Friday, October 30, 2009

Refusing to be Politically Correct About Disablities

I've been meaning to write this post for awhile now. I just haven't been sure how to approach it. It's going to be very anti-pc. Of course anyone who reads my blog knows about Taylor and that she is profoundly developmentally disabled. That's a pretty long title but it is the politically correct way to describe Taylor. However, we who love her call her something else. No it is not the dreaded "R" word but I will admit that it is a variation of that one. It's one we find endearing to us.

Now, I realize there are going to be a lot of people that might be upset or horrified that I would use this word in talking about my child, but she is my child and I would never call anyone else's child by this name. I'm sure it helps matters for me that Taylor has no clue about the meaning of this word or even the above phrase…profoundly developmentally disabled. I'm just going to go with PDD from now on. Anyway, Taylor knows tone of voice. You could say the vilest curse words to her and if they were said in a sweet loving voice, she'd smile and laugh.

I'm sure you are wondering by now, what word could her family possibly be using that might offend you. Well, just the other day, we told Taylor that she will be the most popular tardy in her class today. I'm sure some of you sent up a collective *gasp* after you read that. Yes, I do use that word with my child. Partly because of the origin, which is too long to share with you on this post, but also to thumb my nose at everyone expecting me to keep up with whatever the most pc word of the year is when it comes to kids/people like Taylor.

Also related to the above issue is that, as The Bossman says, I do know how to play the "gimp card". Now before you really get angry at me, let me explain. The Bossman and I have been together for over 3 years now. 25 years ago, The Bossman was a cop in California. Unfortunately, an off-duty diving accident made him a paraplegic. I've never known him without the chair. Our first travel trip together really opened my eyes to how inaccessible things really are. We booked a "wheelchair accessible" hotel room. Guess what? We got to the room and The Bossman couldn't get his chair through the door. I was told by the front desk that "most chairs" can. I think I stood there with my mouth hanging open. Most chair? Seriously? His chair is less than the ADA required 36''. They were nice enough (insert sarcasm here because they kept telling us how nice they were) to open the room beside it because it had a wider door and let us use both rooms.

Since that trip, I refuse to have to do some sort of awkward shit just to spend the night away with The Bossman. When we went to a casino here on the Oregon Coast…they actually expected me to wheel him down a ramp, in the dark, without railings to keep you from dropping off a short cliff onto the beach, leave him there, walk around, go upstairs, open the main door, go in the room, unlock the back sliding glass door, and let him get in that way. No, I'm not kidding.

When the hotel receptionist told me that, I just looked at her and pulled out the gimp card (The Bossman's term) and played it like a pro. Needless to say, they gave us a suite in the tower with an elevator and a ramp to get in the building.

For those that think that "hey, you got upgraded without having to pay the extra $$", you're damn right. The problem is that I shouldn't have to "play that card". No one should. If you work in a hotel and you get a call from someone who says they are in a wheelchair and CANNOT walk, think about that when assigning rooms. Some think wheelchair means just having trouble walking…not completely unable to walk. We've had some think he could just stand for a second. Yeah…that doesn't really work well with a severed spinal cord.

Look, I don't expect everyone or anyone to understand my use of the word tardy when I talk about Taylor with family members or even when I'm talking to her. But it's my choice, my word, and it's said with more love than you could ever imagine. No, I don't say that word in front of others. Not because I think it's wrong, but because I don't want to make anyone feel uncomfortable or awkward.

This is just my world and I thought I would give you a glimpse of my total un-politically correctness. Feel free to disagree with me in the comments section. I welcome all respectful dialogue.

Now I need to do my "Yes I Did" Friday post.

Monday, October 26, 2009

Continuing Tales of a Bad Knee

I just wanted to jot a quick note to my friends to let you know that I haven't taken time off from the computer…at least voluntarily.

Since my partial knee replacement a few years ago, there have still been some ongoing issues. My surgeon and I are trying what we can to avoid a knee replacement revision as that is a big surgery.

Anyway, over the weekend, somehow I managed to break the blood vessels in that leg and it turned blue and swelled up. It's also very painful right now. Oh the wonders of strong pain meds! So per the doctors and most importantly The Bossman's orders, I'm relegated to sitting on the couch with my leg propped up and iced for at least the next few days.

I just didn't want anyone to think I'm such a mental mess that I needed more mental health days away from the computer. *laughs*

Saturday, October 24, 2009

My First Video

Okay, so The Bossman got a new video camera. Today was the first time that I used it. I decided to take some video of Taylor after she got home from school. This is the only one I'm happy with unedited, since I'm still learning that.

Anyway, I hope you enjoy getting a glimpse of Taylor.

