Thursday, 21 February 2013

Emily, her iPad, and how to prove the professionals wrong

Using an iPad, Emily is learning to write - and speak - after being "written off".  Diagnosed with autism at age two, her parents were told that she would never read, write, or focus.

Luckily the professionals are often wrong.

This is her story in her Mum's words:

On a beautiful sunny day on 13th August 1997, Emily was born and my world was complete. After a lengthy and emotional IVF journey, Emily was here and she was perfect. 

Emily developed textbook style over the next year and by her 1st birthday, she was walking and had started to say a few words. She slept well and was happy. Friends would say that she was a joy to have around, because she was so ‘easy’. Little did I know these same ‘friends’ would disappear into the woodwork just a few months later. 

One day, when Emily was about 15 months old, I went into her bedroom to get her up and instead of standing at the edge of the cot with her arms out, she was sitting with her back to me, and did not react to me entering the room. The only way I can describe Emily over the next 6 months is, it was like she had a dimmer switch on her and week by week, some unseen force was turning it down, just a little, until ‘she was gone’. My beautiful daughter now did not need anyone. She looked at no-one, she reacted to no-one and she seemed to want nothing. She would sit for hours behind the sofa in our lounge, just gazing and the words she had been using, disappeared! 

I was frantic – I tried everything to engage her, but I could run into the room, jump in the air, shout, laugh, sing, cuddle her – nothing worked and she remained switched off and locked in her own world! Over the next few months, things went from bad to worse. Emily stopped sleeping and just screamed. Ordinary, everyday activities became impossible. Emily would not eat, she was difficult to dress because she kicked and screamed, and the biting and scratching ….. I cannot even begin to explain what I felt when Emily bit and scratched me and pulled my hair ….. I honestly thought she hated me! She would literally bare her teeth and run at me – she was 2 years old! 

I would spend my day watching her line things up and flick her fingers and I would try to interact with her. I bought almost every toy and gimmick in the shops to try to engage her in some way. Friends stopped calling! I felt scared, inadequate and desperate and now very isolated and alone. Then something happened that kicked me so hard, I had to do something. I went upstairs one evening, to check if Emily was asleep and was met by the most horrendous smell!!! I turned the light on in her bedroom and saw faeces everywhere. Emily had smeared her faeces all over the yellow carpet, the walls and bed. She was fast asleep in the middle of this hell, completely oblivious to the horror of it all. I just sank to the floor and cried. 

For me, that was the lowest point in Emily’s journey and we decided to have her privately assessed, to find out what was happening. Emily was diagnosed as ‘just inside severely autistic’ when she was 2 ½ years old. I sat in the consultant’s room and listened to his every word, as he explained that Emily would never talk, never have friends, never marry, never hug anyone, never read and write, never work and really the most we could expect was that by the time she had finished school, she would be able to make a sandwich and prepare vegetables. 

I looked over at my beautiful daughter, lining up toys on the carpet and could hardly breathe! Was that it? Surely this wasn’t right? Just after Emily’s 3rd birthday, we started our ABA program, which was to be 40 hours per week for the next three years and Emily hated it and screamed and kicked and fought and bit. After 3 years, yes, Emily did know many things and had learnt that she had to do what we wanted her to do. However, outside of her therapy room, she still remained shut off and wanted nothing to do with me or Robert and did not speak. She had absolutely no eye contact and preferred to spend her ‘free-time’ lining up anything she could get her hands on – toys, cutlery, cushions, videos. We would have lines of things beautifully placed all over our home. That night, after I had finally got Emily to sleep, I sat at my computer and googled ‘autism recovery’. It was the beginning of an amazing journey for all three of us. At around 2 in the morning, I found a program called Son Rise! I noted that there was a talk on this program in London in a couple of weeks, booked two tickets and went to bed happy. I gathered a team of students who would come to the house to ‘play’ with Emily. The focus was always interaction, but it was completely at Emily’s pace and if she wanted to disappear into her own world again, this time we went with her, quietly and respectfully, until she came back to us. 

Over the next 2 years, Emily blossomed. She giggled, hugged, kissed, started to talk, read and write and gradually started to take notice of the world around her. We took her on a plane for the first time and she loved it. We took her to restaurants and she developed a taste for all kinds of foods. We started to turn her love of throwing paper into developing ball skills and we would spend all day in her playroom, just being. For the first time, I did not need Emily to conform to anything and felt honoured to share her life with her. I didn’t judge her behaviour – some days were more challenging than others – but every day was a good day! 

Life with Emily today is wonderful. She is happy and funny. She talks more each day and is starting to read and write. She loves trampolining, badminton, table tennis, racket ball, swimming, cooking and baking and gosh, how she loves cuddles. Recently we got her an Ipad, which she loves and takes everywhere with her. She plays games on it, types lists of activities on it, watches Youtube clips of her favourite Disney movies and is gradually using it to help her do the one thing she finds the most difficult, and that is talk. 

Today Emily understands hundreds of words, but uses very few of them and struggles to put them into sentences.   Currently she is using these apps to improve those skills:

Talking Tom 2 (this repeats what she says)
iSentence (sentence builder)
iQuestion (question builder)
iLanguage (language builder)
My Day ... Too! (Wh Questions and Story Builder)
Writing Pad
ABC Tracing
Notes (for writing lists)

This is a link of Emily reading her timetable

Could an iPad help your child too?

If you live in Britain, simply collect 165 old mobile phones and the Manchester-based charity Hearts and Minds will exchange them for a new iPad.

Details here:

Website: :

Note: Emily's Mum Caroline Ashby who kindly wrote this piece works at The Autism Nanny 

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