Through the eyes of a parent
Most of you, like me, have probably thought about your children’s future and for a child with Prader-Willi Syndrome, there are extra concerns. Personally, as an older parent, my hope is that my son Jayden would have settled into a living situation independent of me so that when I am no longer here and he won’t be hit with losing both his Mum and home and having to go through adjusting to life outside our home on his own.
Jayden does have siblings and I somewhat expect that they would at least oversee his care. My eldest daughter tells me she will have him live with her but I do want there to be a choice. That is a long way away and things could be different then.
Does this sound familiar to you? Do you have plans for the future? Do you have a Will and have maybe looked into special disability trusts and the like?
I was gathering information for this newsletter about the VALID Succession planning course facilitated by Maree Hewitt who also has a daughter with PWS and was given a big wake up call. What if that future is tomorrow? Maree’s favourite phrase is “when the big yellow bus comes”! Yes If I tragically die tomorrow I have a Will to look after the finances and have asked the family to assist in looking after my children. I thought that was all I could do to be ready for the unthinkable.
Succession planning is as much for parents of young children as it is for those of adults. Having now completed the 4 weeks I have a very different mindset and some of the things I need to think about now are similar to if I had to do a ‘handover’ tomorrow.
- What are the things that I personally do for Jayden?
- Who can replicate what I do?
- Of those people around me who could manage:
- NDIS planning and reviews
- Therapy sessions
- Doctors appointments
- Service providers and Carers
- Teacher interviews, SSG’s and ILP’s
And these are probably the easy things.
In Jayden’s day to day life if I had to have someone live and care for him, would they know:
- Medications and where he likes his needle and what supplements I give him.
- His diet and my approach to his eating plan. He has dessert after his evening meal every night. He picked this habit up when we stayed with his grandparents but it has in fact worked out well. He has a meal size I have allocated and if he complains about wanting more we move on to dessert which is 2 tablespoons of strawberry Greek yogurt. For him that triggers a completion of that meal time.
- His hobbies and like and dislikes
- The fact that he doesn’t like the shower on his head or that I am often a little late because rushing him will result in us being very late.
- I allow him to watch Spy Ninjas on his iPad and we have a whole series of things that will either calm him down or trigger him.
- Which people in his family and friendship circle is it important for him to continue having contact with.
So I think you get it. Wills and future housing planning is crucial but even for a young child there is so much information that needs to be recorded. Have a think about your household. If you have a spouse or partner what kind of information do they know or not know? Generally, a couple will share some care tasks and you may not be up with what the other does to keep life moving smoothly. If you are a single parent, who knows what you do? To be honest, until I sat down and thought about it even I didn’t know exactly what I do.
So in closing can I just say that it is inevitable when there is a sudden death of a parent that all children’s lives will be turned upside down and new Carers and children will take time to get to know each other. Helping your children to move through the grieving process and start to live a new normal and fulfilling life is a gift. For a child with PWS the more information, a surviving parent, family member or Carer has the smoother the process will be and that is priceless.