Monday, December 3, 2018

The Daily Struggle Of Parenting A Child With FASD

    Does anyone else struggle with the intensity of parenting your child with FASD? Maybe it is a personal problem of mine, because I can be floating along providing the structure and support my child needs, and then I get a glimpse into the lives of those who's children do not require mom and dad to constantly be on guard to thwart a meltdown or catastrophic event, and down I go. I can't help but wonder what life would be like if we didn't have to subconsciously be on guard all the time.

Constant Supervision:

He has to ask for permission to use the bathroom -because unless he is in his room, I need to be right by his side or he WILL get into something he shouldn't. 

Ask for permission to flush said toilet -I can quickly forget he is in the bathroom and the longer he is in there, the more things he can and will find to flush down the toilet. On the days when he is dysregulated, I need to check the toilet because who feels like digging unflushable's from a full toilet?!?

Listen to make sure his door latches as he goes back to his bedroom -because he learned if he doesn't latch his door, he can sneak out of said room without my being aware and roam the house.

Check the camera that is in his room multiple times because even though his room is, "Joseph proofed," he can still get into trouble. My biggest fear is that he will accidentally strangle himself because he loves tying things around his neck. And no, he doesn't understand why this is dangerous. He loves strings, rope's etc and even though he is banned from having them, he is sly enough to sneak them into his room without getting caught.

Constant Evaluation:

The three younger children sit around the kitchen table to do their school work. If I need to step out of the room to take a phone call or even use the bathroom, I remind them of our rule, "No talking or communicating while mom is out of the room." Without fail, Joseph will talk or make make motions with his hands to get his sisters attention. When reprimanded, he melts down in tears because, "I was sitting here quietly and you say I was talking!!!" If I tell him I could hear him, he gets a sheepish look on his face and says, "Well, I did talk a little, but it was just a little bit!" There are days when he is accountable and days when his not and I have to constantly evaluate whether or not his brain is functioning well enough to tell the truth.

I can't send him on an errand out of my sight without first thinking, "Is he able to follow directions today?" Next, "Is it safe to let him go down to the basement...what is down there that he might get into? Does he have "sticky fingers" today?" 

As with many people with FASD, he doesn't have a filter on his mouth, what he is thinking comes out, much to the dismay of his siblings (and sometimes his parents). When telling him to sit quietly, we have to take into consideration his ability to actually be quiet. There are days when his mouth runs nonstop, all day long. I often tell him he has to stop talking because my ears are hurting. In actuality it is my brain that is hurting from constantly trying to decipher what it is he is trying to tell me. It is so easy to get frustrated with the continual monologue that flows from his mouth but it is unfair to show that frustration if he really cannot help it. The hard part is figuring out what he can and cannot help.

It is only when I am not responsible for him for a few hours, that I realize the huge amount of brain power that goes into keeping him safe from himself and the world around him. Someone was recently in our home for a visit and commented in an astonished voice, "He takes an incredible amount of supervision!!!" I felt like saying, "This is a good day, you should see him on a bad day." 

Caring for him is alot like parenting a toddler in an 11 year old body.
 A toddler who has no ideas of the dangers in his world. 
A toddler who is tall enough to reach the stove, the counter tops and who thinks child locks were made to dismantle.
A toddler who is too big to grab under one arm and haul out of the way of danger.
A toddler who realizes that other people will give him ten times more freedom than mom and dad, and has no qualms about going behind our backs to attain that freedom.
A toddler who doesn't understand his limitations, but is fully aware that his peers have privileges way beyond what mom and dad allow. His inability to comprehend his world and the gap between what he wants to do and what he is allowed to do, means he blames the very people who are expending a tremendous amount of brain power to keep him safe. 

It often feels like a no win situation and what is even worse, is the realization that while he is growing physically, mentally and emotionally we are only making creeping progress thanks to FASD and a gene mutation. When you know there is no end in sight, when you know things are only going to become more difficult, it is sooo hard to keep your thoughts positive and embrace the life you are called to, Many mornings find me praying for grace, strength and love because I often still feel drained from the previous days escapades.

These FB groups have been invaluable in helping my husband and I understand the intricacies of FASD, as well as providing a place where we can ask question's and share in the humor that only the fellow parent of a child with FASD would find laughable. 

-Parenting FASD Kids

-Flying With Broken Wings

-FASD Caregiver Success

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