12 months on after diagnosis and we are still learning, getting it wrong and trailing new strategies and tactics.

Balancing between our princess’ “normal” and what society expects normal to be.

We often get the balance wrong and this often brings spectators, disagreeing looks and unimpressed gazes about our parenting choices.

To get this balance right and to continue to “go outside” we developed (with the assistance from various therapists) many strategies and tools to assist our princess. I thought I’d share a few.

A literal bag. 

In this bag we have:

  • noise canceling headphones
  • slime or therapy putty
  • fidget toys
  • note pad and paper
  • change of clothes
  • baby doll (with a change of clothes)
  • iPad 

This bag is a life saver, buying us time and proving a different focus for the princess when the ‘outside’ gets to hard.


(that is giving our princess time to reset, process the day and to have time alone)

It takes a lot of planning to go on an outing and a normal part of the routine and event is ‘down time’ although not a favorite part of the trip for the other 3, this is vital time to ensures we  can have an extended play or activity.

Trips on trams, walking in crowded spaces and loud noises all cause over stimulation and anxiety. The key is for us to pick up on the triggers early and redirect or utilize some of our tools. i.e. headphones to take the focus away for the object or thinking causing the anxiety.


using slime and headphones to relax

Independence and Choice


Our princess has her own style and is extremely unique. We want to assist Jenna to embrace her own reality and explore what it means to be her. That is even if this included an outfit as a skating ballerina in a tutu whist shopping.

Time with Dad


We love exploring and taking adventures to new and exciting places. This is a picture of our latest trip and although she found it difficult for in the crowds and noise. It was a fantastic day had by all.

Trying new things

Although, she would never admit it she loves her big sisters and wants to be like them. This involves trying new things and exploring in ways that she normally would not. Her sisters help her stretch, dream and try new things. To this I am extremely grateful.