Iona is the mother of Amy who, like Jonathan, has complex needs. Iona’s journey of advocating for her daughter to be taught to read, in her special school setting, echoes Jonathan’s experiences of being underestimated. The challenges that Iona has faced in her efforts to have Amy’s ability recognised makes her a perfect ambassador for our charity.

I grew up in Surrey, went to university in Birmingham and now live north of Nottingham. I studied business and became a director of an international marketing company. In August 2003 my daughter was born severely disabled, and life changed forever. I am now a full-time mother, carer, employer of carers for my daughter, case manager, team leader, clinical lead as well as Trustee and Chair of the board for the amazing children’s charity Bamboozle Theatre company who provide tailored theatre for the most severely disabled children in this country and abroad.

My daughter, Amy, was starved of oxygen at birth due to clinical negligence and during her court case was described by experts as one of the most severely disabled children in the country at that time. Due to the severity of her brain damage we had two court cases as she was not expected to survive as long as she has and even during the second case, when Amy was 9 years old, an expert Educational Psychologist suggested my husband and I were wasting our time as Amy could not understand anything. We did not believe her and were devastated by her comments. By 2011 we had discovered that Amy had a very definite “yes” and “no”, it was subtle, but it was there, a quick double blink for yes and a stare with no blinks for no. She could make choices. The world opened up for her and she went on to astound her teachers with her ability to use eye gaze technology. Her ‘yes’ and ‘no’ responses became stronger with a head turn to the right for yes and to the left for no.

In 2018 I watched “Locked in boy” on television. It had a profound effect, we were not fooling ourselves, Amy’s decisions were not accidental! I read Jonathan’s book aloud to Amy and whenever there was text that she agreed with she let out a long sigh as if to say “finally” and at the end when I asked her if she would like to learn to read her answer was unmistakably “yes” – a huge head turn to the right and lots of blinking. When I approached her special needs school about this the response was that they did not know how to teach a child like Amy to read. She was too complex. We received the same response from her speech and language therapist. I set out on a new mission and took a course, along with some of Amy’s carers, to teach reading and writing. School are supportive and allow Amy time to have lessons from her carers in a quiet room and we work at home too. We are still in the process of teaching Amy, it is not fast but she knows all her letters and can read whole words. She has a lot of health issues to deal with which make learning slow, but she has shown us she can learn and she enjoys learning. At school she has started doing comprehension lessons with more able-bodied students and the teachers report that she is doing well in these classes and particularly enjoys history. Amy is hungry for knowledge and I believe she has missed out on years of education, she needs to know, and wants to know, far more than anyone thought her able to understand.

As a society we want mainstream schools to help our children reach their full potential so why shouldn’t we expect the same from special needs schools? Not all disabled children have the same capabilities, but all have a right to be educated. I am proud to be an Ambassador for Teach us Too.