My child has erythromelalgia and attends a secondary school in the UK
She has had several problems as she has raynauds to.
She has to wear sheepskin boots for her raynauds which the school still hasn't excepted despite doctors letters. She constantly has teachers make comments for example
this one teacher walked over and said should you be wearing boots of that artier. she explained its for a medical reason and he snubbed the fact and gave her funny looks then said well how about when you have to get a job what will you wear then? and continued to make remarks. Her reply was well I will deal with it and she walked off. I'm sick of teachers being unaccepting also she hasn't been able to do PE due to both conditions and has the PE teachers making remarks like well you gotta get on with it or wear more clothes. She hasn't done PE in the last 4 years of being there but every lesson the PE teachers argue with her. She has now been removed from the lesson and sat in a room by her self and as the lesson is 2 hours she is sat there for 2 hours doing nothing! What do you suggest I should do with the school as I have been in contact several times.
Gosh, I'm so sorry your daughter is going through this. I am from the US, so I am no expert in UK schools, but this definitely seems wrong. How can they not accept a doctor's letter? Is this a public school? If so, is there an organization you could contact in the UK that could help you and provide some type of intervention? I can't imagine people getting so uptight over what boots she wears. How old is she?
People might just be jerks, and doctor's notes won't change that, but the school should accept the doctor's notes and accommodate your daughter. What is the school nurse like? I was out of gym for a while in school because of a stomach problem, and I used the time as a study hall (I despised gym so I was super excited about it). Hopefully your daughter can at least use the time to get work done.
I had Raynaud's and was accommodated very well by my school. I was on meds for it when I was 11 & 12 that made me dizzy, and my teachers would let me eat in class if I felt light headed. One of my teacher's also had Raynaud's, and one time she took me into her room and had me shake my hands all over to get the blood flowing. The nurse would always be ready with a tepid tub of water if my feet lost circulation and needed to be warmed up--they were all terrific. And I am only in my 20's so this wasn't that long ago!
Also, I just googled "sheepskin boots" and they look a lot like Uggs, which are super popular in the US. People wear them to work. They get jobs. It's not an issue. Sounds like that teacher is jerk.
I think you need to go to the highest authority, in the school and claim harrasment as well as violating your daughters medical privacy and causing emotional damage resulting in her being unable to concentrate on what matters…school! It’s horrible what they are doing to her, unacceptable!!! I’m so sorry you are both going through this, it’s hard enough without the nastiness of others. Good luck!
Her boots are the kensington uggs they are leather and stop her feet getting wet. It is a public school and she is 15 and in her last year but we have had nothing but trouble. They are more interested in her boots then the pupils that are smoking and taking drugs! Here in the UK we don't have school nurses but she does have a student support officer however she hasnt even bothered to read the doctors letters as when I spoke to her she didnt know what each condition was or the symptoms. Which was all stated in the 8 doctors letters i given in the past!
I would try to go to an outside org or the highest level in the school..OR if you feel comfortable, get other parents involved. Do you have a PTO-Parent Teacher Organization? Or something similar? I am so out of the loop on how schools in other countries work. But there is power in numbers, so you might need a few more people on your side.
Hi, I am so sorry to hear about your poor daughter, I have had EM since birth but it really got bad when I was 16 doing my GCSEs and I had to take all my exams with ice blocks wrapped in teat towels under my feet! I was very lucky that the teachers were very sympathetic so I am horrified to hear of such ignorance from the teachers at your daughters school. May I suggest that you gather as much detail as you can from the Raynauds Assoc (www.raynauds.org) such as their leaflets and clinical research papers which I think you can get from their website, and also from the TEA archives on their website, so you can use this when you next visit the school to demonstrate the complicated nature of your daughters conditions. I have both EM and Raynauds so I often have to wear gloves to protect my hands whilst not wearing any socks!! Best of luck to you both, you're in my thoughts and prayers.
As a mother of a child with EM and Reynaud's (who has both EM and Reynaud's, herself), I can totally relate to your frustration. I have pulled all three of my daughters from public school, and am home schooling them. In the beginning it was all "why can't we go to regular school" and a lot of other whinings. But I explained that I'm a better mom when I am not in constant pain. The only way to do that (it seems) is to limit activity so I do not spark an episode of burning (caused by vasodilation after vasoconstriction), try to maintain a steady ambient temperature in the house, try to stay calm and enjoy being alive as much as I can. I also made them consider the school dress codes. I asked them if they really thought we could expect the school to crank up the A/C for one child. Meanwhile, the electric bill would sky-rocket and the other students and faculty/staff would be uncomfortably cold. I am glad that I chose to home school, even though my 3 girls drive me nuts at times. Your child is your top priority. I honestly do not believe that anyone who doesn't have EM or Reynaud's (or both) can understand what we go through.
Thank you for all your comment. I have given leaflets to the school before but it hasn't worked. Today because it friday my daughter had to go sit in a room instead of pe for 2 hours another teacher had a go at her because the room she was supposed to be in was locked so she sat outside. They said she should have been proactive and found some one but the funny thing is the women who had ago at her says she has raynaud's but weres shorts all year! so im not sure how true that is!
Yes, that does sound a bit off from what people with Reynaud's typically prefer. However, I suppose there may be something else going on that has her dressing that way. I don't know. I know I wear flip flops and sandals year-round. Very rarely do I wear closed toed shoes. The burn of the EM feels worse that the pain of the cold. I feel more alive in the cold, so I typically move around more, increasing circulation and then the inevitable happens. I find that, when dealing with people in a school setting - where there are pretty much "blanket rules" and few exceptions - or any other setting that has that type of structure, the authority-type people are almost afraid to consider individual exceptions. My nature is a quiet, sit back and observe, and only protest when it's obvious that an injustice is happening. It sounds to me as though you may be there, or nearly there, when the teachers and coaches are border-lining on disrespect toward your child simply because she wants to avoid being in pain. Plainly put, that's it. The next thing, I suppose, would be to write a letter (and keep a copy for yourself) to the principle of the school. Be as plain, yet specific, in your wording and try not to allow the obvious emotional toll this has taken on you show in the letter. Give 2 or 3 examples of how teachers/coaches have inappropriately dealt with your child's basic needs. Lastly, offer viable alternatives. Of course, the only alternative to the teachers' attitudes would be to educate them on what your child suffers from, and the extent of the pain, and then tell them that they should not mock or belittle anyone else's pain - especially when they cannot possibly know how it feels. If the principle is unwilling to cooperate, or unable to manage his teachers, write a similar letter to the school superintendent (or whoever the next up is in the school system.) Keep copies for your records. I hope you are able to resolve this conflict. Society screams "acceptance" for controversial individuals and groups and yet totally shuns those who are different without choosing to be.
God bless and stay firm,
CC
In pain said:
Thank you for all your comment. I have given leaflets to the school before but it hasn't worked. Today because it friday my daughter had to go sit in a room instead of pe for 2 hours another teacher had a go at her because the room she was supposed to be in was locked so she sat outside. They said she should have been proactive and found some one but the funny thing is the women who had ago at her says she has raynaud's but weres shorts all year! so im not sure how true that is!