My view of the use of the "R" word

At first I heard friends from my DS community talk about how they didn't like the "R" word. I guess I never really thought about it back then and how much it really did affect me. You see that word is used to slam people and well that had to come from somewhere. It came from the term "mentally retarded" which is very close to home for me. Down Syndrome is a form of mental retardation. So when I hear people use the "R" word I see it as a slam to Jesse.

A few years ago Jesse was playing in my living room and a neighbor came over. I can't remember what Jesse was doing, but she looked at Jesse and said "what are you retarded or something?" WHAT???? OMG did you really just say that to MY son? My sweet baby boy. All the sudden that word hit so close to home. I was FURIOUS. I didn't even think to educate her about the use of the word. I just told her to leave before she went flying through my front door. Then all the sudden my views totally changed on people's choice of words.

Since then I've always tried to educate people about the "R" word and why I don't like it. Most people understand right away because they know and love Jesse, but there are some who just don't understand why it's so bad. Well, it's kind of like the "N" word or spic, or any other negative terms to refer to one's race. Those aren't acceptable terms and that is how the "R" word is to us in the special needs community.

For those who know Jesse it's easy for me to explain why it's wrong to say. I mean if you know Jesse you would probably do anything to protect him because you know he's the sweetest, most amazing lil' man ever. I normally just explain it as how would you feel if someone called Jesse retarded? Most of the time the response is I'd kill them, or kick their butt, or I'd be pissed. Well when you use the "R" word I see it as you are slamming MY son. MY pride and joy is the one you are attacking when you so lightly throw that word around.

So please think about how your words affect those around you before you speak. My son can't defend himself, it is up to me to stand up for him. So I'm standing up for my son and I'm saying it's not okay for you to use that word and I will not associate with those who use it.

In Michigan.... Finally

Last week we finally made the move from VA to MI and let me tell you I am sooooo glad to be home. I have spent the past week catching up with family and old friends. I took Jesse to put flowers on my moms grave on Sunday for Mother's Day. I really needed to do that.

I've gotten to spend some time with my younger brother Sean and let me just say I am so proud of the man he has become. Jesse just adores his Uncle Sean and I think the feeling is pretty mutual. Jesse and I also have a new morning routine. During the weekdays my best friend Kristy stops by for coffee.

I had a meeting with the school about Jesse and am proud to say that there is a good possibility that Jesse will be in a General Education classroom because of how well he's doing. I'm so proud of my little man. He is making such great progress in all areas. I'm especially proud of his manners. He can be the most polite little guy ever. He is also talking up a storm these days and I love it!!!! I'm so excited to see how much more progress he will make now that we are here in Michigan and our stress levels are lower than they were in Virginia.

Anyway, it's getting late so I'm going to sign off for tonight.

I'm back and we're alive

I know I haven't been around for a while, but things have been pretty crazy. I don't have much time to post right now, but wanted to leave a post letting everyone know that we are doing well and I will be back to posting soon. Until then I'll leave ya with a updated picture of Jesse.

Making my blog private for a while.

Due to some personal stuff going on I need to make my blog private. If you'd like to be added to be able to view my blog please send me an email at sharkyerin79@yahoo.com

Thanks for understanding and reading my blog.

Jesse's new school!!!!

Today I found out which school Jesse will be attending this fall down in Florida and let me tell you…. It is AMAZING! I’m so excited. I talked to one of the preschool teachers. She explained to me that it is reverse mainstreaming just like it is here, but the therapies are above and beyond anything the school systems here in Chesapeake will do. They have swimming therapy in the pool that they have at the school and they also have horse riding therapy there at the school. I wonder if they use the horses that are down the road that I always pass a couple blocks from my dads. Anyway, I think it’s great and I think Jesse will do great there. They also said I should be able to get a one on one aid for Jesse because he’s a flight risk and has the feeding issues. It’s an all day program which will allow me to possibly work without having to worry about daycare. I’m also going to take advantage of the fact that I won’t have to pay out of state tuition since I’m a navy wife. By the time the divorce is final I will have my residency. Go Me!!! I’m going to look into some different options for school. I’m still not sure which path I’m going to take for school yet. My ultimate goal is Speech Therapy, but they don’t offer that close to my dads. I’d have to drive to Orlando probably which would mean a lot of day care. I’ll get it all figured out though. I’m happy that things are finally starting to look up for me. I think I just need to get down there and get settled and I’ll be just fine. I’m looking forward to my fresh start at life and being able to go back to school. I’m also looking forward to being close to my dad again. Jesse never got to meet my mom before she died and I’m glad that Jesse will get the opportunity to know his Grandpa Linney. I just have to figure out how to keep my dad from spoiling him to much. I’m not looking forward to hurricane season in Florida, but I know it will all work out so I’m not stressing about it. Well, it’s midnight and I think I’m actually going to try to go to bed at a reasonable time tonight so I’m off for now.

I know, I know, here I go again. I just don’t know how else to deal with what I’m going through. I don’t want to talk to anyone because I feel like I have to be strong and I don’t like showing weakness so I don’t want to cry in front of anyone so I’m just going to write. I don’t know if I’m even going to post this blog post, but the writing is kind of therapeutic for me.

