We were given the news last week that my niece would be discharged from the psychologist’s care as his role is only to diagnose. It was interesting watching her as the psychologist spoke to us about where we go from here. It was clear to see that she had no concept of what was being said. For the first time whilst dealing with that department, I felt that we left with some good information. When I asked what advice he had for a child who was in denial about the condition, the psychologist’s response was to show her other females with the condition and he provided literature with links to such examples as Robyn Steward – an ambassador for the National Autistic Society, Temple Grandin – an American Professor of Animal Science.
The afternoon was spent trying on boot-styled shoes for school as recommended by a paediatric physiotherapist as my niece walks with one inner ankle heading towards the ground, while the outer ankle on the other foot does the same. It is called pronation and supination. Watching my niece as she walked around in the boot-styled shoes reminded me of the days when supermarkets used to have a statue outside their shops with a coin slot to take money for the ‘Spastics Society’ as it was crudely called in those days. As a child I was always horrified by the one large black boot on the statue’s foot, bringing home the point that this was about disability. Seeing my niece walking as though her feet were encased in cement while looking at me with tear-filled eyes, I thought it best to also try on the boots as she was close to my size. What a horrible sensation! I see so many school children wearing these boots. How do they manage? Moving on to another shop with a wider range, I was pleased when she gave me the thumbs up while trying on a lighter weight, Mary-Jane style shoe from the same manufacturer. However, I will wait until the next physio appointment before deciding whether to buy these, as they do not offer any ankle support, which was the point of the exercise.
We have had words about hygiene – brushing her teeth properly and combing what was her beautiful long curly hair. I made a bold decision a few weeks ago after spending nearly 4 hours pulling, tugging and eventually cutting out large matted parts of her hair that it would be best to keep it shorter and see how she copes as it grows. Cutting out the matted hair which had arisen from knots and the hair doubling back on itself, had resulted in it being much shorter. I eventually also worked out that she needed to pour mineral water over it during the final stages of washing, as London water is so hard that it contributes to the knot formation. That plus a new brush with a mix of natural and nylon bristles seemed to do the trick. As she looked in the mirror at her accidental new look at 11pm that night, she exclaimed ‘I can do this! We had not realised until then that due to sensory issues, the poor child had been struggling to wash and brush her hair.