Hospital life: our open door

We have an open door policy.

It’s partly because we still spend a lot of time in our room and a closed door just makes our existence that much smaller. It’s also because welcoming people to your home at any time is how I was brought up.

The down side of that in our current accommodation is that nurses, doctors and every other specialist in the hospital are already in the room before you can psych yourself up for them. At times it feels like mental aerobics trying to keep up with all the different issues that come through that open door.

But for all of that work, the benefit of the open door policy was evident this weekend. At times Deane’s room felt like a house party. There were visitors we expected: family, friends, a therapist, a classmate and a teacher. There were others who have been before but came again unexpected and there were those I had never met before but know Deane from the bus or from school.

Besides the enjoyment Deane got out of all these visits the great thing was how much I learned. The disabled community is not very big but it is isolated and internally divided. Often parents feel like they are on this journey alone. Through these visits, I heard about clubs for disabled teenagers, significant potential changes to schools for disabled children, a new adapted communication app for the iPad and a one-on-one music therapy program. Not bad for two and a half days.

Many of the activities Deane has participated in have been things other parents with disabled children have told us about. What happened this weekend is key to getting the best for our children. The more we all reach out and help each other, the less isolated, the less overlooked, the less stigmatized the disabled community will be.

If you have experience to share, drop by anytime. Our door is always open.


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