Monday, January 2, 2017

Parenting Accordingly - Life With FASD


Joseph and I are having a tough day partly because I haven't figured out where he is cognitively. Like many afflicted with FASD, Joseph functions at a different level every day. It is our job as his parents to figure out where he is at cognitively and emotionally and parent him accordingly. He has four basic types of day's and we can usually see what kind of day he will have within moments of his waking.

Exceptional Days:  On exceptionally good days, I can give him a job out of my line of vision and know he will be safe. Jobs such as taking the trash to the basement can be dangerous because I cannot see him to redirect him if he would say, see the tote of empty tin cans and decide to play with one. He can go outside with Tristan and help him with his chores or ride his bike. The only hard thing about this kind of day is that Joseph is aware that he has disabilities and he tries hard to relate appropriately with his peers but still falls short.

Good day: On these days, I can give him a command and expect that it will be followed through. On good days, he can play with Lia, dress himself correctly, empty the dishwasher and play with all of his toys at once. He is happy to play house with Lia and has all kinds of ideas of things he could make. He is happiest on these days and we treasure them.

Medium Functioning Days: On these days Joseph needs to be prompted to keep his mind on eating, I may have to help him "find" his clothing and remind him he needs to wear a coat to go outside. He can follow a simple command 50 percent of the time but I need to be sure and follow up with him. I need to give commands in as few words as possible and be ready to counteract a meltdown at any moment. Rages happen on these days but he is able to rebound and come out of them well enough to continue on with his day.

Tough Days: These days aren't easy for anyone. Joseph can't do much of anything without constant redirection. I keep him in line of vision ALL the time. We have to remind him to chew his food, to use a spoon to eat soup and if he has a large water glass we fill it part full and remind him to use two hands. These days are the ones when we see the most rages, Joseph cannot understand his world and he is totally overwhelmed by life in general. His usual favorite pass times frustrate him and we all breathe a sigh of relief when bedtime rolls around.

Then we have days like today where he is all over the place emotionally and physically.  His mouth is nasty but I cannot figure out if it is because he is functioning so well he is aware of his limitations or if he is not able to process what is going on around him, leaving him angry. I am guessing he is anxious about going to school tomorrow after 10 days of vacation but he won't or can't talk. He gets into trouble the moment I turn my back and nothing I suggest is a good idea. He is cross at me because he views me as the source of all his problems. If I would let him do whatever he wants, he would be happy, at least that is his reasoning.

This variation of abilities used to frustrate us. If he can clean his room one day why is he unable to pick up the papers on the floor the next? Sometimes I could tell him to get dressed for school and other days I had to monitor him every step of the way. When we learned this is typical for those with FASD, we adjusted our expectations to his ability and we were thrilled to see his tantrums lessen. We realized he throws most of his tantrums when he is frustrated and overwhelmed with life. Many times when he acts out, it isn't because he won't do something but because he can't. Keeping that in mind makes all the difference for me. 

Here is an awesome link for behavioral symptoms and accommodations for Fetal Alcohol Sprectrum Disorder. Thanks to a friend on one of my support groups for bringing it to my attention.
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