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!


Bonnie said...

I have twins with FX too, and they also have a big sister, and I find the sibling relationships fascinating too. The boys interact with each other in a way none of the rest of us can understand. They truly have their own way of communicating. Their sister tries so hard to play with them, with sometimes and limited success. She goes back and forth between loving them, and being jealous of all the attention they seem to get. I'm hopeful that's an age thing (she's 7, they are 5) and we try to give her a bunch of special attention too. It is a wonderful thing to see, though, isn't it -- when your girls help Alex thrive and survive!

Anonymous said...

i love reading your posts! you have no idea, or you probably do, how i can relate! joshua , my oldest who is 16 and autistic sure can embarass his 2 brothers and us sometimes, but oh yes, i can laugh too! love the gas stories, those are great! LOL your son sounds like a great boy! and i feel for you w/schools, seems like you have to tell them over and over and over what to do. uuugghhh. Hang in there!

Renee (Holtzlander) Wright - graduated w/Bradd

Nikki said...

Being a teenager myself (just turned 15), I can totally understand how it could be embarrassing! But he definitely has the two best sisters he could; I can tell that much. :)
I have Asperger's Syndrome, and I know there are times when I've embarrassed my siblings, but they were always great about it. I'll always be thankful for that, and I'm sure Alex feels the same about his sisters. :)

The Lesters said...

I hope that my boys can be just as supportive of Peter as your girls are of Alex. They sound so sweet. I haven't reached the point yet where I am embarrased by things Peter does but I can feel that day coming. Balancing attention between siblings is so hard especially when one has special needs. It feels like the special needs child needs more attention but then you don't want your other children to feel left out. We are trying hard to find that balance.

carma said...

Bonding between sisters is a tricky matter. How awesome that they are so good with their brother though :-)