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Wednesday, January 14, 2015

FASD

FASD (Fetal Alcohol Spectrum Disorder) is hard, frustrating, preventable, it involves brain damage, rages, pain, regret, sorrow and even joy. A group of mom's shared what they find most difficult when parenting children with FASD. They gave me permission to share their responses on my blog.

- The broken heart of knowing what might have been and the pain of knowing what my child was robbed of
- The need to protect other family members from impulsiveness/bad choices
- Teachers, professionals, family etc who do not understand FASD. They haven't researched it and are unable to handle my child yet they judge my parenting
- Unpredictability
- No longer being able to be a part of society. We feel like we need to exclude ourselves from parties, events, gatherings, shopping etc. We were always a couple who did everything together now we have to take turns. Our child cannot handle social situations and we cannot leave him with a babysitter.
- Trying to figure out how to get him out on his own
- Outsider judgement
- Figuring out how to get him to make good choices and stay safe
- The ignorant outside world where our children are to live someday
- School
- Always having to be alert for tantrums and new fears that come out of nowhere.
- Persevering ...the fact that it is unknown to those around us and having to continue educating them
- Maintaining energy and patience
- The relentless arguing
- Regressions, not being able to trust him, not knowing if he is lying or telling the truth. Fear of the future, but mostly the battle between myself and family who think his diagnosis is just an excuse for his behavior
- The fact that everyone see's how good my child is doing and tells me to back off, not understanding the reason she is doing so well is because I am right here by her.
- The lack of sleep
- Watching my 2.5 year old surpass my 8 year old in abstract thought and comprehension of movies/reading, like being able to predict what will happen next
- The fact that in spite of all we know, this continues to happen over and over again...think of what you are doing to your child
- My children look normal and are expected to act "normal"
- The disconnect. The look of understanding when they haven't a clue what you just said.
- The need to eliminate expectations
- Always walking on eggshells because you just never know what to expect
- Letting go
- Attitudes
- Worry about the teen years
- Lack of support in the school system
- Not being able to make everything ok for my child
- Communication difficulties
- Daily regression, lack of self regulation
- Getting people to understand FASD is a brain injury
- Trying to discern what is brain injury and what is willful behavior
- Needing to constantly watch my child
- Feeling like a bad parent because others just see the behavior and judge

I hope to follow up with posts on how to support families who have children with FASD, how to enlighten the general public and tips to make life easier for both the child with FASD and their parents.

*thanks to each person who contributed, may God bless you with a peaceful day











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