sharingYour Stories

Amy

Amy, who was born in 2003, was starved of oxygen for a considerable length of time during her birth, which resulted in catastrophic brain damage. Her life expectancy and prognosis were both dire and although some doctors spoke of the small developmental steps that Amy might make such as recognising her parents, most concentrated on what she would not be able to achieve. Some predictions proved to be accurate such as the fact that Amy would not walk, talk, or have any voluntary movement others were incorrect, for example Amy is not deaf nor is she totally blind. The undisputed fact however was that Amy would have very complex needs and although some professionals had hope, the majority believed Amy incapable of any progress and as her mother I was told to make Amy’s short life as comfortable as possible and not to expect anything in return.

Amy started to attend “school for parents” which was a conductive education school that I could take her along to for a day a week where the focus was on maintaining a good range of movement in her joints. Some of the schooling was quite physical but it was very clear to me that Amy was never going to sit up on her own let alone walk so eventually at the age of 6 Amy started to attend a special needs school where they follow a sensory curriculum. She spent the next 6 years doing art and craft activities and feeling different objects. No attempt to teach reading, writing or maths was made but then Amy had no means of communication and was labelled as having PMLD (Profound and Multiple Learning Difficulties). One education psychologist went so far as to suggest we need not bother doing anything with Amy at all as she would not benefit!

Various speech and language therapists came and went; they tried hand activated switches, Makaton, symbol cards, objects of reference, smells of reference, facially activated switches but all with no success to communicate successfully with Amy. Throughout this time, Amy’s Dad had been convinced that if he blinked whilst looking at Amy, she would repeat back the blink and he started experimenting with differing numbers of blinks and eventually we decided to take two quick blinks in succession as a “yes” and a refusal to blink as a “no”. We stuck rigorously to this whenever we asked Amy a question or gave her a choice and that was the breakthrough. Finally, we were able to communicate with Amy in a meaningful way and we soon discovered she knew what she wanted or needed.

Through establishing a “yes” and “no” response from Amy, it became clear that she could understand what was being said to her and school took a bit more interest in teaching her, but it was repetitive, and Amy had grown to detest arts and crafts. To this day Amy will not engage in any painting, creating or craft activities.

In 2015 an eye gaze trial at school provided some surprising results and slowly attitudes towards Amy changed. A gifted speech and language therapist helped to convince the teachers that Amy knew what was going on and had a lot to say. A speech book for Amy to communicate with via “yes” and “no” answers was introduced in 2017 and I started asking for a more formal approach to Amy’s education because I felt she wanted to learn about the world. School tried but subjects were taught through massage or messy play and were repeated every week for a whole term at a time.

In 2018 Amy & I watched Jonathan’s documentary “My Life – Locked in Boy” on television which had a profound affect on us. Perhaps Amy, and others in her class, were just like Jonathan? I then bought Jonathan’s book and read it aloud to Amy. WOW! Amy is non-verbal and makes very little sound but as we read the book together, she made very loud, clear, intentional sounds whenever she agreed with something such as Jonathan’s dislike of his hand being put in paint and of “special” speak. At the end of the book, I asked Amy if she would like to learn to read and I lost count of how many times she blinked to say YES!!

I approached school to ask if they could start to teach Amy to read but was told that they had no experience of teaching children with complex needs and would not know where to start. I approached speech and language therapists but was told they did not teach literacy only communication. I decided to teach Amy myself and started with Jolly Phonics because that was how Amy’s younger brother had been taught to read at mainstream school. Amy appeared very engaged but due to her disabilities could not make the sounds or perform the actions that were required, a different approach was needed, and a friend suggested trying Read Write Inc.

It is important to note here that the label given to Amy of PMLD was interpreted to mean she had a learning disability, and this was associated with developmental delay however, it is better to refer to Amy as having learning difficulties because it is her ability to access the learning that is the problem not that she is incapable of learning. Just because Amy could not communicate earlier in her life it did not mean she did not want to or that she did not understand, it simply meant that the rest of us had not found the method that she could access to communicate. The same for teaching Amy to read.

Having looked into the Read Write Inc approach, I booked myself and three of Amy’s carers onto one of their courses locally and requested permission from school to send Amy in a little later a couple of mornings a week. Success! Amy started to show she could recognise letters. School continued with the sensory curriculum but gradually allowed Amy more and more time out of the classroom with her carers to work on her reading. It became clear that Amy preferred her lessons with her carers, and I asked if school could start teaching Amy some simple lessons from the National Curriculum. I think they thought I was slightly mad, but they agreed to allow Amy to access the class with autistic pupils a few times a week where she could join in with some comprehension sessions and other lessons. Again, Amy surprised the teachers by answering comprehension questions correctly and appeared to particularly enjoy history lessons. She also loved being surrounded by other children who could interact with her socially. The teachers were all as supportive as they could be without actually teaching Amy to read and it is interesting to note that Amy was the only child with complex needs on this educational journey, the rest of her class continued to have sensory massages, intensive interaction (this used to put both Amy and her carer to sleep) and drama. Amy’s progress with this disjointed approach was consistent but slow.

In 2020 Covid 19 changed the way of life and Amy could no longer attend school. In the first lockdown, very little was provided for Amy’s education at home by school and we eventually formed our own routine trying to incorporate what was available online with some BBC bitesize lessons and then the daily You Tube videos uploaded from Read Write Inc. Summer came and went and still Amy could not attend school. Without formal teaching experience, Amy’s carers were struggling to move forward with Amy’s reading and we decided to finally take matters into our own hands and looked to recruit a teacher to work with Amy at home. That one simple step has been the best outcome of the pandemic for Amy.

Amy started having lessons at home with a teacher for 3 hours a day 4 days a week. The teacher started at the beginning again in terms of literacy and general education in order to assess Amy, recap, fill in missing sections and then move on. She started to teach history, geography, maths, science and religion following the National Curriculum. The result was a happy, alert and engaged Amy who loved her lessons.

After only 8 weeks of home-schooling Amy read her first book ‘My dog Ned’ on her own. Her teacher simply turned the pages with Amy indicating through blinks when she had finished a page. She was then asked a series of questions and she answered them all correctly!

It is saddening to think how bored Amy was at her special school, but I know they cared and did the best that they could following current thinking and guidance. Amy’s literacy journey started a long time ago, there have been many false starts and setbacks, many obstacles put in her path and a great deal of incorrect assumptions made but, without one small step leading to another, we could not have got to where we are now. There is so much more left of this journey as I strongly believe that it is Amy’s dream to be able to eventually spell out the words that she chooses to say and hopefully one day she will have that voice, just like Jonathan.

Every child deserves an education no matter what their perceived obstacle to learning is and it is the job of the educationalists to unlock that potential; but without encouragement, guidance, new thinking, belief and case studies it can be difficult for some professionals to make that leap from the old traditional ways. It is time to change the thinking of the old school experts. The possibilities are endless.

Iona Nunes-Mayo