
When you leave your child at the school gates you are in effect agreeing to allow the teachers and other staff at the school to act ‘in loco parentis’. We have to trust schools. To trust that they know what to do in an emergency. To know that they have read and understood their records. To listen. To communicate. Trusting others with the most precious thing in your world, particularly when they are unwell is a hard thing to do. I spend most days at home with a knot in my tummy waiting for the telephone to ring because pain or fatigue has got the better of my children, it happens a lot when things aren’t managed.I have encountered a few teachers that thought they knew what is best for my them. For example, ‘Running the cross country is just mind over matter’, when PoTS symptoms such as tachycardia and breathlessness are flaring. ‘Just trust us to do our job’, when my child was having daily meltdowns with pain and fatigue and no plan at school to support them. Or ‘Standing still for 15 minutes won’t make them hurt’, after my child was punished at playtime by standing next to a wall and the teacher couldn’t even remember why they were there in the first place, by home time they couldn’t walk to the car. I could go on! These encounters do not instill me with confidence.However, I have also had amazing teachers for our children that communicate well, listen and read my children’s notes and when they are unsure they ask! While as parents we feel that they are actually worth their weight in gold they feel they are just doing their job, which in fact is what makes them so amazing. When teachers work well for my children I have made a promise to myself to go out of my way to tell them, to celebrate them. You know who you are teachers 😉
How can we make a difference?
So how do we work together? Parents and schools, in harmony, to dispel the fears that parents have when they have children at school with health and medical needs and make the whole process less stressful.I’m a realist, I know that we can’t change the system and magically remove the demands on schools and teachers. However, I do believe that if we should try our best to work together within the constraints of the system we find ourselves in. To focus on the qualities that are needed to make any good relationship work, communication, communication, communication, good old fashioned listening and the ability to work together to find the best solution.
And I hope that I will hear less stories from scared parents and more stories celebrating the good relationships that they have fostered with their children’s schools.
You may also like:
Working With School When Your Child Has Ehlers-Danlos Syndrome (EDS) – 5 TOP TIPS
Supporting Children at School with Ehlers-Danlos syndrome and SEND
Do you have children with needs over and above the rest of the class? (medical or educational). What does your child’s school do that is amazing? Share your positive stories in the comments.