Friday, October 23, 2009

Yes I Did Friday!

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes, I took a 10 day break from the internet, only using it for work and important emails. You could call it a "mental health" holiday.

Yes, I acted like a baby when The Bossman and I had a misunderstanding 2 nights in a row. Yes they were my fault and Yes I'm going to deny they were.

Yes I let my grandkids decide what they want to eat for dinner when I watch them even if it is cheese and crackers. It's a Nana's prerogative.

Yes I wrote "Dawn was here!" as graffiti on the inside of The Bossman's model train layout tunnel just for fun. (Third picture down)

Thursday, October 22, 2009

I Just Needed…

I've taken a little break from being online when I'm not working. I haven't written a post in awhile. I just needed the break. I needed to spend time reading my new book, "The Lost Symbol"…yes, it's a fabulous read.

I needed time to help the Bossman with his hobby, model trains. We had fun gluing the Styrofoam for the base of the mountain. I needed some time to play with my grandkids and have lunches with my daughter "B". I needed time to sit and snuggle with Taylor and watch her be silly. I needed to lay on her bed and watch her laugh hysterically at some new show she found on Nick Jr called "The Upside Down Show". If it has "slapsticky" type humor, Taylor laughs.

I just needed some time to enjoy the fact that Taylor isn't sick. Seizing? Always…but not sick. I needed some time to do nothing…to engage no one except the Man I love & the rest my family.

I just needed a break.

I will be posting a "Yes I Did" post tomorrow. After that, I'm going to try and introduce everyone to Taylor by catching her on video. I hope all my friends are doing well and I will be catching up on your blogs…I promise.

Thank you Won for checking on me. It meant a great deal more than I can explain.

Monday, October 12, 2009

The Rest of the Story

Taylor the "Dog Whisperer".

Obviously, I've known about the "Trip to Holland" story that most parents of special needs kids get from someone after their child is diagnosed/born. However, I hadn't realized that there were other parts to it.

A new friend pulled a Paul Harvey on me and sent me "the rest of the story". Thanks Won…you made me cry. Good tears though. There was one part that just seemed to catch my heart.

"So many people think that they are the only one that arrived in Holland against their will, but there are more people than you might think, that have arrived unexpectedly. Too many look, yet only really see their own situation, but if you open your eyes and really see, you will find most everyone has visited some part of Holland at some time in their life. And when they want to find a quiet place of connection, many return here."

I have found that to be so true. There are times when I am so absorbed in what Taylor and I are going through, that I forget there are others that have walked in my shoes to some degree. I have never thought that my situation was worse than anyone else's. I guess I just didn't realize that there are more people who can understand my emotions if I just open my eyes and heart and let them in.

Thank you again Won for sharing that with me. I don't think I could ever find the words to tell you how much it meant.

Friday, October 9, 2009

Yes I Did!

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

"Yes I Did" ignore my daughter's phone call. I have specific ring tones for my daughters, click here to see how appropriate it is for them. Anyway, when I heard it, even though I knew my daughter was having a particularly rough day, I didn't answer it. I needed 10 minutes of peace. However, mom guilt kicked in and I called her back in 5 minutes. I do love her…honestly I do.

"Yes I Did" tell a customer to take their computer somewhere else to be fixed because he was being obnoxious. My man is a well-known and very trusted as a computer repair guy here in our town. We are so busy right now that I don't need to burden him with annoying customers.

"Yes I Did" listen in to a conversation in the doctor's office (well, you can't help it when you are sitting right next to people and they are talking loud). This family was trying to figure out what a certain drug was. You know I'm "almost a doctor" because of Taylor (inside joke certain people will get), I told them what the medicine was generally used for and then told them to discuss the side effects with the doctor.

What "Yes I Did" moments did you have this week? Join in…you'll have fun.

Wednesday, October 7, 2009

Trisomy What?

Taylor @ 2 years old, 3 weeks after her diagnosis.

There seems to be an "Awareness" month for just about everything. Last month was Pediatric Cancer Awareness month. This month is Down Syndrome Awareness month. We have Black History month, Breast Cancer Awareness month…the list goes on and on.

Now don't get me wrong. I have nothing against "awareness" months. Unfortunately, my daughter has such a rare syndrome that she doesn't have a month. Well, actually she sort of does if we lived in Alaska.

Taylor has Trisomy 9p. I suppose we could tag along with the Down Syndrome Awareness month since Down Syndrome is technically called Trisomy 21. They both involve having an extra chromosome. It's amazing what having just one extra chromosome will do. In Taylor's case, it isn't even a whole chromosome…it's just having the extra p portion of the 9th chromosome…which makes it even more rare than if she had the whole extra chromosome.

