A common thing that many BWS parents have noticed with their children is their inability to regulate their body temperature. Before my blog I had no idea this was a common theme that many BWS children struggled with. It wasn’t until I started to connect with BWS families and ask them, that I realized many children have this issue, and no one really knows why. My thought is, because BWS children have extremely fast metabolisms, maybe that could attribute to overheating. Research is still developing in this area so there really is yet to be any hard facts on this issue.
I noticed Owen’s issue with temperature regulation early on as an infant. He would get so red and hot while he slept. For a while I just thought it was because he was an extremely large child, but it never got better. If he is indoors he is fine unless he starts to run around with his brother. If he becomes super active he overheats much quicker than our older non BWS son. In the winter it usually isn’t as big of a problem because it is easier to keep him cool. In the spring and summer our struggles with overheating are much more challenging.
When activity becomes to much
Owen is a very active child so keeping him inside really isn’t in the cards for us. What I started to do was make sure to have extra water on hand and to try and keep him shaded as much as I possibly can. I also always try to have him places where there is the option for him to swim. This allows him to easily cool off if he becomes to hot. However no matter what I try and do he always becomes bright red outside. So much so that a stranger felt the need to tell me that I was abusing him.
Yes you read that right. This past summer I took my two boys to the beach along with my youngest sister Gianna. We were at the beach playing and having a good time. I picked an area of the beach that was closer to the water because it is always cooler the closer you get to the water. The boys asked me to bury them so we started digging holes and having fun in the sand. The boys were complelty buried up to their necks and were smiling ear to ear. Neither one of my boys wanted to get out.
When strangers can’t hide their ignorance
As my boys sat there enjoying the view of the ocean I sat in my chair and was taking in the scene of the beach. I was then greeted by a not so lovely woman who for some reason had an ax to grind with me. I have always been the type of person who believes in minding your business, unless of course someone is obviously harming their children. This woman came up to me and told me that Owen was getting sunburnt. I was instantly annoyed but gave her the benefit of the doubt. Owen does look awful when he is in the sun. He sometimes turns purple because of his issues with regulating his temperature. I nicely responded and told her that he overheats and he in fact isn’t sunburnt. I thanked her for her concern and thought that would be the end of it.
She then threw out other concerns such as – “Your son doesn’t look like he is having fun.” or “He has sand in his eye.” At this point I began to get very angry. I sternly told her we had everything under control and gave her an obvious message that she needed to leave. She then walked about 5-10 feet from us and continued to watch me with my family. She watched us so long and was so obvious about it that the entire beach was now aware something was transpiring. My oldest son Michael became very uncomfrtable and told me she was continuing to stare at us.
I addressed her and asked her why she was harassing and staring at our family. Again she brought up Owen’s red face. She told me I was abusing him by letting him burn. She then brought up his mouth, tongue, and the fact that he was drooling. At that point all bets were off. I did my best to give her an education lesson in BWS while at the same time letting her know how incredibly ignorant she was. She continued to tell me I was abusing Owen by letting him burn. I could not believe the altercation I was having with this clearly miserable woman. Eventually I told her she needed to get away from my family and she left.
Recognizing the signs of overheating
You want to talk about overheating? I have never felt more overheated in my life! I could not believe there are actually people out there that say the ignorant things this woman did. It is bad enough BWS mothers have to deal with the stares and judgments people throw towards their children. Never did I think someone would accuse me of child abuse because of Owen’s red face.
One thing we struggle with when it comes to Owen and overheating is his behavior. He becomes incredibly angry and frustrated and has total meltdowns. It’s almost as if he just flips a switch and until he cools off he goes into hulk mode. This has been one of the hardest parts of overheating to manage because I don’t feel right disciplining him. There is a huge difference between bad behavior he can control and behavior he can’t. I am starting to get better at recognizing BEFORE he starts to lose control and before he overheats to much. Getting ahead of the meltdown helps a lot!
When I notice Owen is headed towards meltdown territory I immediately try and cool him off. Whether that is with water or putting him in the shade. I will also try and redirect him. Those things seem to help although they don’t solve the problem completely. I am always trying to learn as much as I can from other peoples experiences with BWS. Because of this, I began to search out other BWS families who have older children so that I could see what their experiences with overheating are.
Learning from one another
Through connecting with other BWS families who have older BWS children I have been able to learn a lot. I connected with a man named Tim Delgado, the father of a 10 year old BWS boy named Dax. I sat down with him and asked him his experience with his son and overheating. You can read that here. Through connecting with other families not only have I learned so much, but I realized that together we all really can help one another. Whether it’s tips and tricks to help our children with overheating, or just moral support for all the bull shit we go through from complete ignorant strangers. Knowing there are other people who have similar experiences or can truly understand has helped our families journey with BWS immensely. To all the families who have shared your experiences with mine, THANK YOU !!
Live Large & Stay RARE.