Saturday, August 12, 2006

On Sweetness

This is Alexa. She is my oldest, and probably my sweetest child. Now before anyone starts to think I am playing favorites; let me explain: She is what you call, "special" or oh
"different?" She is multiply handicapped ok. But don't tell her that. To me, she is just plain SWEET. She does have her moments, like the rest of them, don't get me wrong. For the most part, this child is an absolute little darling. And sweetness really does depict her title.

Alexa has a few other, rather ugly titles, that I may as well get out of the way; but they do NOT define her, by any means. She has Cerebral Palsey. Mental Retardation. Epilepsy. Central Motor Retardation. Autism. She sounds simply terrifying, doesn't she?? To some, yes. But not to those that truly know her.

She has defied obstacles higher than most adults, really. When she was only a wee little thing of 6 months old, her Daddy and I were told that, "she would never walk, never talk, that she would be nothing but a lovely wall flower. Perhaps an institution would be best." At 6 months old. How does one deciper that in an infant?? We just looked at her, whether it was denial or love, and refused to believe it would never take place; we left with our baby and made other arrangements. I would bring her to Physical Therapy three times a week for the next year, to get her chubby (fat) legs and tummy muscles into shape. She started with a program at 18 months, with Occupational , Speach, and Physical Therapy as well as a teacher who would come to our home; they worked with her four days a week. To her it was more like play, for me, it was watching this sweet little girl making strides that I was told she would never make. At the same time, I was watching my neice and my girlfriend's daughter accelling at a rate of speed, that seemed like that of a Nascar driver. When Lexi was in slow-motion in comparison. But we were happy for all of them, each for their own individuality, their successes. And especially for Alexa's strides as she made them.

On her first birthday, she was able to sit up, unattended for the first time! And we got the picture.

Of course, it took many more weeks before she was able to do it again, but she was able to do it on the day of her party! AND, contrary to the doctor's belief - she also did learn to walk! It took a few years, but she learned. She started with a walker at 3. We took it everywhere. EVERYWHERE!
In this pic, Amy is actually excited for her, but Alexa is mad because everyone is in the way and she can't just GO. She became very fast with the walker. We would take her to the mall, and just let her GO, and people would 'learn' to get out of her way, she was relentless. She didn't have the words to tell them to move, but she would have that, "get outta my way" attitude, if you know what I mean. Her voice would let out this loud growl and she'd get all excited, and run. Her braces went up to her knees, and I would make these padded knee covers for her, because, when she wasn't using the walker, she was actually running on her knees. And this girl could run on her knees. Here she is taking her first steps without the walker, age 4. She was so proud of herself. She has this little way of expressing her excitement, we call it, "flapping her wings," they call it Autism - whatever. Either way, it is Lexi. When she gets excited, she wiggles her arms and fingers like she's ready to take flight, like this:

In this last pic, she had just celebrated her 15th birthday in her new home; yes, her new home. When she was 14, she moved into a group home with 4 other girls, not unlike herself. They are all the same age. I wish I could show pics of these girls, but for safety reasons, I cannot. Their stories are not the same as ours.

My reason for sending my daughter to a home are not so horrific, as some may think. I used to believe she would live with me for the rest of her life. And then she hit puberty, and then, she hit ME! And tried to toss me down a flight of stairs. But that is just the ugly side of her disability. The side I wasn't trying to hit onto. I suppose you don't go ablogging about this without going there. I really did think I could handle keeping her home with me; but I just couldn't. She became something of a nightmare. And at the time, my marriage had dissolved, my life was changing, so I was changing her life at the same time as well as my other children's lives. We were all going through a hard time.

My other kids were wanting to get involved in basketball and cheerleading and school plays and regular activities that kids get involved in at school. And I was always telling them they couldn't "because of Alexa." We could never sit through a play, because she would scream half-way thru and one of us would need to escort her out. Or I'd need to be at a meeting, there was the diaper dilema, the fact that she really just wouldn't tolerate being a 'normal child', can you stand it, anywhere we went.

