Wednesday, January 28, 2009

Signal Strength is Excellent

The connection between a mother and her child is mystical. As I lay next to my sick daughter listening to the coughs racking her body, I begin to feel as if I can cough for her. I feel my chest tighten, and I cough with a strange sensation that doing so helps her respire. I clear my own throat to the sounds of the rattle in hers. I can't help it...I can't not do it. It has been predetermined in my genetic code to act this way. I am a mother.
At times the connection feels physical. A ghoast umbilicus. A tug in the center of my abdomen; somewhere very deep.
In times past, when Nixon was having breathing difficulties, I would feel my own respirations become shallow. I would wheeze along with him, both of us sitting up at 2:00 am wheezing away like a couple of old accordians.
It is 4:18. Normally I would be rising for work soon, but not today. The alarm has been turned off. My sick daughter lies next to me, the syrup and the Vicks have begun their duty and the time between her coughs extends. Her breaths regulate and she drifts off to sleep.
I lay awake wondering if when she is older if I will still feel the tug. When she calls home from university with a frog in her throat, will I still clear mine? If she coughs from accross the world will I have ghoast coughs? Does the signal strength fade with distance...with time?
I close my eyes. I decide to sleep, knowing that at least for now the signal strength is excellant.

Thursday, January 22, 2009

The Dark Side

Before I post about our fabulous Disney Cruise, there has been something weighing on me that I need to get out there to feel better about.
When you have a child with a developmental disability, there are alot of things going on internally with that child that are not apparent on the outside. To the average viewer (person), he appears to be a normal almost four year old. His behavior and cognitive understanding of what is acceptable, unfortunately, is closer to that of a two and a half year old. You can not SEE this difference, but it is there.
As a parent, you have to make the choice to bring that child into situations where you know there will be a problem with their ability to function "normally" in that environment. Even though you know (and have been told by clinicians) that forcing this child into environments outside of their norm is good for them, you also know that doing so will be exhausting both mentally and physically to you as a parent. It also can be frustrating to those around you who may not know or understand all of what is going on "behind the scenes".
We have been in many situations where Nixon is having a hard time. He is very quickly overstimulated, and outside of his comfort zone this will sometimes manifest itself in violent behavior to those around around him as well as himself. He will hit, spit, bang his head, kick, or throw things. He has a very difficult time controlling these outbursts. To the outsider, he looks like a naughty boy and we look like bad parents. To us, he looks like a child in pain internally. He is acting out because he is past his comfort zone.
The dark side of this is when these things happen, and you get the comments and dirty looks from people, your first reaction feels like you need to explain him. Tell the people that he is "special" and all those words. I don't do that. I would prefer they think I am the one with the problem. That Nixon acts like a monster because its a parenting problem. Sometimes I wonder if I do this out of wishful thinking. Disciplinary problems can be solved after all.
The other aspect of this dark side is that sometimes you pass on experiences with your child because you simply do not have it in you to handle it that day. You are simply too tired, or too hurt from the last time.
The cruise was a wonderful, valuable, and educational experience. We learned alot about what his capabilities are when he is totally removed from his comfort zone. We also learned alot of our ability as far as making it easier on him. I think we pushed him too far a few times, and his actions caused me to loose my temper and hurt the feelings of some around me. For this I am regretful. Do I regret the trip? No Way. Will we continue to urge Nixon outside of his comfort zone? Definitely. Will it always be pretty? No, but life never is.

Monday, January 19, 2009

Disney Cruise

Still unpacking - I'll post for real later!!

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