I am an only child. I don't know what it's like to have a brother or a sister at all, let alone to have a sister who has autism. I don't get the sibling thing. I don't understand the dynamics of it all, the bickering, the competition, the protection or the love... It's foreign to me. But I want to talk about it tonight. I also know that I am pretty darn tired and I have a lot of paperwork and phone calls on my schedule for tomorrow... So, let's call this my intro to the sibling thing. I'll continue with parts 1 and 2 over the next few days...
Today seemed like project central at our house. Ally had a Chinese Invention poster board project to do. Joey had to finish a writing prompt for English class and put the 'finishing touches' on his 8 page life science project. And our master bathroom contractor finally came back to start to finish up our 8 year long bathroom project.
It's days like these... heck, who am I kidding, it's EVERYday that I feel like there is not enough of my time to go around to everyone. I look back at the day and think, I don't remember sitting down at all, I feel like I was constantly helping someone do something, and yet, I feel like I did nothing and no one got all the attention and help that they needed. I'm sure all parents feel that way. Here's that word again, inadequate. Kids are needy. Sometimes I feel so overwhelmed with their needs. And I never feel like I give enough, do enough, can be enough for what they need.
I am so thankful that my husband is there to give everything he has as well. And I am thankful that we can have aides in our house to give everything they have to Vicki and to our family as well. You know when you have lyrics in your head that you just can't stop singing... that's me right now....And it goes a little somethin' like this...Tag team back again check baby check baby let's begin (OK, I really don't know the words to this song... ha ha...but I'm singing my heart out anyway. ) Thank goodness for tag team parenting! When each kid needs to be the center of attention it's quite helpful to have 1:1 to 1:1 to 1:1. And even with that, it still seems like it's never enough. Even with 3 adults to 3 kids Vicki was still able to pop a Barbie shoe into her mouth today and freak us out for a second. And the list goes on and on.
Sometimes at the end of a day, I think... wow... how did we manage that? Pause for bells and whistles and deafening, thunderous applause. Everyone deserves accolades at the end of a day. Take a bow... it's not easy. I read through facebook statuses and it's always there... Coordinating how to get everything done. This one has to be here at this time, that one has to be there at the same time... It's not the same world as it was 30 years ago where the kids were just sent outside to play and came in when it got dark and they got hungry.
Sorry.... I am all over the place tonight... Bring it back ya'll, bring it back... Here we go....
When I look around... I see the indelible mark that Autism has left on my family's lives... it's everywhere. It's places that I don't even think to look. Do I blame autism for some of my shortcomings as a parent? Probably. It's easy to do. Autism is a good scape goat. Do I think if autism wasn't in our lives I would be a better parent? Maybe. But there's also the question... has autism made me a better parent? Maybe. Who knows... Would Joey be as sensitive and gentle with others as he is? Maybe. Would Ally be as.... arg... I can't think of the word... would Ally be as protective of some of her things, her toys, her food as she is? Maybe. Or is it just that sibling thing that I don't understand? Possibly...
Every situation you are put in shapes, to some degree, the person you are. Joey is fiercely protective of his sisters. Is it because of some of the things he has seen autism do to Vicki and to Ally and to us as a family? Is Ally as protective of her 'things' because of some of the things she has seen autism do... and has been on the receiving end of.
The other day, when we were all at the park for Ally's soccer practice... I was watching kids on the playground. There are so many little monkeys on the playground. Gosh, some kids can climb, and hang and swing off those monkey bars... They are so fast and so strong. And I look at Joey and to a lesser extent Ally... and I think about when they were really young...before we had an aide for Vicki... and it was just me at the playground with Joey, Vicki, and Ally. It was never relaxing. It was always stressful. I couldn't be there for Joey or for Ally because I always had at least one hand, if not both hands, on Vicki. Trying to pick her up from a tantrum, trying to keep her from running... Even as I am writing this, I can feel my pulse quicken, just remembering those times. I couldn't help them on the monkey bars because I couldn't leave Vicki. We couldn't stay at the park long, because something usually happened with Vicki. Eventually, it's just easier to withdraw. It's easier to sit in our living room with the door pulled shut and just try to survive.
If it wasn't for autism, would Joey or Ally be that little money on the playground? I know the world of what ifs are a dangerous place to go to... Maybe my kids just weren't equipped with that monkey gene. Sometimes I just wish I could have given them a real chance to find out for themselves... There are so many little things like swinging across monkey bars... that when I look at it, I see autism.
As I reread this post.. it seems a bit harsh. I just want to make sure you understand. I don't blame Vicki. I blame autism. I don't hate Vicki. I hate autism. Vicki has taught us all some very amazing life lessons. Not autism. But Vicki. My children have seen so much. And I know that they don't take for granted something as simple as going to the playground. Because it is such a big deal to us. There is always so much planning and stress... even to this day, to just go to a playground. They don't take it for granted. And neither do I. We all hear the thunderous applause when we come back from a successful trip to the playground. And we take a bow together as a family. We all do the Dora Dance. Yeah. We did it. We did it. We did it hooray. We got out of the house and walked to the playground. Yeah, We did it. We did it. :)
My apologies for posting this so late... I couldn't keep my eyes open last night... I need to run... because I think we may have pink eye in the house. Welcome Monday. :(
Oh, before I go... Here's a little Vicki-Did-It for you.... With a little help from her aide and daddy, Vicki painted her own nails!!!! They look amazing! I was watching the concentration she had when she was applying the polish... and the satisfaction she had when she finished a nail. Priceless. Oh, and did I mention that Vicki painted her nails pink?! She used to only allow 'red nailpolish' on them. Now, this wasn't the whole nail polish exchange... but this is what I choose to focus on and remember. :) So... yay Vicki!!!! If you happen to see her pretty pink nails... give her a high five! She deserves it!! Whoomp there is it! Let me hear you say it!
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