This post was written by my friend:
Urban Servant: Living with FASD - The Trouble with Sharing our Concerns....
I think it is great!
Tuesday, April 28, 2009
FASD and other misunderstood disabilities...
When a well meaning friend who has a typical child says, "My son used to do that when they were that age.." while my son with FASD is falling apart because I put his cereal in the wrong bowl, I often want to shut down or lash out. "But did he rage with this intensity, with this perseverence, and with this sense that the world is going to fall apart if things don't go back to the way he needs them to be????" I sincerely hope not.
In my experience, when your child's brain is wired differently, you just know it. I have watched the same behavior in two different children--but clearly could see the difference between a normal kid and abnormal thinking by a child who has been effected by disability.
So, if you are parenting children who may be intense but have normal developing brains, I ask of you one simple thing. Trust us. Trust that we do know the difference in our own kids. Validate our feelings and understand that we first of all...no matter what...see our child..not their disability.
We don't see them as their disability..we don't see them differently because we are acknowledging that they have lifelong struggles that may or may not be overcome. At times, it may seem that we are focusing too much on their struggles--but we are processing and grieving and working to advocate for their needs--and often their needs are not even "seen" by others. Imagine that maddening that can make a person!
Remember, that to us, a diagnosis does not change our love for our child--or maybe it does. For me it deepens and strengthens love that is not bourne of us. That is part of the gift God gives us when we are asked to parent our kids with FASD and other disabilities...our "momma" fierceness comes out and our love strengthens and deepens so that we can weather the storms that will crash through the walls of "normalcy" we thought we might be getting in life.
So, even if you don't understand, and if you don't "see" the things we are seeing in our child, please, trust us. Believe us. We are not overreacting or trying to get attention. We are struggling.
We are thriving...usually in the same day or even the same hour. And if you want to support us, please acknowledge our feelings and remember that we are proud of our child with the same intensity that you are of yours--even if their accomplishment may be small. Our joy just might be found in the smallest of things...like actually eating the cereal out of the wrong colored bowl..
In my experience, when your child's brain is wired differently, you just know it. I have watched the same behavior in two different children--but clearly could see the difference between a normal kid and abnormal thinking by a child who has been effected by disability.
So, if you are parenting children who may be intense but have normal developing brains, I ask of you one simple thing. Trust us. Trust that we do know the difference in our own kids. Validate our feelings and understand that we first of all...no matter what...see our child..not their disability.
We don't see them as their disability..we don't see them differently because we are acknowledging that they have lifelong struggles that may or may not be overcome. At times, it may seem that we are focusing too much on their struggles--but we are processing and grieving and working to advocate for their needs--and often their needs are not even "seen" by others. Imagine that maddening that can make a person!
Remember, that to us, a diagnosis does not change our love for our child--or maybe it does. For me it deepens and strengthens love that is not bourne of us. That is part of the gift God gives us when we are asked to parent our kids with FASD and other disabilities...our "momma" fierceness comes out and our love strengthens and deepens so that we can weather the storms that will crash through the walls of "normalcy" we thought we might be getting in life.
So, even if you don't understand, and if you don't "see" the things we are seeing in our child, please, trust us. Believe us. We are not overreacting or trying to get attention. We are struggling.
We are thriving...usually in the same day or even the same hour. And if you want to support us, please acknowledge our feelings and remember that we are proud of our child with the same intensity that you are of yours--even if their accomplishment may be small. Our joy just might be found in the smallest of things...like actually eating the cereal out of the wrong colored bowl..
