Angel's Appeal
September 2008
This is Angel, she’s 10 and for the first time in her life, she’s looking
forward to going back to school...
As our schools are starting a new academic year, please take a moment to read about Angel, the daughter of one of Epilepsy Action’s supporters. Angel’s mum asked us to share her daughter’s story with you to highlight some of the problems that some children with epilepsy will be facing over the coming months.
Last year, Angel changed schools; not because she was moving up to junior school or moved to a different area. She wasn’t a trouble causer and her school wasn’t closing.
The only reason Angel had to change schools is because she has epilepsy.
Angel was diagnosed with absences and partial seizures at four years old. When Angel started junior school, her mum went in to explain about her epilepsy and to make special arrangements because Angel still needed to wear nappies. To her relief, the school was supportive and seemed to want to help. That lasted just a week.
When a classmate found out Angel wore nappies, life at school became very different. Angel was teased and was called a baby, stupid and constantly laughed at. No-one wanted to play with her, so at playtime she would just sit on the bench on her own.
The stress made Angel’s seizures more frequent, causing her to miss school and fall even further behind.Time and time again,Angel’s mum talked to her teachers,but they did nothing and the bullying continued.
One child in particular was very nasty and one day pulled Angel’s hair so hard, her neck was yanked back. It hurt so much she couldn’t turn her head for several days.
One morning, Angel stood at the top of the stairs pleading not to be sent to school. Imagine her mum’s horror as she watched her little girl suddenly throw herself down the stairs – just to make sure she wouldn’t have to go to school that day.
Angel didn’t go back to that school again. Her mum began the process of getting her educational needs assessed and, eventually, Angel got a place at a school that would support her properly. Angel started her new school last year and the difference in her is amazing; she’s happy, confident and has won prizes for the neatest handwriting. Her seizures are less frequent and she no longer needs nappies.
We’re really pleased that Angel is happy now, but the problem is, there will be children with epilepsy who are dreading going back to school this September.
Like Angel, they are facing being bullied, teased and their learning needs overlooked.
There are currently 58,000 children living with epilepsy in the UK. While lots of them will have a happy school life, we need to ensure that all do. With the right help and support, children like Angel can achieve their full potential. No child or young person should have to deal with what Angel has experienced.
We believe the best way to take action is to educate teachers about epilepsy, and since 2005 we have run training courses in over 120 schools to do just that.
But this isn’t enough. We need to reach many more schools, and with your help, we can achieve this much more quickly.
- £5 every month could enable an Accredited Volunteer to deliver our schools
awareness programme in one school - £10 every month could enable a trained helpline expert to offer support and advice
to 10 families about epilepsy and educational issues - £15 every month could pay for a volunteer to be recruited, trained and accredited
to deliver our schools awareness programme
Your help will also make sure we can continue to provide services to support children and parents of children who have epilepsy. From the helpline and web forums, through to individual one-on-one support.
A gift of just £5 every month would make all the difference, but I realise in today’s economic climate things can be difficult and every little counts. Whatever you can afford at this time would help us to help children like Angel.
If this story is familiar to either you or someone you know, our free Epilepsy Helpline on 0808 800 5050 can give advice about all aspects of epilepsy including education issues.
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Epilepsy Action blog
Comments
Hello, I was moved to tears when I read Angel's story. My daughter, Maddie (9 soon) has TLE and has approximately 3-8 seizures a day. She is also incontinent during seizures and therefore wears what we like to call pads, although they are Nappies. We are so fortunate that Maddie's school have been exceptional together with her class mates. I think that this is because from the start of Maddie's seizures at age 5, her first term as year 1, her condition has been explained and discussed openly. All staff have been involved and her condition has been explained to the whole school (she has had partial seizures during assembly which can be rather loud and odd looking). She changes for PE in the girls toilets and they have made many exceptions to make her life easier at the school. They have applied for extra funding and it was granted allowing her 1-1 care for 20 hours a week. I don't even think that Maddie is aware of this as they allow her to just be part of the class. If she has a seizure, she has a little sleep in the staff room and then gets back to work. My heart goes out to Angels parents. It is so hard sending your special child off to school knowing that they are different and knowing how cruel the world can be. It shouldn't be so hard for us to fight for flexibility regarding their eduction, after all they are entitled to it just like many other children with many other conditions.
Although I am Angels nanny and had already read this, reading it again still bought tears to my eyes. Angel is and has always been an extremely brave little girl with a wonderful mother willing to fight for her daughter. It has made me very happy to see how Angel has grown in so many ways and she will always have a special place in my heart.
Epilepsy Action undertake wonderful work - long may it continue.
No child should have to go through what Angel did.
