Trapped

At this point the virus has a lot of us feeling trapped. This feeling is simply perspective though. I am sure other parents with children that have mental, physical, and emotional disabilities can relate to what I’m about to write and add to it. Here is some perspective for you all.

Our ten year old daughter with fetal alcohol syndrome (FAS) has been a complete mess the last two days. This has nothing to do with the virus or what is going on in the world. She is not missing school or friends. She simply cannot regulate her emotions when she does not get what she wants exactly when she wants it. This has been an evolving situation at school as well, which has led to major battles at home – see some of my older posts (most recently – FAS – The Chase).

I’m not sure if my wife is a saint or masochist – maybe both? She has more patience than I thought was humanly possible. She goes out of her way time and time again to give each child what their needs require. She is truly amazing at being their mom.

As expected, when school was unexpectedly cancelled for the next month, my wife went into planning mode immediately. We know that without a super structured schedule we would be in trouble. The two ten year olds tend to “thrive” (using that word loosely) in a structured environment. They struggle a ton when that structure disappears. We have learned this the hard way during winter, spring and summer breaks.

She set up a very, very simple plan for our FAS daughter. 15 minutes of “work” and at least 15 minutes where she can do what she wants. “Work” over the past two days has consisted of watching two Facebook videos on topics she loves – animals and drawing. This was apparently too much though.

Our daughter has hit DEFCON 4 both days now. Notice I didn’t say DEFCON 5. I reserve that for when I have to chase her through the neighborhood screaming stranger danger (her not me).

Today she got so worked up she gave herself a bloody nose. When she noticed the blood she immediately broke from the melt down and has been mostly ok since. It’s pretty clear this all begins as a manipulation game, then turns into a complete lack of emotional control when she doesn’t get what she wants, which then turns into a melt down. The level of frustration we feel with this complete lack of control is overwhelming.

On the other extreme our eight year old FAS son has no clue that anything is different. You may say, well of course he doesn’t know what is going on in the world, he is eight and has brain damage. That is totally fair, but not what I mean. He hasn’t noticed that his school aged siblings (all four of them) are home every single day. If you lived here that wouldn’t surprise you because you would already know he doesn’t understand days of the week (school days versus weekend days), the seasons (he asked why the pool wasn’t open when there was snow on the ground), or time (he wanted more time in the shower so he asked for 12 seconds). Living with these two is truly bizarre and very difficult to explain most days.

The point is we all live with challenging circumstances from time to time and it’s pretty likely that someone else has it harder than you. Keeping that thought in mind can be of great help when you are having a tough day. Especially if that day is your child basically calling you a kidnapper. If it’s endurable, then endure it. Stop complaining!

All that said, I want to get on my soapbox for a second. The real sadness in all of this is my wife and I aren’t the ones truly trapped (although I feel it most days). Those two kids are. They are trapped in their damaged brains every single day with no way out. Maybe medication and therapies can help our daughter control her emotions better, but it isn’t going to be cured. We have lost most hope that our son will ever function without significant help or know the world around him.

They didn’t choose to be trapped. They were put in a cell before they entered this world. The fact there is little to no outrage about the circumstances of this population is extremely sad.

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