Saturday, February 11, 2012

Some days...with FASD

Some days the insanity of a house full of FASD kids seems nearly too much to handle. This whole week has been a really rough one for all of the kids..and then add the stress of a sick brother in the hospital and Dad gone with him, I can't decide whether to scream, laugh or just cry...

I am amazed that our house is still standing. With the sleep disorders in a full rage, I wake up to a house torn apart..no matter how clean and picked up it was when we went to bed. Several of the kids roam all night long..one eats all night, the other eats and tears the house apart. We just purchased three lock boxes to store knives, car keys, meds, electronics, and keys to more lock boxes..even though the lock boxes were sturdy...each and every one of them is broken in an attempt to get at the contents.

Just one morning of casualties include the hose to the vacuum cut with scissors, potholders burnt in an attempt to hold a meat thermometer over the flame of a gas stove, a whole loaf of bread made into peanut butter and jelly sandwiches, 2 quarts of juice drank, 2 cell phones disappeared, cupboard doors falling off, cupboard drawers emptied, dishes everywhere, 3 cans of soup opened and poured into bowls (uneaten), several bowls of cereal and milk uneaten and  poured out into the garbage. Not to mention the unidentified liquid all over the floor which could very well be urine (sorry..tmi?)  And that is just the kitchen. All of this took place in the 4-5 hours of sleep we get a night.

And so, after only a few hours of sleep, it is not easy to face such a disaster in the morning. And then there is the task of getting FASD'ers out the door in the morning for school. Our kids have so many tardies and missing days of school, that I am waiting for the truancy officers to knock on our door. Our mornings start out  like this and our evenings end in a raging 7 year old who is getting increasingly violent and explosive. And in the middle of the days, we must deal with school personnel, doctors and therapists in between dealing with the behavior of the littlest FAS'er in our obsessing about princesses all day long.

All the damage to our home is getting so expensive. The extra food and groceries that are wasted EVERY day makes me overwhelmed. I see dollar signs every morning when I survey the damage.
And then I wonder if any one on the outside really "gets" the cost of this lifestyle. It's costly in many ways.

What makes this all so complex is the sheer numbers of abnormal thinkers in one home. Each of them who have sustained inutero brain damage have their own unique quirks, deficits and abilities...and often times there thinking makes no logical sense.  Listening to a conversation between two of our kids with FASD is maddening...it is the interactions between them that compounds the insanity at times around our house. Today, I have had enough. I am not at the hospital...we are still awaiting culture results for Elijah. I wish I could be with my little guy with autism who seems quite "normal" compared to the whole bunch at home.

FASD is really hard at times. I love each one with a passion and I go to bat for them on a daily basis. They are disabled..not lazy, not uncooperative, not trying to drive anyone crazy. They are disabled. It must be maddening to be them. And I can step away at times... They can't. That's tough. I wish life would not have to be such a struggle all the time for them. I wish there was a medication, a nutritional supplement, a cure for the brain damage...but it's permanent. And sometimes, the permanency of their situation is hard to face. This isn't a week I have been allowed to shade myself from the glaring reminder that they are not going to grow out of this...they aren't "normal" and they never will be.

This life is so hard...I can't handle it..but God can. And I will pick myself up, dust myself off and face tomorrow with just enough strength and grace extended to me from God for each day. He sees the end of this story...and He sees the beauty in the midst of these ashes. I will trust that He has gone before me and this is all for His glory. I will trust with just enough faith for today...

4 comments:

  1. Hi. My name is Krystal. I found your blog some time back while researching RAD and FAS along with parenting. Our 8-year-old daughter was adopted at birth. She has been diagnosed with RAD due to FAS, with ADHD and ODD characteristics. She's really smart and does okay in school, but life is sometimes really hard. God has been working in our lives, though, and we've seen some really good progress in the past month. I stay on my knees in prayer in my heart as a mother!

    So, in reading your blog tonight, I just want you to know I'm praying for all of you. I have just two kids, and many times I'm overwhelmed. I thank God for the heart He's given you, and I ask Him to continue sustaining you and providing for all your needs. And, as my counselor would say, "Make sure you are getting your Calgon moments!!!"

    Hugs in Christ,

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  2. Yes, Julie, you are being lifted up in prayer right now. Oh, how God loves you, how He loves Mark and each of your kids. I don't know how you do it--God's strength and provision must be the only thing keeping you all going. I am praying He pours them out in abundance!!!

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  3. My prayers are with you Julie. I have only two FASD kids and two with other special issues. I know how hard the lack of sleep is on the whole family. Thankfully, our night time wanderer was trained to an alarm at the age of 4 and has respected it all these years. She actually reminds me to set the alarm to her bedroom door at bedtime. I imagine she would do the same as your kids if she roamed all night. She cut up her brothers curtains last week beucase she wanted to make a doll dress while I was making dinner. She has to be watched every minute. Her brother is not affected in the same way at all, thankfully. I pray that you find some peace and that more and more people realize the importance of supporting families such as yours.
    Blessings,
    Dawn

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