Tony came by tonight to see Jesse. Jesse was to busy playing with toys and focused on everything except Tony. Tony just sat there. It was so frustrating to have him just sitting there and not try harder to get Jesse’s attention. He did put Jesse to bed so that was a little time, but Jesse was so tired from not taking a nap today that he fell asleep pretty fast. He was supposed to come over this Saturday too and spend time with Jesse, but he said he might have an opportunity to work. I don’t know if for real he’s going to be working or if he’s just saying that so I won’t think anything else, but I can’t help but think he’s just going off to do something else that involves his new life without me and Jesse. I really hope he’s not blowing Jesse off for anyone or anything else other than work.

I just don’t know what to think anymore. I feel so overwhelmed with stuff to get done. I know I need to just focus on one thing at a time, but when I get one thing figured out it seems that I have a bunch of other stuff come up. Like I was focused on Jesse’s IEP 100% then the divorce thing came up which brought a ton of stuff that I need to do. Then as I was starting to get divorce stuff figured out I find out that Jesse needs surgery. Well I know God would never give me more than I can handle, but wow. God must think I’m Super Woman.

I think what I’m going to do is just get my focus back 100% to Jesse and the IEP. Then after the IEP meeting is done I’ll start focusing on the surgery and getting all our medical stuff figured out for when we move. Then I’ll start contacting the school Jesse will be going to and find out what kind of preschool programs they have. Jesse has been in a great program here and I’d like to find a program that is similar. I also have a meeting with social security about benefits for Jesse. I’ll “try” to wait to start worrying about a job, daycare, moving, finding a home for Sasha, until after Jesse has recovered from surgery. That should minimize my stress and give me plenty of time to relax with my favorite little man. Jesse is going to need about a weeks worth of snuggle time with mommy after surgery so I’m going to put everything aside and stay focused on him until he’s back to his normal self.

Today I found myself getting stressed and I shut my computer down and just watched Jesse play for a while. Jesse has this amazing power to make his mommy forget about all that is bad in the world and smile. He’s got this giggle that is so contagious too. A tiny little tickle to his side has the ability to break our smiles where ever it’s heard. I think his giggle should be bottled up and sold.

Ok so it’s 1am. I think it’s time to wrap this up, post it, and get off this computer and try to get some sleep. I know I’ll be laying here for about an hour or 2 before I actually fall asleep so that will hopefully give me at least 3 hours of sleep before I have to get up and get Jesse to school.

Divorce sucks!

Ok. So I’m hitting my blog for something other than Jesse talk. Things have been pretty rough around the Baker household for some time now. I think the ship has put a strain on my marriage along with a whole bunch of holding back emotions and not talking about our problems. I’ve tried to make things better, but it just hasn’t worked. I guess Tony has tried to make things work also, but we just never really talked about our problems. Well, I know I have voiced my concerns sometimes and told him I wasn’t happy, but I guess the subject just got dropped. So somewhere along the line we have lost each other.

I am always 100% focused on Jesse and basically put our relationship issues on hold. He is always stressed about work and thinking about work or World of Warcraft. We are just at different places in our lives. I’m all about family and doing what’s best for Jesse and he’s all for making the money so I can do what’s best for Jesse and playing his game. It just doesn’t work.

I have done a lot of thinking about this and thought about divorce for a while, but wanted to try to save the marriage because I don’t want Jesse to grow up like I did with dad not around. It was really tough on my brother and I not having our dad around and I didn’t want that for Jesse. The past few months we have spent more time arguing or giving each other the silent treatment than we have happy. It has affected Jesse. He is acting out, BAD.

We came to the decision to get divorced. I don’t really want to add marriage to my list of failures in my life, but I think it is what is best for Jesse. I don’t want to see him grow up in an unhappy home and I don’t want to be unhappy anymore. I want Jesse to think back on his childhood and remember how happy he was growing up and not about the arguing and fighting that he grew up with. I want him to have a great happy childhood and not resent us later for putting him through hell.

Now even though I know we are making the right decision to get divorced I can’t help but be scared for what lies ahead for me. I’m going to be moving into my dads house with Jesse and putting all our stuff in storage until I can find an apartment in a good safe neighborhood with a school that has great programs for my little guy. I’m almost 31 and going to be living with daddy. Wow, that’s pretty pathetic in my eyes. It will definitely push me to hurry up and get on my feet though so I guess that’s a good point. Plus I am sure my dad is going to be through the roof happy having his little guy around.
I also wonder, is this really what is best for Jesse? Now I’m going to be a single mother with a job and going to school. Is this going to affect Jesse? I have busted my ass with him and he is doing great because I am always working with him. Now I won’t be able to as much because of work and school. Is he going to regress? Is he going to think mommy is leaving him to like daddy does?

There is so much going through my head right now I feel like it’s going to explode. I have tried to get a good night’s sleep to no prevail. I can’t shut my brain off. I am a control freak and hate it when I’m not in control over a situation. That’s where my problem is right now. I’m not in control over this and I have no set plans for the near future. Hell I’ve been worried for the past few months about who Jesse is going to have for a teacher next year and about our IEP meeting. I feel like I have enough on my plate to feed an army right now.

Well, I better get off here and at least try to get some sleep. Jesse has an appointment tomorrow to see if he needs his tonsils taken out. It’s definitely going to be one of those triple venti mocha kind of days tomorrow. Thank God there is a Starbucks on the way to the naval hospital. Ok so that’s my rant and now I’m off to bed.