Tuesday, July 17, 2018

From The Inside Looking Out - When FASD Is Hard To Explain -Living With FASD

I have recently begun following Beating Trauma With Elisabeth Corey  and love her many thought provoking posts and comments. If you are a victim of trauma. or parenting children with trauma, I urge you to check out her FB page. She works with adults, but her writings offer insight into why our children struggle in particular area's. As I have said before; FASD is a form of trauma due to both the prenatal exposure the child endured, and going through life with this particular form of brain damage is an open invitation for further trauma to occur.

When I feel frustrated with someone who obviously does not get Joseph's disability and through their interaction with him, are compounding the problem, I try to place myself in their shoes. What must the situation look like to them? Here is a child who's parents have obviously placed severe boundaries in his life, they also monitor his speech and actions,while insist on being by his side at all times. For all intents and purposes, the parents appear to be both coddling him while not allowing him to have a social life. When someone comes to me in what feels to me like a defensive manner, and begins questioning our parenting of Joseph, I am slowly learning that they won't be able to understand no matter how much I explain and I must remember that, "From the outside looking in, it is hard to understand."

The flip side is when you are on the inside looking out and you know if you could help people understand that you aren't being mean to your child, nor are you coddling him, you would have a great deal less stress. If only they could understand that you are merely providing the supports and boundaries he needs to both thrive and survive, and that if it were at all possible you would be only to happy to let up on them. I don't think you can explain how draining it is to keep a constant eye on your child, to think of the 101 things he could get into even though you have been super vigilant. Joseph has the uncanny ability to get into trouble or hurt himself, even when he is in line of vision. It is due in part to his lack of cause and effect, along with dysmaturity which means that while he is the size of a 10 year old, he is developmentally between the ages of 3-5. He is tall enough to reach the counter tops, the stove etc. but he can't be trusted not to turn on the stove or taste a mouthful of spices. 

How do you explain that while my son can speak fairly intelligently on certain subjects, he has no idea if a topic is appropriate, nor when it is time to discontinue the discussion. He will talk to you about any given subject for as long as you listen. The more you engage him, the more he talks and the bigger the fall out will be. How do you explain that interacting with my child causes him to become hyper vigilant without sounding like an over protective, paranoid parent? The brain power needed for each interaction, rapidly uses up the meager store he has on any given day. This means he won't have enough brain power to regulate his emotions, follow instructions, or even enjoy the remainder of his day. When he becomes over stimulated, his cortisol goes through the roof and he is unable to relax enough to sleep, resulting in still more tears. 

How do you explain the grief you feel when you see your child mourning his inability to interact with his peers? I often hear, "But ____________ is 10 and he can ___________, so why can't I?" He cannot understand that he has a disability, he only knows that others his age have privileges that are light years beyond what he can enjoy. 

And then there is the guilt that you have to work through in order to be the parent your child needs. 
You feel guilty for getting frustrated with his ceaseless chatter about nonsense. 
You feel guilty for resenting this disability that has turned life as you knew it on it's head and will continue to be foremost in any family decisions in the future. 
You feel guilty for getting frustrated with your child, because sometimes that stress presents itself in ways that make you wonder who you have become.
You feel guilty for insisting that your child have a small life even though it is in his best interest, because you know keeping his world small, means he is easier to care for.

All these reasons, plus a host of others make it incredibly difficult to explain what it is like to parent a child with FASD and from the inside looking out, it would make all the difference if only you could. 

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