Siena is 17 years old, and her step-brother has microcephaly. In the interview, she describes meeting her brother for the first time and adjusting to living together. Siena also gives advice to other siblings of individuals with developmental disabilities.
Background: My name is Siena, and I’m 17. And my brother’s name is Kai, and he’s 19. He has a condition called microcephaly, which means his brain is smaller than the average person. So even though he's 19, he has the mental age of a four-year-old. So he's still learning addition, and he gets really excited easily. And he has the speech of about a 4-year-old.
What is your everyday life like living with Kai?
The first thing that pops into my head is that my parents are divorced every night, so I'm with my dad, and he is as well. And we dance to the Just Dance version of YMCA on YouTube. And he's been doing that every single night for the past eight or nine years now. And he's done it every single night. He's really sweet. I honestly don't interact a bunch with him on the weekdays because of homework. But we will talk for about 10 minutes, and then he will ask to take a break, which means going on his iPad or watching YouTube.
Do you ever worry or think about what his future will look like?
Yeah, a little bit. His own condition doesn't have a specific lifespan. But I do worry because he isn't able to express his own emotions clearly for everyone to understand. It's sometimes hard to understand his speech like you have to know him to understand him And he couldn't live on his own because he can't drive, he can't really cook much, and we help him get through his bedtime routine. So there's a little bit of worry about when my parents get old, like, what will happen, and I’ve thought about it more as I have gotten older.
Do you explain Kai’s condition to your friends?
Yeah, I always explain it and do the little thing I did at the beginning, where I tell them that he has microcephaly, and then I tell them what it is. And then tell them if they need any help understanding him that, I can help interpret.
What's your relationship like with your parents?
It's a little bit different for me because he's my stepbrother, and my stepmom lives with us. But I really haven't experienced the feeling that he gets more time than me, which I know is a really common experience of siblings of special needs children.
When did you meet Kai? What was that like for you?
I had previously met my stepmom before him. And he came to my dad's house, and I was able to understand him immediately, which was cool. And he looked at all the stuffed animals and stuff. And I showed him around. So I think around a year after they started dating, so I was 10, we started doing this thing where I would spend the weekend with him and my stepmom. And then, when I was 12, we moved into a house full-time together.
What was the adjustment like moving into the same house?
We shared a room for a while, and he didn't really understand the concept of sharing or personal space. I have this certain pair of pants that he really likes, and he'll take them. And they're my favorite pair of pants. But he'll take them and just hold on to them. They don't fit him, but he just carries them around. Which is really cute, but it also gets really annoying when I want to wear them, and then I have to look inside his covers to find them. So it was kind of an adjustment. Also, I would share things with him, but he wouldn’t share them back. And he went to bed early, so I remember I would sit in my bed and use headphones. But I think at first, I felt like there was less attention because I have never had a sibling before, I'm an only child. So it was just an adjustment. And I think it was probably even more of one with Kai having microcephaly.
Are there any pieces of advice that you would give to other siblings of special needs children?
I'd probably say that when you get frustrated with them, or you feel like you're not getting as much attention, just think about the silver linings and the happy moments. For example, I'll think about how excited he is to take my pants and how happy it makes him even though it may be annoying in the moment. So just things like that, like looking at the happy moments, even if they can be annoying sometimes.