The invisible disability

One of my children has an invisible disability. Another of my children suffers from effects of the same invisible disability. This invisible disability is called Fetal Alcohol Syndrome, or FAS. FAS is caused when a mother drinks alcohol while pregnant. We are talking about more than a glass of wine or a sip of beer (though I believe that pregnant moms should not drink ANY alcohol - read on and I will explain why!).

You can read all about FAS online... just google it and you can find more information than you ever wanted! In a nutshell, FAS is brain damage done prior to birth. This brain damage can manifest itself in many different ways. The large majority of children born with full blown FAS have distinct facial features and will have true mental challenges. Not all children will have distinct facial features (hence one of the reasons it is called the invisible disability). There is also a condition called FAS-D... or Fetal Alcohol Syndrome Disorders. FAS-D is basically the same thing as FAS, except it is usually not as severe. I am no expert and am not going to get into the guts of the whole thing - but I wanted people to better understand that yes, it is a true disability.

FAS messes with the brain and brain development. It can and will show up differently in different children. FAS can be the cause of or act like ADHD, ADD, ODBD and many other diagnoses. FAS can also cause the brain the function differently than the "normal" brain. Things like learning delays, behavior problems, memory challenges, impulsiveness, sensory issues can all be more prevalient in kiddos with FAS.

There are alot of people out there that will argue that FAS is not a disability, but a behavior problem. Unfortunately, it IS a disability. Since rarely can brain damage be fixed - it is permanent. While my kids don't have a wheelchair or a walker, are blind or deaf or cannot take care of their own person - they suffer from something that they will always have to live with.

For me - FAS has been a challenge that has been ongoing. It challenges me to parent each child differently. To micro-manage one child, while allowing the other immense amounts of hands-off parenting. It is a daily grind of being one-step ahead of each child and being able to head off disasters before they happen. It has alienated our family in so many ways... one child can't do sleep-overs unless there is immense amounts of fore-thought and planning, one child cannot attend birthday parties without our supervision as he gets too over stimulated and will make very bad choices, playdates are a rare thing unless we supervise it as both boys can do things that make it a major disaster for all, homelife has to be kept on a tight schedule or we end up dealing with meltdowns and bad behavior.
Another challenge for us dealing with FAS is the fact that the children do not truly understand why they do what they do. Often their impulsiveness, and bad choices are very spur of the moment kind of things. For example, about a year ago, the kids and I were walking on a sidewalk along a busy road - we were only going 2 blocks on the way to McDonalds. One child would not listen to me and walk in front of me. Typically, I usually have myself walk closest to the road - holding one childs hand, and the other two walk infront of me. The child in question finally moved in front of me... then decided spur of the moment to jump off the curb about 12 inches or so into the roadway. As I leapt forward to grab him - a car came to a screaching halt about 8 feet in front of him. The whole incident scared that crap out of me - and of course the driver of the car - for if he was not paying attention - would have hit him. These kind of incidents seem to happen more often than not - only on different scales.
It seems that FAS can act differently in different kids. Again - that makes it really hard! When you see a child that looks fairly "normal" doing something off-the-wall... you question what the kid is doing. You see a child that may have a visual or physical disability - you don't question things so much.
Over the last few years, I have had many discussions with friends and people who I used to think that were friends, that related to how "I" parent my kids. Most people accuse me of being way too overprotective, too sheltering, and too strict. I don't feel on many levels that sharing with most people that my kids have a "diagnoses" is appropriate. I would rather people look down their nose at "me" than to put a label on my kids. Some parents are ignorant to the fact that when they say things like "Oh that's too bad that "x"'s birth mother was a drunk - that would explain why...."blah blah, that their children are listening and of course will repeat it.

I hope that sharing a bit of this will help others to stop and think a bit more before they judge!