My daughter started nursery school last year and had a fit on her first day. All her classmates and teachers just took it in there stride they are all very understanding. They know its part of Isabels life, she is in mainstream school and has been diagnoised with Severe Myoclonic Epilepsy in infancy. She has tonic clonic, absence and drop fits, her school is excellent and so are all the staff. Isabel is now in reception and will have 1 teacher to look after her and another child who has disabilities. Any child with a disability should have this.
I cant imagine going through what Angels family has been through.
let me tell you something people like this make me cry i may have epilepsy and it may not be goin so great but people like this make me brave there is snothig and i mean nothing that you cant se your mind to and do NEVER and i mean NEVER give up if i can have hopes and dreams anyone can maken them come true is up to you god bless
What a timely appeal. I have logged onto the website particularly because I had been worried about our 6 year old son returning to school after the holidays. He has complex partial seizures which are very subtle and usually only his dad and I can recognise them, but it does mean that he is missing out on things at school and noone realises. We are lucky that the school are supportive, but he is struggling educationally and does not make friends easily. I am never sure whether some of his 'extrentisities' are normal 6 year old behaviour, due to hie epilepsy or side effects of the medication (he is on topiramate). I don't expect anyone to have any answers but it does make sending them out into the big bad world even more worrying, particularly the issue of how he is treated by the other children.
My son and daughter both have epilepsy, my son was 6 1/2 when finally diagnosed but it took from birth! it took til recently to get some real answers he has absences, partial seizures, drop fits, plus a list of learning difficulties and mild form of aspergers. like Angel, he has awlful problems at school and not all his needs are being attended too im pleased you have found her a good school, the fear my son has about school and changing schools makes it hard to try and take that step. But despite the school knowing about my daughter her first day in reception was cut short and she has been taken of the register. if things aren't resolved i will have to put up with my son's aggression and find them both a new school. Angel should never have had to put up with what she did at her old school, i really hope her new school continues in treating her with the respect she deserves. my daughter who's 4 has tonic clonic seizures, drop fits (but without warning so just collaspes) and absences (she is still being investegated tho) all leave her incontinent most of the time, ive tried to avoid nappies during the day but its looking like she will need them espec for school.
I wish Angel every success for now and the future.
Angel's story has also moved me to tears. My own daugher is 4 years old and was diagnosed with Epilepsy in July after a year and a half of seizures. I don't know how things are going to pan out at school and I am very worried, however her teacher is very understanding and keep to learn all about my daughter's condition. I am so sorry that Angel had to deal with such bullying at a young age - it breaks my heart. I am still struggling to come to terms with epilepsy as a parent, and dealing with such trauma on top of it must be awful.
I'm so glad that Angel is now settling in well at her new school, good luck to you in the future Angel, I'm sure you will continue to grow and fulfill your potential.
I have known Angel and her family for a number of years and I have seen seen them all grow and develop as they have learnt to deal with Angel's epilepsy. There have been times that have been so very hard. But they have all amazed and astounded me with the strength and courage they have had to fight against systems which have certainly not always worked with them. I am immensley proud of all that they have achieved, and Angel is such a wonderful girl with so much to look forward to.
I was bought to tears by Angel's story. My daughter was badly bullied due to being incontinent during seizures years ago, & my son tried to kill himself after being badly bullied due to his special needs. I am so pleased Angel is happy now. My daughter passed away fron S.U.D.E.P. November '07 aged 17 years. Take care luv Juliexx
Hi I read this post with interest, it would appear that schools would benefit from training in this area. My son of 7 was diagnosed in his first few months at primary school, although the school head was initially hopeless as time progressed, this slowly diminished. The school accepted the support of the childrens hospital volunteers to educate the staff about epilpesy and the school also held an assembly, using resources from the hospital to explain my sons condition and what to do in the event of a seizure. Educationally like most kids with epilepsy he can have abscences that he calls pauses and this can affect his attention span and concentration, so doesnt always get the whole lesson, he also struggles with hand writing but it intelligent mentally...sometimes the schools just need to see the person and their talents rather than concentrate on the schools success. Hopefully Angel enjoy her new school, we have a yearly battle when my son moves from one year to the next year - made more difficult by a change of head, but as parents we fight for whats right for our kids. Keep it up parents - our kids need us to support and fight for them.
