The weather is finally nice out. Actually it has been fairly warm, around 87 to 95 degrees. This has reminded me that I need to get the winter clothing put away. The reason that it becomes so obvious that I need to do this is when I have to start wrestling overheated children out of their winter coats. The look that I do love is the mud boots, pullup and winter coat. This is indeed a fashion statement. In the scheme of things this is not the most important issue in the daily life of a child with Fetal Alcohol Spectrum Disorder (FASD). The way I look at the dressing issue is that does it really matter? Doodle loves to wear his Scooby Doo costume. He would wear it everywhere. So really many people may see a 9 year old in a Scooby costume and kind of have an issue with it especially when it is nowhere near Halloween but in the scheme of things is this really all that important? Now due to the fact that Doodle cannot moderate his body temperature so there are times where we have to make sure that the Scooby costume is out of sight so that he cannot overheat and then have issues with his health (ie. Seizures). So while I do not care if he does his own thing we do have to step in when it becomes dangerous. Baby J loves to wear everyone’s shoes. He immediately goes to the door whenever anyone comes and takes off shoes to make sure he can get them on. Mostly we let him (if the visitor is okay with it) but he has ankle issues and so when there are say high heels or boots that make him turn wrong we have to make sure to take them off. It is okay for them to express their unique tastes and they can be very fun but still have to look at what is safe.
For people who are helper brains or external brains for someone with FASD it can become an issue as they get older it is harder to decide how to help keep their environment safe. Safety is always an issue with young children. There are countless manuals, articles, websites and heck even people who will come and do it for you. However, when your child grows it is assumed that they will learn to avoid many of the household and environmental dangers themselves. Well when you add in the fact that as your child or person ages and or the fact that they do not want to be “ babied” or “hassled” it can become very hard to continue to “safety proof” the home. It is important to remember for MOST (and I say most because this is not a cookie cutter disorder) people with FASD they continue to need pretty much 24/7 supervision of some sort. This does not mean they can never have their own life. This may mean that they need to plan their day with you in order to keep them from getting bored and seeking out company that may lead them astray. So perhaps it is just as simple as this or perhaps it is having them have an extra signor on their bank account so they do not give all their money away. The problem can be that in general people with FASD are very giving and if they can help by giving you their life savings they may without realizing that they will not be able to continue to live without this money. Again this supervision needs to be looked at on a case by case basis. You cannot make any blanket statements but I also will say there are very few parents and caregivers who will say they wished they gave less supervision, usually in hindsight it is that they see they should have given more. I know this is where we are with our oldest child who ended up paying a very large price for a stupid mistake that continued to snowball for him.
Daily life can be hard to know how to maneuver in the constantly changing environment that is FASD. The needs of the person dealing with FASD truly can change by the day. Keep trying new things and try talking to other people to see what works for them. Although each of us know that what works for one person will not necessarily work for others and what works one day may not work the next. Thank you for reading and thank you for sharing your own hearts.