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Rett syndrome and Related Disorders
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Rett syndrome and Related Disorders

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        Routines to maximise uptime

        Here are some routines that some families created to maximise uptime. These are only sample routines. Every person is unique. Please choose whichever routine is most helpful, and adapt it as best suits your circumstances.

        Alongside every sample routine there is a downloadable version that you can print out and keep handy.

        ActiveRett Homepage

        For someone who can stand but not walk

        Weekday routine
        Before day program
        • Stand to help getting breakfast or to watch it being prepared
        During day program
        • Stand for morning assembly
        • Scheduled daily standing
          • Monday: Board games
          • Tuesday: Cooking class
          • Wednesday: Music class
          • Thursday: Board games
          • Friday: Physical education class
        After day program
        • Stand to watch TV
        Download this routine
        Weekend routine
        Morning
        • Stand to help at breakfast time
        • Stand while listening to an audiobook or music or to watch TV for 30 minutes
        Afternoon
        • Stand to watch or help do household chores (e.g., fold clean clothes, water plants, choose napkins for dining table)
          • Stand to eat snacks
          • Stand to watch TV
        Evening
        • Stand to brush teeth
        Download this routine

        prone-standing-frame.png

        It made me think about how many extra movements we could incorporate in her day using the usual routines.

        For someone who walks with assistance

        Weekday routine
        Before day program
        • Walking routine for care:
          • Walk to bathroom (e.g., 20 steps)
          • Walk to dining room for breakfast (20 steps)
          • Walk around living room while waiting for bus (20 steps)
          • Walk to bus (20 metres)
        During day program
        • Multiple activity breaks:
          • Walk from bus to class
          • Stand at a table to do activities
          • 2 scheduled walks during the day
          • Assisted walk to bathroom 2 to 4x/day
        After day program
        • Walk to bathroom
        • Walk in house to sit in living room for drinks/TV (15 steps)
        • Walk to chair for dinner (20 steps)
        • Walk to bathroom, then walk back to living room for TV, and cup of tea (20 steps)
        • Walk to bedroom, stand at bed while getting bed ready and getting clothes ready for tomorrow
        • Walk back to lounge room for massage
        • Walk back to bedroom for bed
        Download this routine
        Weekend routine
        Morning
        • Standing and walking opportunities in the house, e.g.,
          • Walk to bathroom for shower
          • Walk from bathroom to living room after shower (25 steps)
          • Walk to dining room for breakfast (20 steps)
          • Walk around coffee table to couch (15 steps)
        Afternoon
        • Walking routine for care and recreation:
          • Walk from lounge room to bathroom and back 2 to 4 times (25 steps each)
          • If weather is nice, travel to places (e.g., beaches, museums, parks, zoos), walking from house to car
        Evening
        • Walking routine for care:
          • Walk to bedroom (30 steps)
          • Stand while getting pyjamas ready
          • Walk to bathroom (18 steps)
          • Stand at hand basin while brushing teeth
          • Walk to bed (15 steps)
        Download this routine

        walking-with-frame.png

        It was a nice experience to encourage our daughter to be more inclusive in our household.

        For someone who can walk independently

        Weekday routine
        Day program (3 days each week)
        • Scheduled activities (e.g., hydrotherapy, floristry, cooking, arts & crafts)
        • Daily walking with variety in challenges or locations (e.g., visiting shopping malls)
        • Hydrotherapy
        • General walking to visit other people in the Centre
        Days at home (2 days each week)
        • Support worker helps with activities in the home (similar to when at the Centre)
        • Excursions in the community with support worker:
          • walk in local shops or library
          • borrow books or observe children's reading group
          • visit Op Shop
          • buy items of her choice from supermarket
          • buy hot chips
          • neighbourhood trike ride or walk (up to 60 mins)
        • Walk in nature, some challenging surfaces where there are no footpaths
        Care activities
        • Needs a guiding hand to sit down on toilet, but able to stand up by self afterwards
        • Wash hands whilst standing
        • Stand in shower
        Evening
        • Wind-down:
          • After dinner, rest on the lounge in front of TV
          • Opportunities to get up to eat or drink, go to toilet, or do an activity
        Download this routine
        Weekend routine
        Daytime
        • Sleep-in until 10am
        • Weekly grocery shopping (1 hour walking)
        • Wander round house and yard while mum does household chores. She can choose her activities (e.g., visit chooks, pet cats, collect mail, use watering can or hose)
        • Time for rest for next week's activities
        Care activities
        • Needs a guiding hand to sit down on toilet, but able to stand up by self afterwards
        • Washes hands whilst standing
        • Stands in shower
        Evening
        • Stay up later with family members, especially enjoy time with young nieces and nephews
        Download this routine

        walking-independently.png

        All walking activities seem to be most enjoyable when they have a purpose for the individual.
        Uptime

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