Wednesday, May 27, 2009

You've come a long way baby!

I remember it well. The first ever IBM Portable Computer - the IBM 5155 circa 1984. I remember it because my mom worked for a company that sent one home with her when I started college in 1989. It was cumbersome. VERY cumbersome. Of course it was also DOS back then, and the matching printer? Remember the spool fed paper? Yep, one of those!

After I graduated from college I worked only on computers at work. I didn't even own a computer in my home until 2000. Desk tops. Clunky heavy ugly desk tops. Back then I was addicted to IBM. I don't know why.

Now, we have 3 desk tops (one Dell, one IBM, and one Gateway [my moms company donated it to Mantha when mom died. It was her computer at work. Of course that was 8 years ago, and moves slower than a turtle in a blizzard, but I cant seem to part with it]) at home, two laptops (one is Mantha's - IBM, one is mine - Dell), and next week, we will be welcoming my Mothers Day, Birthday, Christmas for the next 5,000 years pretty little pink beauty...

I am a brand shopper. At some point I changed my mind and decided I liked Dell better. There are arguments on all sides - Mac, Dell, IBM, Toshiba, etc, but Dell has yet to do me wrong - and they have lovingly financed all 3 of my purhcases - past and present - with a 12 month no interest, 6% interest after that account. So by Christmas my present should be paid off.

I went a little crazy... (hush now Pally, you are the one on the good drugs...) 5X the memory in my current lap top, better productivity software, WRITEABLE DVD/Blue Ray - look out Napster, you ain't got nothin' on me (BWAHAHA!), and PC Link so I can transfer over my Microsoft and Photo Shop without re-purchasing them. I ordered the 17" screen in case you are wondering... because I am old and going blind and all. And I made sure that there was a 10 key because the numbers at the top of the keyboard are dead to me - I am too clumsy to use them - much like punctuation - I always have to go back and edit my work!

I can't wait until she arrives. I have a cozy little corner ready for her arrival, complete with a Tiara and pink lipstick.

And since its all about me ya know, I do have to admit that I said I 24 times in this post.
Sue me! Bwahahahaha!

Tuesday, May 26, 2009

I am feeling better today - actually I have been feeling better. Sometimes you have to get the crap out so the resolve can come in. And the resolve is here. There is no avoiding anymore, because if I do, then any future failures are all on me.

I have been working on schedules and plans to keep her busy, but not too busy. Keep her under supervision but not feeling like we dont trust her. Coming up with projects she can do with me at my office - because she loves working at my office - this summer, and "helping" my friend Jennie at her daycare - which translates to, Mantha thinks she is helping, when really we are having her "visit" a few hours each morning.

I talked to school again today, and also talked to a friend who is very versed in petite mal seizures and we have decided we are still going to have Mantha tested for them. After the initial conversation last week they fell off the radar - or at least what I was comprehending in the conversation. That is why they called today - to make sure I knew that they still agree it may be part of the issue.

So I called the pediatrician this morning to see what we need to do to get the ball rolling, and the first step is a sleep deprivation study. We are scheduled to have the study done with the pediatrician she used to go to in Minneapolis in August. They were not concerned about getting her in sooner, and were confident that unless we noticed serious issues, there was no reason to rush the study.

So that is that. Its not the end of the world. Its just a big fat sassy slap in the face.

I received two emails and one comment recommending reading "Welcome to Holland". The comment was to "re-read" as she knew I already knew the story.

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

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.