Wednesday, March 24, 2010

Special Siblings

I have been off for awhile "working" with the school district. You know, one of those struggles that makes you physically sick every day because you fear you might not get the decision makers to see things from your perspective. Ironic because no one can see things from a special needs parent's perspective, but we have to spend hours trying to convey it to a bunch of strangers anyway. The good news is that the discussions are over and my concerns and point of view have been heard, so at this point, it looks as though the school will be acting in the best interest of the kids, especially Alex's! Yeah!

Well, aside from the giant school issues, we had a nice visit from Big Sis. Home from college for the first time in awhile. I think she was just wanting to collect her birthday gifts. Still, it is so fun to watch Alex and Big Sis, for awhile anyway. Alex, of course, has his limits, and when he is done with something (or someone) he is DONE. So, their interactions come in short bursts.

Ever since I found out I was pregnant with twins, I have been intrigued by all the theories and ideas floating around on sibling relationships. Big Sis is 6 years older than the twins, so that created an interesting dynamic on its own. Then, we found out Alex had Fragile X Syndrome, so we kind of wrote our own book on sibling relationships. I just wish I could understand it all.

Big Sis was obviously an only child for six years, then got bombarded by having to share her life with not only a brother or sister, but both, at once! On the one hand, she was spoiled rotten as an only child - and only grandchild on one side - for six whole years, but boy did she get blasted out of the water by twins! There had never been twins on either side of our family, so that was quite a shocker and boy, did the center of attention shift quickly.

Big Sis loves Alex, she is very protective. If she gets wind that something happened at school, she is in my face wanting to know what I am going to do about it. He is the first one she wants to talk to when she calls home. She is also one of his biggest fans. She relishes in his successes and pushes him to succeed just like the rest of us. Big Sis laughs hardest at Alex's jokes, even though most of the time they don't make sense. Big Sis is and always has been very impatient, I think that comes from being the only child for so long, but with Alex, she can wait forever. Big Sis is very sensitive and compassionate. I think Alex taught her that. She is going to be a teacher, again, I have a feeling Alex has a little something to do with that decision.

There are times, though, that I know it is and has been difficult for her to have him around. It is hard for her to share that part of her life with anyone but her closest friends. That has to be difficult, too, because her little brother is a big part of her life. She doesn't admit it, she may not even be conscious of it, but I know his behavior and outbursts are embarrassing to her. I can only imagine how hard it was during her middle school and high school years.

Even I have to admit, there are times when I am embarrassed by something Alex does. After all these years, he can still get to me. We have worked really hard to make sure Alex knows it is not appropriate to pass gas in public, but sometimes when he's anxious, like in the middle of an aisle at Lowe's, he just can't control it. It is embarrassing, but I choose to go hide somewhere and laugh til I cry, it's my favorite coping mechanism. Now I am obviously? a mature adult who has developed very complex coping strategies, but this kind of situation would be terribly embarrassing for a teenage girl. Imagine a college girl trying to make a new life for herself with her 13 year old brother passing gas all through Lowe's. Again, I would laugh, most people in this situation would crawl in a hole and hide. (I also call this choosing my battles!)

Twin Sis and Alex's relationship is entirely different. She and he are best friends. She does know that he has Fragile X Syndrome and has certain limitations. She knows that, but she doesn't really see it. She includes him in everything she does. If for some reason he can't do something, she does it for him without even realizing it.

She advocates for him at school. She makes sure kids are nice to him. She is the first to call somebody out for mistreating her brother. The thing about her is, she doesn't want to be the one "seen" doing the advocating. She just doesn't understand why people say bad things about Alex or his friends just because they have some type of special need.

Twin Sis' relationship and view of her brother is almost completely opposite than that of Big Sis. Twin Sis doesn't see that Alex is any different than she or any other kid. Big Sis pretends not to see the difference, but knows it's there.

I know, there are so many factors in play; birth order, sexes, twins, the kids' ages, blah, blah, blah ...

All I know is that our girls are two very good sisters to Alex! We are very fortunate that things worked out they way they did. Alex is one lucky kid! The funny thing is Big Sis and Twin Sis know they are pretty lucky, too!

I just wish I could figure out this sibling relationship thing, Big Sis and Twin Sis' relationship looks nothing like either of their bonds with Alex!

Thursday, March 4, 2010

Choose Your Words Carefully ~~ Especially the R- Word

Sorry, folks! Soap box day !

Well, yesterday was the annual End the R-Word Day. The Special Olympics sponsored program had over 100,000 people sign the pledge to stop using the r-word. While it's nice to have a day of attention, it should only be the beginning. People should always be thoughtful of the words they choose.

My personal take on the word retarded is that it is a clinical term, mentally retarded describes a person's mental capabilities. Any other use of the word is just not good grammar. It's irresponsible to use the word outside of a clinical setting. Period!

As a parent of a special needs child with mental disabilities, I am pretty sensitive to the use of the word retard and I am not going to bore you with another story about it. You can read my first one if you'd like.

But don't stop there. Over the last few weeks, some pretty public people (and the political ones don't count) have shared some amazing stories on behalf of the Special Olympics campaign to End the R-Word. There is a button on my blog for you to go view some of those videos on their site. (Sign the pledge while you are there! )Here is one, though that threw me for a loop. Never in my wildest dreams could I have seen this one coming.

If Johnny Knoxville gets it, why doesn't every one else?