From PWS Notes
Jump to: navigation, search

My son is now 10 years old. He is the youngest of 6 children. When he was born - any given day - one child or another would forget a practice a party or other such nonsense - sending any schedule we had right out the window. My husband travels extensively - has for 14 years now - so inflexibility just was not an option for us.

Dinner is never at the same time - and neither is breakfast for that matter. We have never as a family been very good at adhering to a strict schedule. When they told me my son would be inflexible - I could do nothing more than cry. I could not imagine our family accommodating a chronically inflexible child.

Well here we are 10 years later and My son is not what they said he would be. Yes - we have PWS issues. There is food seeking, nothing we cant handle. An occasional meltdown when we put something to him in the wrong way. And persistent requests for meals that are delayed - but nothing like the inflexible, tantruming, demanding child we were told we would have. Do I think some of it may have to do with our schedules - perhaps.

We still have a crazy schedule, and meals are never on time, and plans change at a heart beat, but this crazy family has learned to adjust - and my son right along with us.

Let me give you a today example. My son is going to a birthday party tomorrow. I called the mom to find out the plans. (She informed me that the birthday plans are not solid. She and her husband want to take the party to a park 45 minutes away and go on a 45 minute winter hike thru the woods. My son does have issues with endurance and hypothermia... there is no way he could do this. An out door party in the middle of winter is inappropriate for my son - let alone any other kid...LOL. We had to tell my son this - and tell him - that he would not be able to go over there and why. We told him that he simply can't be outside that long because of his issues with hypothermia. He immediately started to meltdown - I just wasnt' fast enough. I blurted out that he would be going over there in time for the Ice cream sundaes! His silenced and began an intent listening.. I know food will get his attention quickly. He quieted long enough for us to tell him - he could go over when the party got back home and there was only an hour left to play outside. And that he would be going for Ice Cream and goodies. My husband said - that's great - I have an errand to run - we can go to McDonalds for lunch. I immediately said - AH NO!! Our son can't do that and have all the goodies at the party. This was all in front of our son..... By now he knows our routine, and if he wants to go to parties - with no restrictions, he other meals at home are drastically reduced. I told him that we would be having brunch - not breakfast. I would get up and make bacon and eggs around 10:30 - 11:00 and he could have a vegetable snack before the party. Then he could enjoy the Ice Cream sundae bar and come home and have a nice dinner. NO Issues - no meltdowns - no problems. But we have always handled these situations in similar manners.

So I am not telling you that you will or won't have issues. Your child has genetic predisposition not only to PWS but to the behavior of you and his father. Nurture also plays a great deal in this. So, the best you can do is just what you are thinking. Preventative measures now and hope that they work in the future. And if they don't - you can't blame yourself. Its just part of the package.

And by the way, out of 6 kids, they are all so different. They all have their quirks and issues. At this moment in time - our boy with PWS really is the least of our worries. Teen age boys are the worst creatures! I worry more about our 20 and 18 year olds.

Don't be afraid of the future - that story is not written yet. The children who are just now being diagnosed has so much hope. Things are changing so fast in PWS. I remember when GH was only given to children over the age of 7 (that was when we fought to get our son on it and he was only 2 1/2. ) So have faith. Dont be afraid to meet parents of older children - many of them have such wonderful things to tell that they feel they did right and where they may have done things differently.