We’ve consulted with a physiotherapist, occupational therapist, speech therapist and dietician. Every few weeks I realise I need to get on top of all input I’ve been given and practically work out a way to fit all the things I should be doing with Sarah-Hope into a daily routine. What I have found helps is writing down everything I need to be intentional about doing with her, and then grouping those ideas into categories, and focusing on one area each part of the day. For example, when Sarah-Hope was being fed every 3 hours at about 5 months old, I’d do nursing, body care, sensory and hand work during the 6 – 9am slot; gross motor development exercises during 9am – 12 slot, visual and sensory input from 12 – 3pm, and movement through space in the 3 – 6pm section. Having something specific to concentrate on for each part of the day helps me get to the end knowing she’s had input covering the major priority therapy areas – and the rest of the time I can just enjoy Sarah-Hope for who she is. Of course I have to keep adjusting this every couple of months to include all the latest advice and ideas as she develops. I put quite a lot of work into it at the time, but then once the ‘programme’ has been developed I really enjoy being intentional in my interactions with her. Therapy goes out the window on hospital days (for her platelet transfusions), and on weekends when we just enjoy each other as a family and don’t focus on any exercises unless they are quite critical for her at that time.
Being intentional about Sarah-Hope’s different development path, however, has made me consider the balance I have to strike between compensating for her physical shortcomings by “taking the world to her”, and the acceptance of the fact that she will not be able to have all the experiences that typical children do. I am sure that this will become more and more apparent as time marches on.
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