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Hi, my name’s Leanne Firestone. I am an autistic adult. I also have ADHD and I have Hypermobile Ehlers-Danlos Syndrome. I have postural orthostatic tachycardia syndrome (POTS) and I have few other mental diagnoses as well. And I am currently raising a eight and a half year old daughter who is diagnosed as autistic and ADHD
I have a service dog that I train myself and she’s two years old and she goes everywhere with me. I just opened a community center in October of this last year to help neurodivergent families, adults, and children in the New Cumberland area.
[00:01:00] Yeah, I definitely think that us both having similar diagnoses helps us connect a lot. I can often tell her when she’s struggling that my brain works like hers, so I can empathize with her because I say, “I understand what you’re thinking because my brain works that way too,” and I can help her work through the things in a similar way because our brain type is, you know, working in that way. And it can help because neurotypical people don’t always understand how she’s processing or what she’s thinking or how they can help her. So it helps us in that way. But I know it also helps her, like she likes that we have that thing that connects us, like that we’re both autistic, so has that cool, cool connection.
Balancing my needs with my child is a very complex thing to do. Probably one of the hardest things I have [00:02:00] to do, whenever it is something like a sensory need, I have to be very vocal with my child about that. Like I have to say “The sound that you’re making by banging that on the table really hurts Mommy’s brain” or “mommy’s ears” even. It can be a sensory thing, but I have to really explain it. I can’t just say “You’re being too loud,” ’cause she doesn’t really get it. But if I explain that it’s a need of mine, and I tell her in that way, she, is able to kind respect that and work with me because I would do the same thing for her.
So I kind of have to be expressive about my needs. It can be a little difficult because I have POTS. And sometimes that will take over my full body and I will, pass out or get close to passing out and need to go on the ground and need you know, to get cold air and cold, um, [00:03:00] ice and things like that.
And my daughter, even though she is autistic and has ADHD and sometimes struggles with her own care, she sees me doing those things and she does help and she does reach out. And so she already identifies that like some of my needs are health needs and that I’m not putting them in front of her, and we kind of have this balance.
It took a really long time to get there because she’s older now. We have gotten to that point, but at first there were a lot of times where I couldn’t choose my own needs in front of her. And I did have to, kind of put her first when she was younger, but now that she’s older, we can communicate about that a lot and I can explain to her that I don’t want to, you know, be having these health issues. And there are things that are out of my control and there are ways we can like work together to get through them and it helps her understand.
[00:04:00] That has been a balancing act that I think I am going to have to work on forever. Implementing a lot of strategies and tools have been helpful. We have a weekly calendar on the fridge that, everything has to be, you know, updated every Sunday, even though our weeks kind of look the same. It helps my brain to go through it.
It also helps me to prep my daughter. If there’s anything different happening that week and it helps us to get on the same page. And then, when we’re going through the week, sometimes she looks at those calendars, but a lot of times that is more for me. There are things like the daily school pickup time and drop off time that are hard for me to remember because of my brain differences.
So that’s something that has to be written on the fridge. My daughter for a long time used visual schedules, before she got the hang of her routine , and, that [00:05:00] helped us all to stay on task and I was using a lot of tools like, visual countdown timers and visual clocks to show her that she had this much time left to do this task.
And, I taught her the tasks one by one, so that way, she could learn how to do them. And in doing all that, it helped me to teach myself. So there was a lot of, executive functioning skills that were learned together at the same time. So that’s really helped us to, stay on top of things and I’ve had to implement things, for my child and then utilize them myself, if that makes sense.
Such as having a snack drawer with prepackaged snacks because I might not remember to plan ahead and have the snacks prepared, like fresh cut fruit in the morning for the day. So she has access to a snack alternative, but I have access to that snack alternative too. [00:06:00] So we’ve made these adaptations that she utilizes and I utilize, and we’ve just kind of shifted our lives a little bit to make everything easier. There are a lot of labels at our homes on the drawers where her clothing is. But I also have labels on the light switches to help me remember which is which. So these adaptations go throughout our home and we all get to use them, the sensory spaces in our home, I get to utilize them too.
So it’s, you know, kind of again, another full circle thing that we’re all, we’re all working together.
As soon as we had an idea that Fiona would be, could be autistic or have ADHD, we looked into occupational therapy and that was something we’ve been doing since then. And that makes the biggest impact. That’s what I recommend to everybody, because it helped [00:07:00] her work through emotional regulation and physical things that she was struggling with. And it’s helped her work through feeding adaptations. It’s really just helped with every aspect of her life. Like when we encounter a problem. We all work through it together, like with the occupational therapist. She works with them, she communicates with them well. And she also gets occupational therapy through the school district.
And she’s gotten other kind of therapies like talk therapy. She’s in counseling therapies. And all of those things have helped like tremendously. If she didn’t have those, we wouldn’t have the amount of growth that we have. And those are a lot of them are community resources. The ones she gets through the public school are more focused on education.
So a lot of these we’ve sought out and like maintained on our own. And then we also really find a lot of strength in the parenting community of finding other parents that have [00:08:00] neurodivergent kids. Whenever my daughter was younger, I started a gentle, I didn’t start, but I took over, facilitating a gentle parenting group, like a natural parenting group.
And a lot of the kids there were more neurodivergent and the parents that I connected with, they understood that not everything that worked in the parenting books was gonna work for me and my kid, and they were accepting of that, but that was really, really hard to find. And as my daughter got older and I, that group kind of changed with people’s ages. I didn’t really have anything. So I started a parenting support group and I’ve started a lot of different programs through the center now to create a community because I saw that my daughter wasn’t gonna have that, and I didn’t have that as a parent. And there wasn’t as many, like group community resources like that.
And I think that that’s what’s helped us to thrive because [00:09:00] not only are we working on like our customized parenting experience, but we’re getting to talk to all these other parents then and like communicate about their experiences and see how things are working and get ideas from them. So it really helps to strengthen things.
Because like what we’re teaching these kids in occupational therapy isn’t like all they need. They don’t get that and then go home and then that’s all like, it’s a full circle thing. We have to be all working together and parents have to be, you know, all involved. So it’s just, it helps to have that full communication and care.
My biggest piece of advice is to, remember that, I mean, this is a classic saying that everyone’s gonna say, but remember that not every neurodivergent kid is the same. Not every autistic person is the same.
Not every ADHD person is the same. There’s gonna be so many variations in our brains, which [00:10:00] means we can’t look at everybody the same. We can’t treat everybody the same, like as far as like a treatment plan and like the way adaptations we put into our lives. Like all of those things are gonna be different for each child.
And it’s really important for parents to understand that they have to like learn about their kid and find that. And it’s not going to just, there’s not gonna be a fix. There’s not a diagnosis and a medication and a fix. It’s gonna take like a lot of hard work and. And customizing your child’s like experience and it is really hard.
I think that’s a, that’s a big thing for parents to remember too, that it isn’t the normal go, it’s not the normal experience that people write about, that people show in movies. It, it can be more challenging in some days, but it’s worth it still.