She became a raging lunatic in my home as well. Nicholas was a toddler, in diapers also. Yes, so was she. They shared a room. In the morning, despite hiding wipes, diapers, powder; she was a pro at finding them, and I would know by the smell as I'd climb the stairs what I was going to find. First, it would be the cloud, the baby-scented cloud that would, no doubt take weeks to clear. When I'd open the door, I'd see the evidence; both she and Nicholas were covered in baby powder - it would be EVERYWHERE. Then she would just scream. Of course, the wipes would be from one end of the room to the other, as well as the dresser drawers, emptied, clothes EVERYWHERE! Then there was the toy box, need I say more. It was endless. This was a daily happening. And of course, she and the baby would have a load in their pants. I'd need to just rewet the wipes from the floor, as there were none in the boxes.

At this point, I'm both pissed and crying. Anxious for the bus to pick her up, and wondering how much more I can take. (No wonder I have Migraines, right!) In the meantime, I have my case worker trying to locate a respite host for the weekends, because my nerves have been frayed and well, I'm about to lose my cool. I remember, very well, thinking to myself, and actually telling Denise, my case worker, "I understand how people can abuse their kids! And I DON'T want to get to that point!"

It was at the same time, this home came into the making - by God's grace, for both me and Alexa. And I believe, for the rest of the girls in the house. As soon as it came about, Denise called me, and I gave her a loud, "YES" and we were on the way to getting Lexi in. It took forever, it seemed; but she is in, and has been there almost 4 years now. I can't believe it as I write it!! It was the hardest thing I have ever done. No, leaving my husband was the hardest thing. This was the second hardest, it tore my heart out. It tears my heart each and every time I leave her still. But I know, without a doubt, that it is by far, the best thing for her.

Frank and I took her to dinner on Friday night. We went to this WAY overpriced dive in B'ville, (which reminds me, I need to write Yolanda about), anyway, she just had me in stitches the entire time. There was a time she called him, "Boink," and now it's "Prank". I'm not sure if it's for fun and amuzement on her part or if she just can't say Frank, but she enjoyed herself.

She is very loud, she doesn't understand "SHHH" or "quiet" and when he asked her to keep it down I told him I didn't care if she was loud and if anyone else had a problem, they could address me. I never, and I mean NEVER have a problem with anyone who wants to address me with those issues. As it was, the geaser behind me let out a FART and didn't have the decency to say, "excuse me," so I wasn't about to let a little retardation get in the way! Nobody had a problem with her.

When she was little, she would get the most adoring "oohs and aahhs", and then she got her first little wheelchair, buggy we called it, and people would stair at her kinda funny-like, wondering what was wrong with her. I have a big mouth, really I do. So I would say, "I know, you're thinking she's adorable aren't you?" They would just get all embarrassed and shocked and say something stupid. Usually walk away real fast. GOOD. So in short, yeah, this is sweetness, Alexa, or as we call her, Lexi. Other than her 'moments' she really is very sweet. She loves Barney, cheese, pizza, potatoes-mashed and about 3 pounds of them! no joke, music, the computer, and the girls are jealous because she has her own in her room, WITH A TOUCH SCREEN, way cool! She loves macaroni and cheese, pasta, pasta pasta, meatblls, chicken, salad, and I'm finding she'll eat pretty much anything you give her now. She can't go anywhere without a 'mirror' which is a small, hand-held etch-a-sketch. It's her thing. She also loves the people who care for her, as do I. Because they do a wonderful job.

I remember when Denise was telling me about the home and what is involved; she said that sometimes her hair may not be as clean as I clean it, or her shirt may not match her pants, but these are the things I need to overlook, as long as she is happy and well-cared for. and she is - BOTH. She is a happy young lady, a very sweet and happy young lady. She is well cared for and very loved. And I know that when I can't take her home becuse I've been ill, she is being cared for. She has one girl, Jes, who takes her to her Mom's to go swimming. This girl works at the home with Lexi. She is wonderful with Alexa.

So that's who "Sweetness" is. Sometimes she's pure onion, but most times she is just plain sugar. Always, she is Lexi

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