Monday, June 5, 2017

When Your Brain Is Struggling -Life With FASD

I have read stacks of books, talked to doctors and therapists and watched training's online to learn all I can about FASD. Despite all that, I was lacking one thing. I didn't know what it feels like to have a brain that is unpredictable in it's responses. While I knew that FASD affects a person's ability to function, I still found myself getting frustrated with Joseph. I prayed for patience and wisdom, never dreaming that one day I would be able to personally relate to Joseph's struggles.

Many years ago I was put on an antidepressant and while it helped me initially, over the years it has been doing more harm than good so with my doctors permission, I decided to quit taking it. Little did I know that I was about to begin one of the hardest physical battles of my life! While many antidepressants affect one neurotransmitter, I have the privilege of taking the one that affects two of them, making it ever so much harder to wean off of it. To give you a bit of an reference point, I have been weaning off the this medication for 18 months and still have several years to go, unless God performs a miracle and heals my central nervous system.

Now I know what it is like to search for a word or thought and be unable to find it. It is like my brain does a search and comes up empty. I teach Sunday School every other week and my class of 4&5 grade girls are very used to me stopping in the middle of an explanation and not being able to find the words to finish. Joseph does the same thing, he will be talking and suddenly he loses his train of thought. It can be frustrating because it takes him a long time to find the right words to explain things, so you stand there waiting, only to have him be unable to finish his sentence. Now I am the same way.

People with FASD often struggle with social skills. I can sympathize now. Some days I can carry on a conversation and other days, I can't think of a thing to say which makes socializing difficult to say the least. Other times I do and say things that I know are incorrect or walk away in the middle of a conversation. I know I am doing something wrong but I can't figure out what is appropriate. 

Joseph has a hard time regulating his body temperature. He will be cold on warm days and warm on cold days. Now I am the one shivering in the sunshine or sweating away when it is cold outside.

Someday's Joseph wanders around unable to apply himself to anything. His toys don't hold his interest, he can't read and nothing sounds like fun. My withdrawal makes me feel the same way. There are days I find myself pacing around the house because I am unable to collect my thoughts enough to get any work done. Reading, my favorite hobby doesn't even hold my interest.

There are times when Joseph is just grumpy. Nothing makes him happy, everyone annoys him. I can relate so well. I have become personally familiar with irritability in the past 18 months. 

Loud noises hurt Joseph's ears. The singing at church can be enough to make him cover his ears. I never understood, now I do. Just ask my children. I often tell them, "Please stop making that noise!" When they are unaware they are even making a noise.

Joseph needs 12 hours of rest a night to be able to function. It takes an incredible amount of energy to make it through the day when your brain is struggling. I sleep and sleep and sleep. Tristan asked me how I can sleep so much. I told him my brain gets worn out from thinking all day.

Joseph quickly becomes overwhelmed when we have to much planned. We used to keep our schedule fairly empty because we knew he needed the down time. Now I have to carefully watch my schedule because I am easily overwhelmed. When I get overwhelmed the only cure is 10 plush ours of sleep and several quiet days at home. Pushing through it doesn't work, it only makes it worse. So Joseph and I thrive on quiet days at home while the rest of the family tries to accommodate us.

It is like all my senses are painfully heightened and I never know which days they will rise to unbearable levels making me want to crawl into a hole and hide until the storm passes. I share this to say, if you love someone with FASD, please show them extra grace. My heart goes out to them because while withdrawal is horrible, I have the hope that someday I will feel better, while those with FASD do not have the privilege of thinking if I can hang on, it will be better in a few years.

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