Thursday, July 20, 2017

A Day In The Life -Living With FASD

A day in the life of a parent who's child has FASD.....

You schedule appointments, keeping in mind that you will need to find a suitable babysitter for your child, or bring him with you.

You have to be by his side as he pours his cereal because he has no idea how much cereal (or any food for that matter) he can eat. If you let him, he will fill it brim full with cereal and make a mess when he pours in the milk. Every. Single. Time

You have to monitor his bathroom usage because you never know what will go down the toilet. His, "Out of sight, out of mind," mentality can cause no end of trouble.

You pick up the pictures he drew on scraps of paper and gaze in awe at his ability to draw, then smile when you remember that his birth mom loved drawing as well.

You cringe when you move his bed away from the wall. You never know what you will find, be it empty snack wrappers, dirty undies, wads of chewed paper, or worse.

Your adrenaline begins pumping when you hear his voice reach a certain level, you know a melt down is imminent if you don't intervene.

You smile as you watch him interact well with a toddler, but feel sad that he cannot do so with his peers.

You keep protein on hand for those times when he is dysregulated. Sometimes water and protein are all he needs to get him back on track.

You shed a few tears when friends invite you over, and you know you can't go because your child got to bed late one night earlier in the week and you will pay dearly if you delay bedtime again.

You hold tightly to his hand as you walk through the grocery store and ignore the looks of fellow shoppers.

You are thankful your child looks as healthy as he does, but sometimes you can't help wishing his disabilities were a little more visible. Maybe then people would be willing to show him more grace.

You wish the rest of the world could be as loving and forgiving as your child.

You are tempted to hang a sign on your child stating, "Do not interact with my child, it over stimulates him. Do not give him treats without asking, I need to monitor his sugar." Even that small piece of candy can be enough to make his eczema flare.

You hide in the bathroom and sob out your frustration, ask God for grace and patience to handle one more melt down, one more scream, one more moment with this child. When you come out of the bathroom your child gives you a hug and says, "I love you mom, I am sorry I made you sad," and your guilt knows no limits.

You cringe when another well meaning person says, "Look at you, you are growing so big! What grade will you be in when school starts? Are you excited?" You sense your child's dysregulation rising with each word. You hold your breath because you know he is going to spill out a barrage of words plus you will most likely have a melt down on your hands after the person has moved on.

You constantly fear someone is going to pull your child aside and ask questions about his home life, because you know your child will say whatever he thinks the interviewer wants to hear. Knowing how much pain this could inflict on your family makes you extra cautious, which makes you look even more paranoid.

You will crawl into bed at the end of the day, thankful to have made it through another day while praying for grace for the coming one.

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