Keely Hamilton

Interview 12/18/2023

Background: My name is Keely Hamilton. I am the mother of two awesome boys, one of whom has autism. My youngest son was never a clear-cut case. He's been receiving services from the age of two. And everybody kind of agreed that there was something going on, but he didn't really fit any one box. He showed some of the signs of autism but not enough, some of the signs of ADHD but not enough. He had speech and language impairment, sensory processing, and other stuff going on. And so while he was getting support, there was a lot in this, this area that's really diagnosis driven. And when I was looking for support, as a parent, it was really hard to find support that wasn't specifically geared around a diagnosis like there's a support group for autism, but if you don't fit, you can feel a little left out of that. And we actually didn't really get a clear diagnosis. He didn't get the official diagnosis of autism until age six, which is pretty late for someone who's been receiving services consistently since he was two years old. 

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My sons are pretty close in age. They're 20 months apart. So when Gus was really young, before he started school, everyone who helped us was coming into our home. All of these professionals were coming into our home, bringing all these cool things and giving my youngest son all of this attention. And often, my older son was not a part of the activities and it sometimes upset him. And so I saw how this was affecting our lives as a family and their sibling relationship with each other. I was able to find that, and there is a lot of support out there for parents and caregivers because it's very needed, but there was less for my older son. And there was not a lot of information on how I could support my older son as a parent and how I should be talking to him about his brother’s disability. 

When I first came across Sibshops, it was something that was out there for when he got older, but when he did get older, Sibshops weren’t really around anymore. So I couldn’t find one for him to attend. Another friend of mine who was searching for her kids also found the training that you could attend to facilitate a Sibshop. So, I signed up for the training and took the training to become a Sibshops facilitator. And soon into it, I had tears in my eyes, and I was like, this is what I can do to help. I have a background in Youth and Family programming. I spent a lot of time working in summer camp, developing Youth and Family Programs, and training people around them, so this was familiar enough to me in a way that I could take that part of myself and those skills that I had.

During the pandemic, my son had a very different experience than his peers. For example, Gus would be screaming in the background while West was on a Zoom meeting for school, and his teachers would ask him to unmute, but he couldn’t because his brother was having a hard time. 

There were a lot of years that we didn’t do the same things that other families were doing. For example, we weren't going out to eat in restaurants Gus couldn’t handle it. We can we can do that now but West often feels that his brother chooses where we're going to eat for that to be a successful experience. It's often really unfair, but it’s sort of the way that it is.

There are a lot of assumptions made even by his teachers about what his life at home looks like and what he has available to him in terms of support, help with homework, his brother not destroying things, etc. It's something that we try to tell my son's teacher even though they go to different schools, and that shouldn't really be so much of a part of his life at school. Except for this is a piece of the puzzle. This is part of our family, and it's maybe something that his teachers should be aware of. 

Siblings are the longest-lasting relationship in most people's life if you're lucky enough to have one and, or more than, one. But it's not something that is always given a lot of attention, and I think it's a super important piece that is often overlooked. 

What advice would you give to parents who are looking to support the sibling(s)?

I think that many parents are unsure of how much they should tell their other children about their sibling’s disability. But I think that having an open dialogue with the sibling is really important. Having a conversation with them about what their sibling is not a one-and-done because things change and people change, but really trying to open that up and establish that dialogue to where they can ask questions. And I think that we sometimes expect or assume that siblings know a lot just because they're around it and they're familiar with it, but then maybe may have some confusion. One thing that's really clear in the research is how, whether kids are talking about it or not, they notice a lot. They're great observers, but they're often poor interpreters. So they're, they're seeing things and they're taking it in, and they're seeing what's going on. But they're not always making all the connections that adults do. And sometimes they're making connections that are really, really wrong and carrying things around with them that we don't realize. A classic example is that a kid didn't clean their room, then the next day, their family got a diagnosis and depending on their age and their developmental status, they may connect those two things in their mind. So it's really important that parents reassure the siblings they didn't cause this. Because that might be a worry or a fear that they're walking around with, whether they're expressing that or not, and that. And their feelings and their needs are still important, and they still matter, even if they're not always the most important thing at that moment.
 

I think it only got easier when I connected with other parents, and they have always been my best source of information and support. And I think that the same thing really holds for siblings, so it’s really important for them to make those connections and have their own peers who get it. There is a lot about this journey through disability that is common and that we really can relate to. So that was the biggest thing that came out of my research, that siblings wanted to meet other siblings can learn from them and help them. Helping helps you help yourself. 

What were some of the other key takeaways about sibling’s needs from your research?

They were interested in meeting other siblings and the idea of a Sibshop. And all of them expressed that their parents talking to them about their siblings either helps them a lot or that they wish that their parents talked to them more. And it was very clear that they've been deeply thinking about this. 

And the other thing that was a real note for me, and my research was that only one student that I interviewed had ever learned about or heard anything about autism or neurodiversity in school, and that it made a huge impression on him. And it was pretty noteworthy, that for all of the others, they had not received some sort of education on neurodiversity in school. So, the burden falls on the shoulders of siblings who often educate others about their siblings and have to advocate or stand up for their siblings.