I wrote this poem during the time my son’s school attendance was poor due to his undiagnosed Ehlers Danlos Syndrome. We had meetings with the Education Welfare Officer, SEN Head, SEN Teacher, pediatric consultant and School Nurse.
It was such a stressful time. My son’s needs were not fully addressed or dealt with, from the school staff. The Consultant did make points to back some of my choices up. It felt like a massive state bullying campaign to put pressure on me to get my son into school. Having experienced my sons symptoms myself- pain and chronic fatigue-. I knew what he was going through. Unfortunately the ‘team’s’ one and only goal was for full-time attendance.
Having been through this experience with my son is why my husband and I chose to Home Educate my daughter when she had difficulties dealing with the school day due to pain, fatigue and dislocations (aged 11-12). She too has Ehlers Danlos Syndrome- acknowledged by our GP, but not diagnosed by a Geneticist. She saw a Geneticist in Year 4, he said she was too young to diagnose, but to come back if her symptoms get worse. We don’t want to get stuck in the outpatients system, as appointments every 6-12 months are stressful. We know what she has and how to deal with it. She can ask for a diagnosis if she wishes when she is older.
Some days it feels as though all we are is a statistic,
A set of digits, a small part of logistics,
Our individual needs don’t seem to count,
For our needs affect the outcome and damage the amount,
Of the figure given as a reward,
By those in nice suits who sit on the board,
Those who ‘help’ us want to be able
To be Number One in the League Tables,
To reach this goal is immersed through their minds,
They label and judge and pretend to be kind,
As they prod and they push us to the very edge,
Placing in-between them and us a huge wedge,
Of being best and at the top to some is a passion,
Which becomes the focus and omits compassion,
And those poor souls who sit at the bottom,
Want to move forward, but are stuck and feel rotten,
They only want the things which they need,
This is not selfish and does not come from greed,
To be looked down upon, seen as demanding,
Only comes from lack of understanding,
To move things forward, to make things alright,
Is everybody working together- imagine the sight!
There would be no pointing, judging or blame,
Everyone would feel balance, not in deep shame,
This is an ideal plan, of working together,
If only it could start and last forever!
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