Children Masking Pain at School: The Hidden Cause of Attendance Issues
Emma,45 years old from Pevensey, Sussex, England
I’m a mum and carer to my two autistic, on pathway ADHD twin boys who are 7 years old with complex health needs hypermobility Ehlers-Danlos syndromes (hEDS) with severe gastrointestinal, bladder and bowel issues.
I also have sons of 19 and 22 years but my eldest is on the pathway for Autism and ADHD. He has recently been diagnosed with (hEDS) and fibromyalgia. His health has deteriorated.
He can’t describe how he is in pain, his face and body shows the pain but he can not vocalise this at all.
Twins at school
My twins had big changes going into school Year 3. I asked for a part time timetable for one twin whose health and gastro issues are so bad he can’t cope with a full week at school. He has a lot of issues with constipation and impaction. The trouble is he struggles to show this to his teachers or just isn’t heard when he does try to communicate his needs. He can’t describe how he is in pain.
He was traumatised by an awful situation at school when unfortunately he was left alone in the toilet whilst staff gathered supplies but my son was in floods of tears, scared, alone and feeling unsafe due to his severe bowel and bladder issues which is linked to hypermobility and he still has to wear a pull up. The school just want them dry, clean and independent whatever the health issues and hypermobility is very unknown or understood so, they think we’re lazy or sometimes worse.
He no longer wants to go to the toilet at school and tries to withhold as much as possible even though he takes more medication daily than an adult. We can’t believe his bowel doesn’t work on all the stimulant and all the softener we have to put into his tiny body 3 times a day. It doesn’t work or it’s so violent and he doesn’t even know what’s happening, his brain doesn’t connect with his gut or bowel and the brain fog is real and the hyperventilating or passing out as in so much pain so he has to be supervised but again school don’t understand this.
Why don’t they listen to us?
Masking pain
When your child has to mask pain at school and use the words 'I'm good' when their bodies show they clearly aren’t GOOD it doesn’t take an expert to realise that child is struggling. The anxiety that ensues from hiding pain is worse.
It’s a vicious cycle all the time – when he has had good weeks he starts to progress with his 2 year behind curriculum but then spends more time at home being doubly medicated or in hospital being further traumatised due to impaction as his body can’t cope. I am asking for psychological support for him is he is so traumatised by it all.
This has such a detrimental effect on his twin brother who also has hEDS diagnosed by our local paediatrician last year (although we know the diagnoses changed) but we can’t seem to get school to put in an occupational therapy referral. I’m told this is the only way for adjustments to be made at school but school say they don’t know what to put in the referral as when he cries in pain with his legs they ignore him and don’t meet his needs at all.
I will finish by saying they have a brand new teacher to the school who hadn’t realised it wasn’t ok to not allow my boys near their water bottles at all times or to go to the toilet at any time! The simplest of needs of a complex health needs children are neglected. My children have been trying to be at school for just over 3 years now but their needs are not being understood or met!
We are so grateful that SEDSConnective believes us and pioneers these connections for us.
If you want to know more about these issues please read the paper
https://www.tandfonline.com/doi/full/10.1080/13575279.2022.2149471 or our easy read version in our blogs.
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