Tuesday, 26 April 2016

Signing - a communication tool!

We were asked to guest blog for IPWSO (International Prader Willi Syndrome Organisation) on the use of signing as a communication tool.

Have a read here... here

Sunday, 24 April 2016

A Change-About Day

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening. 


But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, The Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing! 
After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house.

This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car.

To my horror, the key I thought was the spare key was not for this car. I assessed the situation. The Lodger was happy, smiling and chatting away about how we were going up to my work, he'd have his snack there, say hello to everyone and then we'd go to the shop. This was the plan we'd talked about that morning......

I looked at my son and I broke the news in as positive way as I could 
'Great news The Lodger, I just got a message that today is a Change-About Day.' 
I explained to him that we had to go back inside, and have our snack there.

No No No No No No
No House
No No No No
Work....
Car....
No No No No No house
No eat
No No No No No No No

I struggled back into the house, wrestling a carseat, empty shopping bags and a very upset Threenager! 



In another world free of Prader Willi Syndrome, I more than likely would've used food to make my Threenager happy. It's so very easy to use food as a tool for changing emotions.    

We work everyday to keep The Lodger healthy. In our house we don't reward, punish or cheer up with food. Food is fuel in our house, nothing more than that. 

I couldn't give The Lodger his snack until I knew he had accepted the change to the day and that he was his happy self again. 

We sat on the couch and we talked about how plans change sometimes. We talked about a Change-About day, were things don't go according to plan. I used Walter and the gang to act out what had happened. After a little while, he thought it was hilarious that Daddy had the two keys. So much so, he pretended to open the front door and imitated me saying 'O No, no keys!'.

The day continued in it's altered version. The Lodger was happy. 

We can't protect him forever on changes, they will happen.  Friends who are calling over might have to cancel, we will tell him we're going to visit someone and they might not be there, and I'm sure that's not the last time one of us will accidentally take keys to work.....

We are teaching him to cope with changes and that it's ok to feel sad or cross, that the feeling will pass and he will feel happier soon. As his parents, we hope we are teaching him skills for life. We know food will always play an important role in his life but we are teaching him ways to identify his feelings and techniques to help him change the way he is feeling, without the need to use food as an emotion changing tool! 

As always, The Lodger Winning - PWS Nil!