Thoughts...

I've been a mad woman lately. Although I was accepted and again awarded a partial academic scholarship to law school...I again bailed out. Class 3 nights a week about an hour and half drive (each way) away for 4 years was just too much. Not to mention the state of the economy and the prospect of working 40 plus hours a week to make ends meet and pay for my debt for the following 3 or 4 years...uugghhh!
But, I did not completely "give up." I am currently taking graduate classes and am pursuing a masters in school counseling. It's basically what I do now in the after-school setting, but I need my masters in order to secure a job in the school system. This will enable me to work on the kid's schedule and have summer's OFF!!! I am excited. I am taking a class called "Issues in Child and Adolescent Development" and our first assignment was to chose an "issue" and present it to the class. We were told to pick something that is meaningful to us, so I chose cerebral palsy. So of course I was interested, which made the assignment easy and enjoyable. My next topic is ROP.

Things have been going well lately with the kids. Edwin is improving with his walker, and has finally, after almost 3 years, figured out how to rotate his trunk and gets into "bum" sitting all by himself!!!! This is a miracle to us and we are so pleased. He still prefers to "w" sit, but he is rotating to sitting on his bottom numerous times a day without any request from us that he "fix his legs."
Serena is really amazing with her memory, language, and creativity. I guess I am hyper-alert to all the skills they are acquiring, and am in awe of all they can do given just how high the odds were stacked against them.
However, we still have a long way to go. We still have school to face, and Edwin is still basically non-verbal, although he does say some words, his articulation is quite poor and the number of words are around 8-10. Signing is working well, and pointing to objects that he wants or needs also works to help ease his frustration. And of course independent standing and walking are still goals that we continue to work toward and hope for.
We also haven't been able to take away their bottles, although a huge accomplishment this weekend has been Serena drinking from a sippy cup and an open cup many times throughout the day...normally she outright refuses and cries uncontrollably for her "baba." Edwin won't drink out of an open cup, but will gladly drink from a sippy cup. Serena is still choking/aspirating on the water, but I think this is something she can control once she learns to control the flow and properly drink while protecting her airway. It's tough though, because I'm worried about this in daycare and at school. People are going to worry and it is one more thing that makes her "different."
Although I am amazed by the kids and feel so grateful for everything they are doing, it's hard not to notice how different they are compared to their "typical" peers. It's something I accept, but acceptance doesn't always make it less painful. Even the "little" things are tough...like Serena's voice. She can't yell, not that I want her yelling, but even when she tries to call for the dog, you can hear her attempt to increase the volume of her voice, but it doesn't work. I know this is going to affect her socially, and it just sucks she has to deal with it. Edwin's "disabilities" are more obvious, and he won't be aware (as of now) that he is "different;" but there will come a time when he does realize it, and that's going to be hard. It's so easy for me to love and accept them, but I know it's not going to be so easy for everyone else. For example, they begin daycare July 1st. The daycare is located in the same building where I work, which is why they are going there. However, they have never had a child with a physical disability and they really aren't staffed to give him the individual attention he needs. I have negotiated having an 18 year old who has a summer job to be placed in the Pre-K daycare with him to give him that attention and support he needs. But come summer, she's off to college and there is no funding to hire more staff. I am worried about how much individual attention he will receive. In school, which is only 7:55-10:35, he will have the support of an aide, but the school system doesn't help kids in daycare (and I have to work), and the funding that was available for aides in daycares has been cut given our crappy economy right now. I know having Edwin in the program is going to make everyone's jobs much harder, and I just hope they can love and accept him enough to not "resent" that he is there.
I'm probably over-analyzing things and worrying, but this world is catered toward "able-bodied" and "able-minded" people, and it's hard to create a safe place for your child with special needs in this world. Good thing I'll be in the same building checking in on them multiple times a day!
But seriously, What's NOT to LOVE????!!!!!