Friday, May 22, 2009

Things we never want to hear...

I don't often post about my children.

Sure, when there is something really funny, or really irritating I talk about them more here, but I don't overly share because there is this underlying sense of failure - failure at my relationship with my daughter. In order to not feed on that failure, I don't share a lot about either child so that no one gets the sense that I favor one over the other.

Today that sense of failure was replaced with a sense of fear and overwhelming guilt. Guilt that while I have seen the signs, I did not know there was more to it; guilt that I was punishing behavior that was not in her control. Fear that we are embarking on an adventure that has no end.

My friend Dayna would tell you that I have struggled with this relationship for a long time and probably have been avoiding the truth for even longer. I have made excuses for why I thought it was happening, even blamed my early relationship with my mother. She understands the fear of knowing there really is something wrong, she has held my hand, listened to my gripes and supported me for many many years.

Today she listened again, this time to the diagnosis. Through a text. Because I didn't have the voice to speak it.

For those of you who "know" Dayna, you know that she has been thrown so many obstacles, and fears, and diagnosis', and illnesses with all three of her children. This is so minor compared to what she has had to hear and experience. Yet she still said she was sorry. Still held out her hand, and still offered support.

Today I was told that my daughter has Aspergers. My highly intellegent child cannot tell you why she knows what she knows because she cannot process it. She cannot complete a task without wondering why she started it, or how to finish it. She doesn't understand non verbal cues and cannot process emotion so she takes offense to just about anything that could even mildly sound offensive. She is THE top math student in her class. She even outranks many of her upperclassmen. But she cannot complete homework because she cannot put to paper what is in her head. She does not process process.

She has been reading several grades ahead of her peers since pre-school. She can spell better than most. But she cannot write an essay or spelling words correctly. She is not dislexic, she just does not have the same ability to process the work from her mind to paper that most of us do.

She gets straight A's on her tests. She fails on her homework. Why? Because most tests are multiple choice. She knows the answer, but she doesn't have to explain it. She only has to select it.

She is however highly artistic. Incredibly so. She is very creative. She can write poems and fantasy because there is little problem solving. There isn't a process. There are just words that sound nice together, and her works are amazing as seen in this post. Her pencil drawings are so realistic that you would think a highly professionally trained artist drew them.

But, she cannot complete more than two commands in a row. She has to stop, cross it off a list, and move on. If verbally told to do a series of activities, 7 out of 10 times she will not remember most of them. She does not understand how to finish an activity - ie: when she puts clothes away and runs out of hangers, she does not look for more hangers, because once the hangers she has are gone she believes she has completed the task. The clothes are not the task in her mind, the hangers are. When she vacuums she does not put the vaccuum away. Not because she is lazy, but because the act of vacuuming was the task, and once done with the task the rest does not process.

All of this was enlightened to me today. I always thought she had lack of concentration, or didn't care about the task she was performing, or was lazy, or even that she didnt pay attention to detail. We are always asking her to finish what she starts and not do it half way. She has always told us she didn't know she hadn't completed the task. Today we were told why.

There are many things we never want to hear as parents. There is a difference between knowing there is something wrong, and hearing there is a name for it.

As I educate myself more on this Syndrome, I find that there is a lot of fear read into much of what I am finding. The biggest fear is that Aspergers is a highly functioning form of Autism.

In preliminary IQ testing, she is testing way over 100 - close to 150. They expect that when she is actually tested this fall, she will fall closer to 180. Knowing that she is highly intellgent makes this harder. Knowing that social and common sense skills are very low is even harder. The things that I thrive on are the things that she will never possess.

It will be a long and bumpy road, but we will get through it. She is healthy otherwise. She is beautiful, and she is kind, but there is something that isn't there, and that is what breaks my heart. That vacancy in her eyes, that lack of true emotion, knowing that she has to force herself to laugh or cry not because she feels or understands the emotion, but because she see's others experience it, and she believes it is what she must do.

I love her more than she will ever understand. I hope one day she will. I hope one day the frustration that has built a wall between her and I will crumble and a new understanding and acceptance will take its place.

I wish for harmony and peace and love. No more guilt, no more fear, no more failure. No more withdrawing, stronger self esteem, and a future that is bright and makes sense.
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