We are just a regular family with some extraordinary challenges. Two of our children are diagnosed with autisim and both of them have some very real and complex needs and struggles.

We are now in a position where we have a legal battle over our 12 year old daughters education as she has been unable to attend school for 1 year. While its acknowledged by the education department that my daughter has autisim, sensory processing issues, anxiety, school phobia and seizures they have determind without meeting her since primary 5 ( she is now meant to be in S2) that she is capable of attending not just mainstream school but our councils highest accademic school without provision for her level of disabillity. My daughters transition from primary school to secondary school failed and at this time my daughter faced a real crisis both in her mental health, physical ability and medical health.

The education department stated in a meeting that an ability in primary school indicates her ability for high school.. For anyone who understands autisim this unfortunatley is a common thought and statement, and while not everyone with autisim has the level of difficulties my daughter does, all people on the spectrum have very different needs and this feels like it lacks a full understanding of autisim. Sadly success in one enviroment doesnt mean success in another.

They have seemed to take no advice from CAHMS who have been involved in her care and understand not only her mental heath but also her presentation and communication struggles and sensory overload Leading to her seizures.

We now have to legally provide expert witnesses in areas around clinical psychology and occupational therapy and other expenses that will arise. We also have lawyers fees of which we hope my daughter qualifies for legal aid in her own right. We will be looking at fees inexcess of £5,000. We will very likely have to consider selling our house or get into debt.

My daughter experiences her senses physically so she is in constanst chronic pain, Showers and baths cause her to cry in pain with the sensation on her skin. She is terrified of people, wears her hood up and sunglasses on outside. she is hyper sensitive to light, noise , smell, touch and clothes can be a real struggle with her. She struggles with communication and with her sensory processing issues she will completely shut down. This can then lead to a dissociative seizure where her brain shuts her body down to protect her from the overwhelming sensory input. This seizure results in her being unable to move and has lasted up to 15 hours, generally her seizures cause her paralysis from waist down but it has occured from neck down. These seizures have become more frequent.

My daughter is more than her complex needs though, she is smart beyond her years, sincerely thoughtful and kind. Everything she learns is self taught, the piano is her favourite thing. She is fantastic at art and the cover picture was drawn by her. She writes stories and poems about her struggles and is the most empathetic person i know. She is a fierce advocate of people being respected for their beliefs and their individual right to follow their dreams and passions. She does not discriminate regardless of who you are and shows utter compassion for her fellow travelers ( as she call them ) She is also so polite, grateful and a tad direct.

As some people reading this might understand, services and support are hard to find and can be seriously lacking in areas around education and mental health support. My daughter is not naughty or willful, she is a beautiful girl who at present is completely disabled by her disabillity.

If you read this story and move on please know im very grateful that you looked at it, if this starts a conversation then i will be proud.

If you are able to donate anything at all, even £1.00 i would be so very grateful and it would all go towards our legal battle.

Thanks for reading