Tuesday, June 3, 2008

Another day down, thought I would feel better....

So, another day, not yet over, yet, slipping through my fingers. They are taking me off of one medication putting me on yet another. Weaning me off wasn't an option, so, now I feel like.... well... YUCK!!! Tried to stay active, but I am not motivated to. I won't let myself just lay in bed, as I am afraid I will never want to get out!!! So, here I sit, with my thoughts all day.

I personally think that I am a pretty assertive kind of gal. Say what is on my mind. I try to be appropriate about it, but sometimes, I need to be more assertive, as my voice is not being heard. If I know something is right and I need to stand up for it, then, the assertiveness comes through. So, here I am.... a mom, knowing that there is more wrong with my son, yet, no doctors would listen to me. My voice wasn't heard. I tried to become more assertive, yet, still nothing. My son went until age 15 when finally a light bulb went off in someones head that said, hey, maybe they are right. Sadly enough, she wasn't a doctor, but a counselor. She didn't give the best advise after that, but at least she did get the ball rolling for me when it came to talking to some doctors and bringing Aspergers to light in our son's world. Still, they really did nothing. Wanted to see him every three weeks. People, this is absurd! Our health care system needs to get it together. Our HMOs need to get our children, and us, for that matter, the help we need when we need it. We are consumers paying for their services. So, with all this, I feel bitter. I feel bitter with the system, but I feel more than that... I feel worthless to my son. My assertiveness was not nearly enough. Why is it when women get the job done, we are called a *B*? Makes no sense to me. Believe me though, when it comes to my kids health, any one of the three, I will be this big *B* and wear the word with honor if it is not letting my kids down. I feel I let my son down. I feel like if they would have listened years ago, he would have had better treatment, more care... and that he would be home with his family where he belongs.

I try to get my mind off of things, yet it is hard. Last night, I took my daughter to the mall. I didn't really want to go as I don't like being near people, but know I can't seclude myself from the world. We went in. I felt myself being tense and would have rather just gone home. We went to a store in the mall and we were gone within 20 minutes. I just don't want to be out. We went out to dinner.... oh, that would be so much better.... relaxing, just me and my girls. My poor girls.... I just was on edge and again, just didn't want to be there.

It is hard, as I want my relationship with each of my kids to be so precious and so individual, you know. But with the events that have taken place, it is hard for my mind to focus on anything but getting the help that Taylor needs. I love each of my girls with all my heart, just as I do with Taylor. They each have a unique and special place in my heart.

Another thing about Asperger's Syndrome Tip of the Day: Unorganization is a HUGE thing in the person's life with Asperger's. They often do better by lists. It is not that they are trying to avoid things that need to be done, but their thoughts just never go there. A messy room is common. Our son lives better (in his mind) or feels more comfortable in a room that is totally dirty or disorganized than if it is clean.

1 comment:

Didi said...

Our son Colin didn't get his diagnosis until he was in 3rd grade...I often wish we had found out sooner...I had suspected it years before but didn't see a need for formal diagnosis...until HE started noticing the difference between himself and other kids, to the degree that he was suicidal over it! How it broke my heart to see our sweet son feeling that kind of pain in his heart. Our other son was 14 before we found out about his ADHD....I still beat myself up for it....he has been acting out for years...and I didn't see it. But we have to live in today...and realize that we do the best job we can as parents...we can't go back and redo yesterday..we have to celebrate today and hope for a better tomorrow.