Friday, December 30, 2016

Inability To Self Regulate - Life With FASD

Parenting a child with FASD is challenging for many reasons one of which is, every person is affected differently. The level of brain damage is affected by the quantity, timing and frequency in which the developing brain was exposed to alcohol. This means no two people are affected the same way and what works for one will not necessarily work for another.

Since everyone is affected differently, every parent or caregiver must figure out what works best for the person in their care. And that is where my struggle comes in. Joseph's brain damage is in the area of his brain that controls emotional regulation among other things. He is like an infant, he regulates himself off of other people. He needs someone to constantly control his emotional stability and keep him on track otherwise he will regulate himself off the other people around him. His peers will automatically keep their excitement in an acceptable range, Joseph has no such ability to self regulate. His excitement will keep building until he is either out of control or he melts down in tears or rage.

A child without brain damage learns from past mistakes and when he comes upon a situation where there is a high energy level, his brain will say, "Wait, I was in a similar situation and things didn't go well, I will have to do things differently." Joseph's brain doesn't do that, rather it proceeds down the same road and he has the same reaction time and time again. We used to become frustrated wondering, why doesn't this boy learn? Then we heard about FASD and realized, "Joseph isn't being stubborn, he is unable learn from past mistakes like you and I do."

FASD has been a steep learning curve for me, it yanked me out of my comfort zone and demanded I do what I know is best for my child and leave all my people pleasing, hide in a corner and don't raise any conflict tendencies in the dust. Very few people understood the new regulations we imposed upon those relating to Joseph and I had to open my mouth and explain why in a way that made sense when I wasn't even sure of the "Why" myself. All I knew was it worked and Dean was behind me 100%. 

"Doesn't he feel left out," is the question we are often asked in one form or another. The answer to that is, "No," and the reason is complex. Joseph's brain is damaged in such a way that he functions at half his chronological age. He just turned 9 so that means he thinks and behaves much like a child who is 4.5 years old. So while his peers are off playing kickball, he is quite content to play with his truck and blocks because they are "age appropriate." While he enjoys playing with other children, his brain cannot process multiple conversations, block out noise and play in an organized manner all at the same time. Our brain does this effortlessly, while his goes into hyper over drive and it all falls apart time and time again. At the same time, on his good days he can hold it together when he is away from home but woe to us when we are in the safety and familiar surroundings of home! 

Our goal is to provide a setting where he can enjoy life to the fullest with the least amount of over stimulation. This means very few activities, a good deal of down time, going to bed at 7:00 to ensure he gets 12 hours of sleep which is vital to his ability to function and lessen melt downs the next day, providing the sensory stimulation he seeks such as chewy beads and physical exercise as well as parenting him "age appropriately" which may look very odd but is entirely necessary for him to feel safe.

This chart has been exceptionally helpful to us in understanding the why's and wherefore's of FASD such as why Joseph can carry a conversation that sounds so intelligent when in reality he has little idea what he is saying. 

skill/characteristic                               developmental age equivalent
chronological age                                                    eighteen
physical maturity                                                     eighteen
developmental level of functioning                          nine
daily living skills                                                       eight
expressive language                                                 twenty three
receptive language                                                   seven
artistic ability or other strength                               twenty nine
reading decoding                                                     sixteen
reading comprehension                                           six
money and time concepts                                       eight
                                                                            -National Organization For Fetal Alcohol Syndrome

If you want to learn more about FASD check out the link where I found the above information. They have some incredible resources!

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