PWS vs. Age Appropriate
OK, if you wake every morning in fear waiting for the "appetite monster" to kick in, then hopefully you will benefit from this story. Most people that I have talked to (including doctors and health agencies) have either never heard of Prader-Willi syndrome or they know only a little bit about it. The main focus is always that they have heard of the eating problem, so of course this is what my heart and head also focused on. Those words "insatiable appetite onset between the ages of 2-4, but could be earlier or later" is printed in almost everything I have read and been given. It would seem that with all else going on in our lives that we wouldn’t have the time or energy to think about something that hasn’t happened yet - but we do. I would scrutinize and evaluate everything my son, Jason would do. If he took a large amount of formula that day (which still wasn’t allot), OH NO! the appetite kicked in. If he took two jars of baby food and still drank from his bottle, OH NO! the appetite kicked in. This can get pretty tiring and by the time he was 2 years old I was just mentally exhausted. For myself and my family, I had to get a grip.
As Jason got older I started hearing a couple of new phrases from people outside of the PWS circle and then from parents of older children with PWS when I voiced my daily "appetite onset" concerns. Now, please read carefully and make sure you remember this the next time your child is doing something –
"That’s AGE APPROPRIATE!" or "That’s DEVELOPMENTALLY APPROPRIATE!"
Simple statements, but Oh so true. Yes our children have PWS, but they are also growing (in mind, spirit and body) individuals. Some days your child will eat more and some days your child will have a fit or temper tantrum and will get frustrated - - - they do that, I do that. Don’t try to blame everything that happens on PWS and don’t live your life around PWS. Sure I’m going to think about what might happen in the future and you bet I’m going to do all that I can do today to make my family’s life an enjoyable one. But please don’t forget what a typical child would be doing at that developmental stage and then deal with that. I’m going to give you two examples because developmentally appropriate and age appropriate are two different situations. My wish is that you laugh at my anxiety, learn from my neurotic behavior and see a brighter light at the end of the day - because that’s what I can now do.
DEVELOPMENTALLY APPROPRIATE:
During one of our many doctor visits in December of 1999, I was sitting in the back seat with our almost 1 year old son, Jason. My husband, Steve was driving and we were going over questions for the doctor. As we got further into the traffic of downtown Cleveland and were stopped at a light, Jason pointed to the delivery truck stopped next to us. He got very excited. I saw this huge picture of a Hostess muffin on the side of the truck and immediately went into panic mode. Within a split second I was so distraught, depressed and filled with fear. I told my husband, "Oh No, his appetite has kicked in, he’s just a baby. I can’t deal with this, I hate PW!" My wise and wonderful husband (who I was convinced was in denial at the time) said "No it hasn’t, he’s pointing to the truck, now stop saying that". I DID NOT remember that within the last 3 weeks since Jason could independently sit up, we had given him a box of toys from his brothers labeled 6-9 months old (this is where he was at developmentally). I didn’t remember that for the last three weeks we had placed in front of the little guy tons of trucks and cars that moved, had sounds and we encouraged pretend play. I DID remember "onset of appetite . . . ." We drove a little while and again had to stop at a light and had a different plain-sided truck stop beside us and again Jason pointed and was so excited. He was pointing to the truck. He was just doing what a 9 month old (not his age, but his developmental level) that loves trucks would do. His action had nothing at all to do with PWS and on the way home from the doctor visit, Steve and I pointed out the trucks for him to see.
AGE APPROPRIATE:
Jason had just started crawling at 21 months, 3 weeks after we started giving him CoQ10 to increase his energy level. He was now going strong and exploring the house everyday. I had bought alphabet magnets and put them on the bottom half of the refrigerator so he could play while I cleaned the kitchen. He had a blast, but unfortunately he kept putting the magnets in his mouth. One night after all the kids were in bed, I moved the magnets up to the top of the fridge so I could have more control the next day as to how many magnets he would be playing with at a time. After breakfast, Jason was on the move. I heard him getting upset and found him in the kitchen throwing a fit slapping at the fridge door. "It’s happened; my little boy’s going to be hungry for the rest of his life." I sat on the floor and tried to hold him, nothing would comfort him. As I was picking him up he reached over and grabbed one of the magnets. He immediately stopped crying. He wanted the magnets and I put them out of reach. He was mad and throwing a fit because he wanted something. He’s a two year old, that’s what two year olds do. His actions had nothing to do with Prader-Willi syndrome. We now have larger alphabet magnets on the refrigerator and he is still having a blast.
One last note: As closely as we watch our kids, do you really think that you’re going to miss the signs of the appetite kicking in - I don’t think so. Your not going to MISS the onset, so don’t start LOOKING for it. Enjoy your child, your family, your own life.