Scheduling the holidays

Our daughter Isla was born with a rare chromosome disorder causing autism and epilepsy. Unlike most neurotypical children she cannot entertain herself for long. She can watch TV or any other screen all day if you’d let her but cannot self direct very well and often needs someone alongside. Left to her own devices this often includes dismantling, unscrewing or breaking something. She goes through stages of playing with her toys or reading books but the lure of TV becomes too overpowering.  We banned her IPAD nearly a year ago as she was well and truly addicted.

We have 8 weeks off school here in New Zealand. It seems quite daunting thinking of ways we can keep her entertained and screen free during this time. Fortunately we are going away for a beach holiday for 10 days. This is the perfect time it seems to commit to a strict schedule that will help us all stay on task. I am hoping when Isla knows what is expected and planned each day this will help motivate her to get out of the house and to take part. This may include a walk in the morning with her service dog Bo. A trip to the beach before it gets too hot or a day trip to explore on a rainy day. A set time for morning tea, lunch and afternoon tea. Down time scheduled and timed with a book or TV. Another walk or scooter ride early evening and a family board game.

Santa this year is bringing everything to help us achieve this. New sand toys for the beach and plenty of books.

This will require a little more work and organisation on our part. It will also mean not as much lazing around but I think a little less screen time will actually do us all the world of good. It will be great to live in the moment, make the most of our summer holiday while teaching Isla how to schedule her time. We will have to parent even when we don’t feel like parenting but I am sure will be so rewarding.

It seems so easy writing this down. How hard can it be??!!!!

Wish us luck!!!!

Written for Firefly Friends

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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