Reading this made me so sad, I have suffered with epilepsy all my life and while I was at school I was regularly bullied. I had tonic clonic seizure and sometimes partial seizures the other kids were very cruel at times usually led by one in particular back then they didn’t do teacher assistants for children with special needs or any form of training for teachers concerning the issue. That was 25 years ago (showing my age) and I had thought this type of thing wasn’t happening like that anymore. I am disgusted to see it is, I am so glad that she is getting the help needed and not suffering the bullying anymore, we should try and stop this sort of thing happening as its terrible in a time when people are suppose to be more understanding
my son was 8 yrs old when he first was diagnosed with epilepsy hes school was unable to cope with he's seizures and didnt see it as something that would continue throughout he's life the general idea so they assumed is he would take tablets and everything would be back to normal unfortunately with him this would not be the case
we were lucky enough to be in an area which has an epileptic nurse specialist who went out to the school on serveral occassions to help train and help the school learn to deal with my sons seizures and educate the school on epilespy and the side affects the different meds have hes seizures varied which included drop seizures in the end things got so bad with he's seizures that we had him moved to a special needs school
again the epilepsy nurse specialist attends regular meetings to train and help the staff deal with my son's seizures
he now attends school every day and stays at school despite having 30-40 seizrues a day he is now learning and is included in every activity they do
i know only too well what difference having someone to educate schools can be life changing my son was one of the lucky ones
The childhood is supposed to be funfilled and loved filled for my 2.5 years old son.Unfortunately its not! He had the siezures two times by now in the span of 6 months.He is on daily medication untill he is 5 years old and I am scared of the side effects. I feel completely helpless to give him a happy childhood due to hectic work schedules and finanical commitments.His dad hardly spends time with the child and with me too.As an adult i feel very lonely in a small family when I don't get care and love from the spouse and as a child I don't know what my son must be going through.When i am at home he is very secured and happy.When i am at office he is forced to go to daycare which he does not like as he is the youngest one there and cant manage to play with older kids, I believe.
He has also seen lots of disturbances at home as an infant.When I demand time for the baby and for the family, his dad starts aruging and erupts into anger.The family is been the last priority for him.
My son luvs his dad a lot and waits for him as we are the only two people in his world . Even for weeks his dad stays away from us he does not call us.I doubt if all these are effecting my child's brain and mental health.
I want to save my son and give him a good life.The only option I have is take a separation from my husband now.
will the separation from his dad effect the kid again?
My husband often asks for separation from me and my son!
Epilepsy can have a drastic effect on the family; socially, financially and life changing. We are parents of a child with Severe Myoclonic Epilepsy of Infancy ( SMEI ) also known as Dravet Syndrome. We have been to hell and back many times over the last 4 years with our Son Riley, not just with coping with the seizures, searching for the best medicine, hospital visits, A&E visits, worries of EEG results and MRI scans. The bad luck seems to always come back and hit you in the face. A couple of months of seizure freedom then bang like its back to square one.
Outside in with the epilepsy there is the care and trust you need with other people who care for your child, especially when we both have to go out to work to pay the bills. Four years ago I earned over £36,000 a year I had to work hard though and did'nt mind. But now I have to work part time to cover the care of my Son and will be lucky to have earned £15000 by April. My partner is a Student Nurse so only brings home a bursary untill qualified. Wev'e managed to dig deep and find a way through this nightmare of unpredictable seizures, Status episodes and find that learning disabilities go with my Son's condition such as ASD, ataxia and continence problems.
This gave us the added challenge of seeking Special Educational Needs Assessments and provision of resourses over the last 12 months which was another battle in itself. Taking on Local Education Authorities and seeking a suitable reception School. We did manage and wev'e got there. Riley now attends a mainstream education placement with Resources for his Epilepsy and needs. He goes into school with other pupils and is supported with speech & language, comprehension and is doing fantastic.
Epilepsy Action gave me loads of information and support during the last 4 years, without which my battles would have been tougher. I urge people to go along to a seminar or conference and meet other people and share your experiences. I am a member and even got my mate to run a Marathon for them last year !
Socially Epilepsy has taken its toll on our lives, we no longer have the confidence to go out to the pub or have a night away together, we have to become individuals socially. Trusting a family member or babysitter is a definite no no. Still we keep chipping away at it and try to be positive. We will beat this and never let Epilepsy get the better of us as a family.
Derek...
I am now 27 years old and have tonic clonic seizures. Although things were different when I was at school ( due to lack of funding etc etc), I am pleased to say I was treated no differently than the other kids and was basically made to 'fit in' with all the other kids, and given help when needed. Angel's story was very moving and I'm so glad that she is now in good school. I left school at 16 as sadly the support for me and my behavioural issues due to medication was wearing thin. However, I now have a full time job and my own family and try to manage my epilepsy as best I can.
I'm sure Angel will have many ups and downs in her life and and this small hurdle with her school will soon be a distant memory. I wish her all the best for the future and I'm sure she will have many great things to look forward to.