I hope no one takes this entry as me complaining about not having a month. This is just my nod to those of us with kids who don't have a popular or common syndrome. We don't have a colored ribbon we can put on our blogs or a celebrity spokesperson raising awareness. We get to do that ourselves.

What we do have is a close-knit community of parents who understand that we don't have anyone that understands exactly but each other. Taylor was diagnosed when she was 2 years old. Up until that time, we were out in limbo land. When we got the diagnosis, there wasn't sadness. There was relief. Finally we had a name. I guess when you know something is wrong with your child, it's no longer about hoping the tests are negative and more about hoping it gives you a name.

For those parents who have children that have any of the above conditions, please know that I'm not making light of them. These were just my thoughts for the day. My Taylor always has to be different and she just couldn't have a well known syndrome…she had to go for the rare.

Tuesday, October 6, 2009

Developing a Thick Skin

I've had this topic on my mind for a few days but I wasn't quite sure how to word it. I was reading a comment on a forum written by a mom whose daughter had a birthmark on her face. She was upset that someone had thought to use that situation as an example of a distraction in a school setting. I'm not going to address that particular situation, just what it made me think about.

I'm sure that what I'm going to write about isn't considered politically correct and it may even upset other mothers of special needs kids. However, it's just something I feel led to write. Taylor doesn't look "normal" and she never has. Even when she was little you could always tell there was something different about her. As Taylor was growing up, we dealt with stares and rude comments and I will admit that my feelings would be hurt a lot. I would get angry and lash out at the insensitive or unfeeling person. Of course, it never made me feel any better but I always thought I needed to be outraged on Taylor's behalf because she didn't know enough to "feel the slight". So I felt it for her.

As the years have gone by, I realize that my desire to strike back at rude people has waned. I have read the blogs of some parents with disabled children in wheelchairs who watch for people that park in the handicapped parking spots. Even if these people have placards, this mother will say something if the person doesn't appear to be visibly disabled. I have a placard for Taylor. Is she in a wheelchair? No. So by that mother's standards, I shouldn't park there. To her, my daughter having seizures every few minutes in a parking lot shouldn't mean that we get to park closer. Are there people who park in handicapped spots illegally? Of course…but to demand everyone "look" disabled is ridiculous and shows that ignorance can be found anywhere.

I guess my point for writing this is that after 20 years, I've developed a thick skin. Maybe if my daughter could have hurt feelings or understood things, I would think differently. But she can't. So why should I waste one second on a negative emotion when I can just focus on the silly, happy, child that Taylor is. There are always going to be ignorant and rude people. Don't get me wrong. If someone is just downright ugly about Taylor right to my face, then yes, I will say something, but i've learned to let the negativity roll off my back.

I hope that I've worded this post in a way that people understand what I mean. Taylor doesn't need me to be outraged on her behalf. She doesn't give a rat's ass…so neither do I.

Sunday, October 4, 2009

Take a Guess!

This is my youngest granddaughter Ally. She is a gorgeous little red-headed angel. Okay, I'm Nana, so I can fib a little. While she is precious and I love her beyond words, she does have the temperament that goes along with the red hair. This is a picture her mother, my middle daughter, took of her.

I took this next picture of her after she put on my glasses. I want to know if anyone else can tell me the movie character she looks like. I don't have anything to give away, but I would love for you to leave a comment letting me know what character you think she looks like. I know who I think she looks like. *laughs*

Friday, October 2, 2009

Yes I Did!

Jeanette started "Yes I Did!" Fridays.

Friday is the day to fess up to doing something that didn't exactly make us the brightest crayon in the box. To own the things we knew we shouldn't have done, but did anyway. Or to share something that we are proud of ourselves for accomplishing! So here is what I DID do this week…

I couldn't figure out how to start this post so I absolutely "borrowed" the above paragraph from Jeanette's blog. Okay, so maybe stealing would be a better word, but Yes I Did!

I most certainly DID tell my grandkids that the Nick Jr channel was going to sleep because it was the opening night of the NHL season and my favorite team was playing. I just had to change the channel. Of course, karma bit me in the butt as my team lost.

I let Taylor eat Apple Jacks for dinner the other night because there wasn't anything else she wanted. I didn't even put flaxseed on it or use organic milk.

I totally lost track of the fact that our business (home) opens at 9am and I was still in my pajamas when a customer came to the door. Good thing I'm a fast dresser.

I also spent so much time reading posts at OHIH, that I got behind in all my other work.

I'm positive that there are many other things I've done this past week that would qualify for this post but I just can't seem to remember them. It would appear that I'm going to have to start writing things down as they happen next week.