Parenting Children with Special Needs Blog

02/22/07

Living With FAS/FAE

Posted by : Julia Fuller in Parenting Children with Special Needs Blog at 01:26 pm , 466 words, 159 views  
Categories: A Day In the Life of FAS / FAE
spider webI’m the worst mom in the whole world. Have you ever had one of those days? I lost my temper, yelled at the kids and basically acted like an idiot. How many times had my daughters’ therapist asked me the same question, “Would you get angry at a quadriplegic for not getting up and running when you told them to?” “Of course you wouldn’t, and you can’t get angry at your daughters for not remembering how to do, or what they did yesterday.” Then he’d go into the whole spider web theory again. You’ve probably heard it too.

A child with FAS or FAE has problems with brain function. It’s kind of like a spider web; they’re going along fine on one of the strands of the web and then suddenly they’ll just drop off into one of the holes.

There’s no telling how long it might take one of them to climb back up, figuratively speaking of course, onto one of the strands of the web again. “Really Julia,” he would say, “you should be thankful that your daughter had two really good days last month.

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Remember those days are not the norm, just sort of the little life preservers out in the middle of the ocean that you can grab onto once and a while to keep your sanity.”

Ok, so logically I do know all of that and how many hundreds of hours of training in related topics have I attended in the past fourteen years to maintain a foster care license? I’ve heard the whole speech said by some of the best trainers, psychologist and foster parents that there are.

So why did I loose my temper? Why do I sometimes subconsciously think the behavior was totally calculated to irritate me and throw my day into turmoil? Why would I think that she purposely did all of her homework wrong, just to irritate me, so she could turn around and do it all again?

Could it be that I’m human and some days are even too much for this super mom? Maybe it has something to do with the fact that super dad II and I haven’t had a night out away from “cheaper by the dozen” in a month.

Sometimes I think that having my tongue permanently removed might be the key to better relationships with my relationship challenged daughters. Grin.

So I’ll go and ask for forgiveness, pray for God’s help with the rest of the day and tomorrow, and keep trying to get it right. Then I’ll see what night super babysitter is available so super dad II and I can get some adult time away to relax and reprioritize and refocus.

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Comments, Pingbacks:

Comment from: Lauri [Member] Email · http://adoptive-parenting.adoptionblogs.com/
I had one of those days today.... its hard sometimes
PermalinkPermalink 02/22/07 @ 16:14
Comment from: Theresa [Member] Email · http://adoptive-parenting.adoptionblogs.com/
Loved to hear your thoughts - having MANY of my own over the last few days. Of all the disorders attached to kids in my house, FAS/FAE really are the most difficult for me to keep a constant understanding of...if I'm gonna lose my patience, you can be pretty sure it was with one of my alcohol affected childs' behaviors.

It made me feel more "normal", reading your words. Thanks for that.
PermalinkPermalink 02/22/07 @ 17:49
Comment from: a04toyou [Member] Email
I have seven children at home and the one with FAE is more work than the other six. I get so angry with myself when I make some sarcastic remark to her or make her the 'butt' of a joke. Most days I can hold it together....but the days she wears my patience thin, I end up feeling so bad. She really is such a sweet girl, but her choices are still those of a 4-5 year old....and she is 12 years old. I too like Theresa feel more 'normal' reading your words. Thank you. Elaine
PermalinkPermalink 02/22/07 @ 18:48
Comment from: condo-mom [Member] Email
It's terrible to say it, and even worse to live with a Mom who feels it -- but wouldn't life be easier for Joy if she just LOOKED like she might have a difficult time with practical or academic task? Couldn't she just not get it EVERYday, instead of 95% of the time? Really it's her fault for looking so capable and being inconsistent !! And put like that, I guess I end up laughing at myself and being thankful for the 5% !!
PermalinkPermalink 07/12/07 @ 10:54
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