Home schooling with PoTS and EDS
I have learnt to look at the world as a huge classroom and adapt my thinking to the fact that a building does not define the word ‘education’ where my children are concerned.
We started home-schooling our children before the diagnosis of Ehlers danlos hypermobility type and PoTS was given to both myself and EDS to our children in 2009. It was the fatigue and the teasing that caused us to withdraw our then 7 year old son from primary education to home-school. Little did we know the teasing was caused by the ‘lack of ability’ in the playground, to join in and be a whizz at the activities that boys love such as football and tag.
The frustration our 7 year old would display when he could not complete all the reading on time and his handwriting was sometimes illegible, was wearing us down. We had lost our happy son to frustration and tears at the door each morning as he struggles to tie his laces, carry his book bags and win in the sports races!
Looking at his little body sitting on the doormat I noticed his display of bruises up his shins, thinking he was just clumsy , I denied the thoughts that anything could relate to an illness and put it down to ‘boys will be boys !’
At the time I was also undiagnosed and did not correlate my personal fight with any of my children’s wild and hard to understand symptoms. In 2009 a team at Cambridge University spotted and queried through UCHL London my fight for 15 years. I was told I had ME until Dr Burrows questioned my soft skin and eds and suddenly all the years of chronic fatigue, tachycardia, joint pains, flu like symptoms and blue and mottled hands and feet were reaching a diagnosis.
Then the Precious Prof Grahame diagnosed both EDS 3 and PoTS, it did not take more than a matter of months and all the jigsaw pieces suddenly fit together. The whole truck load of seemingly unrelated symptoms our children had displayed right from birth made complete sense under the banner of this hard diagnosis.
During the first year of home education I tried to do everything just like a school! We had breaks and time to start and finish, even little work stations and star charts. We followed the rule book to the letter and the LEA were impressed with the work and the way I created a school at home! I was doing well, or so I thought! I exhausted myself trying to take care of them and not realising I was fighting a cruel disease and shouldn’t be pushing myself so much!
Our daughter who had started in reception was to be the brunt of further teacher comments on her ‘ lack in some areas ‘ soon stayed at home in our home class room and started to flourish. Our third child has just grown in the setting where there are no bells or timers to set the interest to a minimum and maximum time.
After diagnosis we could see even in our home classroom the children were displaying behaviours I had ignored as ‘bad behaviour ‘ and not considered them to be pain or fatigue driven. So we started to research and suddenly all the lights began to switch on like Blackpool illumination light up night, why had we not seen it! The classroom walls suddenly became blurred with the outside world, the times and scheduled lessons and lunch breaks disappeared like a vapour as I let my self-imposed boundaries fall and listen to the ‘whole child’ not just the cranial mass in between their pretty faces.
We home educate the children and we love it! Many parents feel they can’t or don’t have the ability to teach as a school would. There is a huge amount of support and help out there and a huge amount of home educators! Our children are not excluded from the ‘real world,’ ‘socialised’ or have a lack of opportunities in anyway. They are happy, peaceful children who socialise with all ages in the world’s classroom.
They learn at home where there are no expected levels, restraints on how fast or slow they need to go, where there are no score cards or failing to make the grade because they are having an off day. Where our garden becomes a science lab, and our larder a cookery school. Where the uniform is whatever they feel their skin can handle on that day, where pyjamas and slippers are not just for red nose day. Where tears are handled with dignity and understanding, and it is ok to lie down to do maths. Where slopping desks are normal and not looked on as ‘different’. Where pain is understood, handled, wheat packs are part of the school equipment and physiotherapy is a curriculum subject ;)
Home educating children with hypermobility and PoTS is both a joy and a challenge , but education fits them rather than trying to squeeze them into a box defined education by well-meaning and wonderful people- just ignorant due to lack of understanding of a child with a complex and largely not understood syndromes. As parents, you know your child and the best way to handle their fears, pains and symptoms.
Just last week our son 12 was diagnosed with PoTS and it has been a diagnosis I have watched creep up on him. It is very challenging going through PoTS and EDS and home educating my children. I am blessed with a super special husband that helps me day to day and chips in when things are crazy hard, he works from home making gluten free muffins so we have a great support structure in the house. We all have to be really patient and understanding of each other, all our needs are so different and change with the variability and wax and wane of PoTS and EDS day to day.
As a PoTS sufferer myself, I know and see when their symptoms are effecting them. When we need to stop and rest, fluid up or when their heart rates are too high we need to take a horizontal break. When we have to say it plain and stop!
We don’t have to fight the absences on the register for headaches, tummy pains, legs pains and just fatigue days anymore, we get to schedule around what our bodies are telling us.
Home education keeps you in charge of their daily routines, life, pain and challenges. You have a wonderful opportunity to shape their moment to moment education to fit their fingers, their knees, their muscles, joints, tummies, heads, heart rates and the numerous other challenges these children face. It’s not a matter of cotton wool, or control but a case of taking these courageous little warriors and making their battle fields they face daily, and arranging the giants they face so they can conquer them with prayerfully more smiles than tears and fears. Making them see they can achieve. Actually they are some of the strongest kids on the battle field we call ‘life’
The saying ‘we hold their hands for a little time and their hearts forever‘ is so true.
Just some little hypermobile/ blue coloured Potsy hands need to be held in the home classroom where they are celebrated not condemned.
We adapt our world to make life easier and we stand strong together to raise awareness. It’s a cruel disease, you often ‘Look well,’ not everyone is empathetic or sees the courage these young people have to use.
Thanks for this site it is awesome!
“Raising awareness for EDS and PoTS”