Thursday, April 29, 2010

Changes

Taylor prom I’ve been a crying mess the last few days when I start talking about Taylor’s graduation with her teachers.  I’m not the only one.  They are crying messes too.  They said they are going to miss her sweet smile and her constant cheerfulness.

You would think I would be ecstatic about my profoundly developmentally disabled child graduating high school and I think a part of me is.  However, we embark on a whole new journey of learning to trust.

When I said my non-verbal Taylor off to school, I have no worries that anyone is mistreating, ignoring, or doing anything else negative to her.  She can’t come home and tell me about her day.  I have to rely on those teacher who I’ve come to know and love.

After graduating, we have to find a program that has things she can do.  Also, because of her seizures, she requires constant supervision, so she can’t just be '”turned loose” in a work program. 

I’ve picked the program I think best suits Taylor and her teachers agree that it’s the best one for her.  Unfortunately, things for Taylor just aren’t as cut & dried as they are for a lot of her classmates. 

So now, Taylor’s cap & gown has been ordered.  She will walk across the stage early so she doesn’t have to sit for a long period of time.  Just writing that brings tears to my eyes.  Change is hard when you have a child like Taylor.  She’s so happy going to school.  I want her to be as happy as that after school.  Maybe it’s just me.  I’m sure Taylor will adjust to the different program.  Anything that gets her out and able to socialize makes her happy. 

Right now, I just know that I’m the one having the trouble adjusting.  It can be hard to have a daughter who remains a perpetual child while growing in chronological age.  The world isn’t geared towards that.  Everyone has to age out of the system and right now, for me, it sucks.

Okay, I guess that was my whine for the month…or maybe week…more likely day.

Wednesday, April 28, 2010

Anticipation

 

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Needless to say, The Bossman and I have been extremely busy since November.  Now while that is great, especially in this economy, we’ve only really had a tiny break and that was going to the hockey game.  While that was great fun, we really need a bigger break from the office & the many, many computers we have worked on. 

I think that is one reason that I’ve tended to let this blog slip.  I deal with so many computers that when I’m done, I don’t want anything to do with a computer at the end of the day.  I’m trying to be a more consistent blogger, I promise.

So, The Bossman has surprised his loyal office “slave” (yes, that’s my nickname in the office *laughs*) with an upcoming 3 day trip.  We are going to to Spirit Mountain Casino.   While it’s not right on the Coast, we are only 30 minutes from the ocean.  Besides, we get to see Penn & Teller!  Can you tell I'm excited?  It will be 3 whole evenings with just the 2 of us.!!!!

We are leaving on a Friday morning and not coming back until Monday.  I'm so excited, i can’t stand it.  All i can hear in my head is that old ketchup commercial.

Only 23 days and counting!!!!!!!!!!!!!!!

Monday, April 26, 2010

Taylor at the Prom

This is Taylor's Senior year. So, I decided she should attend the prom. Now Taylor is very close to her friend Eric who is in her class. They hold hands and get excited to see each other every day.

They have this sweet, innocent relationship that defies explaining. Taylor has only had one other person that she has been that close friends with and that was back in Georgia and her name was Katie. Taylor would always sign "friend" when you asked who Katie was.


Okay, so I called up Eric's mom and asked if she thought Eric might be okay going to the prom with Taylor. She loved the idea. Unfortunately, Taylor is not your typical prom dress type of girl. I had to find one that was comfortable for her and something she would wear. I think I did good.


She really seemed to have a lot of fun. We even had their picture taken professionally at the prom, just like all the other kids. There might have been a twinge of sadness, wishing that Taylor could have been one of the "typical" girls, all dressed up with a date picking her up from the house. But just looking at the smile on her face took away any sadness that I was feeling.

There were quite a few of the typical teens that came over and told Taylor how pretty she looked. It's nice to know that there are some really neat kids at Taylor's school who are kind and compassionate.


Anyway, I just wanted to share a picture of Taylor and her date, Eric at the Jr/Sr Prom. Next, it's graduation time. *sighs*


Monday, April 12, 2010

Overdue Taylor Update


It's been a long time since I've blogged here. I can't really give a reason why. I've started several blogs but never seemed to finish them. Maybe I'm practicing a subconscious form of avoidance.


Last week the school kept calling me and telling me that Taylor was running a temperature. It would start off around 100. They would call me an hour or two later and say it's 100.4 and I needed to come and get her. Anything over 100 requires her to leave school.


Of course, Taylor didn't want to come home, she loves school. This is her last year and I want her to get every possible day she can in. On Thursday when they called, I drove over to the school, signed her out, and then went to her class. The teacher said, "look, Taylor isn't acting sick and we know she has a problem regulating her body temperature so she can stay if you're all right with it". Well, that works for me. I told them to stop taking her temperature unless she is acting sick. *laughs*


Taylor was sick a few weeks ago with pneumonia again. I was telling "The Bossman" that Taylor was sick and he looked and me and said, "you know she isn't "sick" really, it's more like she just isn't doing well anymore". Well naturally I started to cry. He's right, but I keep telling myself that she is sick because that implies that she can get better and we all know that isn't going to happen.


She's happy and I guess that is the most important thing. She's stubborn and a fighter so she just keeps chugging along, doing the things that give her joy. She just keeps smiling through it all.


She has a 3 hour test coming up next week because of the poor circulation on the left side of her body. They need to figure out what's going on there. They have a hard time getting a blood pressure on her left side and her left foot and ankle stay swollen all the time. I'm hoping it's just another case of "Tayloritis" (anything that stumps the doctors is called Tayloritis). Sometimes I much prefer that than something serious…if that makes sense.