Supporting children with Rett Syndrome and their families when confined to home

Household chores

• Cooking
  • Choosing what to prepare for meals and what vegetables go into the cooking.
  • Helping to mix ingredients.
  • Smelling to check that the cooking is good – smelling basil when making a pesto.
• Making sweet treats such as cupcakes or cookies, including lots of choice making. For example, the child chooses
  • How the cupcake should be decorated?
  • Which colour should the frosting have?
  • Chocolate buttons or no chocolate buttons?
  • Whipped cream or no whipped cream?

• Making small pizzas where they choose what they would like to have on their pizza – ham, pepperoni, beef, chicken, olives, cheese, etc.
• Participating in kitchen activities whilst standing up. Your child could use 0/1 contacts (with a Powerlink) to activate kitchen appliances such as a blender, the stand mixer, or help make the coffee by activating the coffee grinder.
• Helping with chores such as putting out the trash, bringing in the washing.
• Include outdoor chores: watering in the garden or “washing the car”.

Personal care

• Make a schedule for awake, rest and sleep time. If you have cards, create a daily schedule of pictures for the activities. Enable choices, e.g., which clothes to wear.
• Hairdresser games – brush hair to make funny pigtails and braids, or put on make-up or nail polish.
• Massage-therapy for the hand, feet or shoulders. Use different sensory stimulation – e.g. a soft brush, feathers, a ball, a smooth stone. Let them choose – do it for 5 mins and let them choose again.
  • You can make your child more active by asking “do you want more, or should I stop?” or “Do you want me to continue?” every time you stop.
  • They can answer by pointing to more/stop or yes/no symbols with their eyes (or hands), they can use two talking switches with ‘more’ and ‘stop’ or ‘yes’ and ‘no’ recorded on them, they could use their eye-gaze computer if they have one, or they can express it by using bodily expressions.
• Different sensory stimulation of their hands (or feet). Perhaps use this as a part of hand washing activities.

Learning and Education

• Reading books with siblings and adults in the house. Read to each other.
  • Look online in your area as many librarians are hosting virtual story hours.
  • Look at Youtube videos of favorite books or websites where you can click on books to be read to your child: https://www.storylineonline.net/
• Art activities such as painting or gluing. Let them choose which shapes or colours you should paint or what to glue together.
• Playing instruments with siblings and adults in the house.
• Singing with the family for fun and as a choice making activity, e.g., record every second line on a Bic Mack step-by-step. Family sings the first line and then stops, child sings the next line by pushing the button on the BigMack, and so on.
• Foot painting. At first, you can look at paintings by professional artists on the internet and talk about what you like. For this activity you need paper, paint (like finger paint) and your feet. A4 size paper can be taped together and form a large canvas. Then walk on paper with paint on feet, different sizes of feet, and different colours makes it more exciting. If one liked mountains or houses, try to copy the shapes and colours from favourite paintings. Can be followed by a footbath.

Exercise and Activity

• For individuals who spend a lot of time during the day sitting in a wheelchair or sofa, sitting at the edge of the sofa or on the edge of a table could be a good exercise for improving balance
• Tummy time – Mom, Dad or someone else lies on their tummy also and the child can make choices to develop the story, e.g., what are the characters, colours, background and so on.

• Walking in the house and garden – on the flat/ slopes/ steps/ lawn.
• If you are allowed to leave the house and live in a rural area, walk outside in the bush/forrest, on uneven terrain, or go up and down hills. If you live close to the sea, walk on the beach or in shallow waters.
• Stepping and dancing to music – this good for stamina and balance. Let your child and siblings take turns to choose the music. If the person with Rett syndrome can’t walk by themself, put music that you both like and dance with the wheelchair or a walker if you have one at home. It’s good for morale, and it is also good exercise for you.

• Stand in a standing frame while listening to music or audiobooks. Use it while eating with other family members while watching TV or when participating in cooking in the kitchen.
• If you don’t have a standing frame, consider how your furniture could be used to support standing practice, such as in the photos.

Indoor Play and Games

• Build an indoor house or tent and play inside. If you have a garden, build one outside.
• Doll play –
  • Make different symbols/pictures/simple drawings with what can be done with the doll, e.g., change the doll’s clothes, change the diaper, tuck the doll into, bath doll, etc.
  • Arrange the symbols so that they can use their eye gaze and for them to choose what should be done with the doll, and then you do it together.
• Paper dolls – Let the child choose what the paper doll should wear.
• Playing games with bubbles or with sensory toys such as in the photos – an opportunity also for extra time practicing sitting or standing.
• Create a bin of plastic balls, oats, sugar, dry beans or split peas, etc. to submerge hands or feet. You can move their hands or feet through the bins. When finished, use a warm washcloth to wipe down the skin and then apply lotion. Sing favourite songs or playing music as you go.
• Dress up in favourite clothes and dance/ move to music of own choice.
• Playing games on a tablet that involve choice-making, e.g.,
  • A tea-party where the player can choose which napkins, plates, and cups to put on the table and the food be served.
• On a tablet, it may be difficult for your child to point to their different choices. Instead, you can use a pipe cleaner where you fold a small circle at the end of it, so when you put it on one of their choices, the pipe cleaner accentuates the choice.

Nature and the Outdoors

• Spend time on the patio or in the garden, picking herbs or flowers. Make a few holes on the cap of a plastic bottle and water the flowers. Help your child to walk from flower to flower with you and water the flowers lightly squeezing the bottle.
• Walk barefoot in the garden.
  Bouncing on a trampoline while lying prone or supine, sitting or standing.
• Playing on swings and slides.
• Rolling on the grass or mattresses.
• Playing hide and seek assisted. One can do this in-door and out-door.
• Playing on swings or slides.
• If you are able to, play outside and go for walks in wide open spaces – choose parkland, bushland, and quiet beaches not playgrounds. Or take your dog for a walk.