Friday, September 21, 2012

Ready for a Flashback?

9/21/2012 4 Comments

I like to sometimes link up to a meme as it prompts me to write and post. Something has to motivate me right? So Flashback Friday... hmm..... Going back through the years has been tough lately, but sometimes it can be wonderful.

My babies have grown soo much!!!

Chucky Cheese





Just a Little Update

9/21/2012 0 Comments

Good Morning!! I wanted to give a brief update as to how things are going. I know I keep saying I am going to be more consistent on my blog but honestly, it isn't a commitment that I can keep. I cant seem to get enough time to sit down and write. I do however try to keep everyone up to date.

Charles has a clinical diagnosis of Mitochondrial Myopathy. This means he fits all of the symptoms and his bloodwork has also come back with abnormalities. More testing and trying to narrow things down. His behaviors are getting worse and I am unsure whether this is because of him being so tired or due to other issues. I guess time will tell. He is still on the waiting list for Intensive therapy. It seems to be taking forever. 

Yesterday his service coordinator called to tell me how it was all going and stated that he is a high priority case. Great news for us because that means they will be looking at his file soon. (Hopefully befor mommy loses her mind.) I met his new therapists and teachers and they all seem great! I am excited to see what he accomplishes this year. 

Early next week he goes to be casted for his braces. He will have articulated AFO's. We recieved his stroller which will really come in handy. Just happy that some things seem to be falling into place. It has been another really long and trying year. I sure hope it calms down really soon. 

Friday, September 14, 2012

Special Needs Moms Are Bitches

9/14/2012 1 Comments
This post is not in any way 
to offend anyone. Please read it
fully before getting upset!

This post came to exist as I was chatting with another special needs mom. We were talking about my "new" approaches to the doctors and I said, I sound like a Bitch. Somehow that has lead to this post.

As a special needs mom, I encounter many battles. Battles with my children, doctors, teachers, and even family members. We fight for every service our children need and every right they deserve. We fight for respect and acceptance. All this fighting has made me a Bitch. I have capitalize it cause it is my title. Don't call me Ms. Long, call me Ms. Bitch. I take no offense and I pride myself with that title. I know I am not the only mom who has become a bitch by default. It isn't even just because of the struggles, I now bitch about everything.

For years I bitched that my son wouldn't speak but now I bitch that he won't shut up. Seriously, it really does get annoying when a child continually repeats them selves over and over and over again. It isn't just the repeating because my son, when he talks, takes FOREVER to finish a sentence. It takes so long I describe it as constipation of the mouth! I know many parents would do anything to hear their child talk and most of the time I love hearing it, but sometimes it just gets on my nerves. I am a bitch!! My boys do NOT have volume control either so if they are standing right next to you they still feel the need to shout. Buddy talks loud and non-stop, sometimes so fast you can't understand him. It must sound as if I am being ungrateful but I am not. I am just living up to my title!

Many people say that we are our children's advocate... This is true, but we have to be a bitch to get it done. We can't sit in a room full of highly paid professionals who dont want to give our children what they need and be sweet and kind. We have to fight for what we know is right. When papers get lost or insurance claims denied, we have to fight for justice. All of this fighting becomes a second nature. It isnt just for medical and school stuff, but for ignorance too. I have learned to know when I can be a bitch because a grown adult never learned acceptance.

Having to be a Bitch so often has caused me some issues though. I find myself bitching about everything now. I actually have to monitor myself and calm myself down now. I have bitched because the milk was put in the wrong fridge. The funny thing is there isn't a pre-determined fridge for anything as long as its in the fridge. LOL... Well, I hope I haven't offended anyone and if you ever run into a woman with the front of her hair graying, a 6 yr old screaming and kicking walking with three other children, who looks really bitchy, you have probably met me, or another special needs mom. So please, think about what may have made her so bitchy. She probably has a good reason, I know I do.

Sometimes Looking Closer Is Hard To Do

9/14/2012 0 Comments
I take a lot of pictures. I just love doing it. I love being able to look back and see where my children were and where they are now. It is difficult to gauge it when you are constantly in their presence. Ever notice how your closest friends who see you on an every day basis may not notice any weight loss or gain but when you see someone you don't see often they will notice it? That is how it is with our children as well. We keep a wall in our home where we measure the children's height. It is amazing to see how much they really have grown over the years!

I have been watching Chucky Cheese very closely lately. I watch the way he walks, the way his nose wiggles when he sleeps, the look on his face when he is excited. I am just completely awed at how strong and adorable he is. But, what I don't see so well, unless it is pointed out, is the losses he is obtaining. I think I try to overlook all of that. Not that it isn't being addressed, because we regularly go to the doctors and many specialists, but, I can't focus on it. I need to keep moving forward and enjoy him for who he is. This whole thing can be pretty depressing.

I got a phone call the other day when C.C. was at his dad's house. It was a friend who was a little concerned. She had seen my son walking with his dad but he was walking much slower. You know the picture, the dad has the child's hand and the child appears to be being pulled along behind them. C.C. is NOT supposed to be walking long distances. She was aware of that but it wasn't the main concern. She asked me if I had noticed his legs seem to be very skinny now. I know he looks thinner but she was saying his legs seem much thinner than the rest of him. I know in my heart she is right. I know that when I look back at the pictures I will see the same thing. I know that his legs are almost always multi-colored (bruised) anymore because of him falling so often. But thinner, I am having a hard time browsing through photos to even compare.

Which is why I decided to write this post. If I do it this way I don't feel so alone. Maybe it wont hurt so bad. Maybe, I will hear some supportive words and encouragement. Just maybe.....