Thursday, April 25, 2019

Day 13. Year 2019

     I wanted to start off today's post with some positive news. Remember when I was talking about Vicki getting off the bus in the afternoon from school? And how last week {I thought/hoped} that because of a change in bus aides Vicki was struggling again and not getting off the bus? I was praying that was the case, and I think it was! When her regular bus aide came back to work on Tuesday, I held my breath for a second, and Vicki only hesitated for about 5 seconds then got up and off the bus. Phew!!!! Hopefully, that was indeed the issue, and because her routine was re-established it extinguished the behavior. Not that that is good for the future, because it's so important for her to learn to manage change and be able to push through it, but for now, for this moment, I let out a little sigh of relief. The crazy thing is... a 5-10 second hesitation with Vicki can feel like forever. Like I am caught in suspended animation. That hesitation could go either way. It could be nothing, or it could be that we are hunkered down for a long wait for her to transition. My family was obsessed with the TV show Psych. And waiting for Vicki to stand up reminds me of one of Shawn and Gus's catchphrases. I've heard it both ways.  Yep. I have definitely seen Vicki's transitions go both ways. It could be nothing but a slight hesitation, or it could be hours on end. Luckily it went the first way this week.

     I said that I wanted to talk about Vicki's and Ally's relationship a bit more. Don't you find it fascinating, to see the changes in sibling relationships and interactions over the years? It's especially fascinating to me to see how theirs has ebbed and flowed over the years. Relationships take work. On both parties parts. And with autism, it's very difficult for Vicki to establish certain relationships. One of the hardest things for me to talk about is relationships. Vicki nurtures and fosters her relationships just like anybody else would do, but it's different. But also the same. I absolutely hate answering social questions about friendships. Does Vicki have friends? Absolutely I know that Vicki has friends. And that she develops those relationships in her own way, to suit her needs. What is a friend? That's such an interesting question to me. How do you define your friendships? What does it mean to have a best friend? To have acquaintances? To see that changes in friends and relationships over the years. I could write so much about this. But I won't. I need to focus. Anyway, One thing that saddens me is that Vicki has never, and may never, ask to have a friend over. She has never been to a sleepover or had a friend sleepover here. She was in a "playgroup" when she was a baby, but did she ever ask for so-and-so to come over and play? No. If I write too much about this, I will start to cry. So I will leave it there. I just know that God knew exactly what our family needed. And he gave us Ally. He gave Joey Ally. He gave Vicki Ally. And yes, I believe that Ally is Vicki's best friend.

     Vicki and Ally have a 3 year age difference between them. Vicki is Ally's big sister. Ally is Vicki's little sister. I am an only child, so I know nothing from personal experience about sibling interaction. I do know, however, that Vicki and Ally's relationship doesn't follow the 'norm'. But who cares. What I care about is how these 2 can get what they need from each other.

     Ally was born right after Vicki was formally diagnosed with autism. At that time, Vicki was quite the escape artist, and in order for me to be able to nurse Ally, Mark had to build a half wall with a heavy pocket door with a lock at the entrance to the living room. All of the regular baby gates were child's play for Vicki. She could Houdini over any of them. Thankfully the door worked, at least for a while, so that I could keep an eye on Vicki and nurse Ally at the same time. Anyway, in the early years, {well, actually, it wasn't just the early years, it's been over all the years, but was definitely most prominent when Ally was younger} Vicki would push Ally down. Yes, I've heard that 'normal' siblings do this,  but it was really hard with Vicki and Ally. Vicki would push Ally over as she was learning to walk. And, of course, Ally would cry. And Vicki would laugh. {Again, I'm sure this happens with other siblings, but, it was different with them}. Any time Vicki was around Ally and close to Ally, I was on edge. Especially if Vicki was 'off'' more than usual. More times than not if she reached out for Ally, it was to push her down. How does that foster a developing relationship at such a young age? Ally didn't understand why Vicki was pushing her down all the time. All Ally knew was that it hurt, and she was sad. And she couldn't play with her sister like she wanted to. And from a young age, Ally would try so hard to not cry, because that reaction always spurred further reactions from Vicki. And when you are hurting and your sister is laughing, how do you come to terms with that? Let me tell you, as an adult, I still have trouble with that.

     Over the years, when Vicki would draw pictures of our family, Daddy and Mommy would always be super tall sticks, Vicki and Joey would be about the same medium size, and Ally was always a baby, crawling on the floor. Even when Ally started to grow up and get much taller, she was still the baby crawling on the floor in Vicki's eyes. {Heck, in my momma's eyes too!}.

     Ally started getting older and wanted to play more. Joey and his dinosaurs were always close by to fill in for the pretend play that Ally sought out from Vicki, but was never really able to get. Oh we fostered parallel play, and we did have moments where they would all do something together, and I held onto those moments with everything I had. And I'm sure Joey and Ally did too. Things were very different though. And yes, I grieve for the moments that the girls never got together, but we celebrated the moments they did get. The little sister, as she was learning to read, tried to teach the big sister to read. And when I watch those moments, it's both heartbreaking and beautiful at the same time. 

     I have way more to say but want to get this posted now so I will finish up tomorrow. I will leave you with one of the birthday gifts Vicki gave to Ally this year. She colored a picture of the sisters Anna and Elsa from Frozen, and I had her give it to Ally as her birthday card. I wanted to have Vicki write on it, something like 'Happy Birthday to the best little sister in the world', but we haven't done that yet. Vicki has had more difficulty writing lately, and I want to catch her when she's not frustrated. Ally loved the picture. So, today I will leave you with a lyric clip from Frozen. And yes, I cried as I typed this thinking of Ally singing this to Vicki:

     Do you wanna build a snowman?
     Come on let's go and play.
     I never see you anymore, come out the door
     It's like you've gone away.

     Vicki, please. 
     I know you're in there.
     People are asking where you've been.
     They say have courage and I'm trying to
     I'm right out here for you, just let me in. 

Much love to you. As always, thank you for reading. xoxo
     

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