Parenting and Disability

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse.
You should do a show on disability and parenting. You know I'm always open to pitches, so I was pleasantly surprised to get pitched this particular idea and by my mother no less. She, like many others in her position, had needed to parent a child with a disability. She needed to figure out what to do as she went along. There was a lot of well-meaning advice, but she had to modify what milestones looked like and how to define success. Parenting is never straightforward, but it can become especially challenging and I suspect rewarding when parenting a child with a disability. Today, we discuss disability and parenting. It's time to put your finger on the pulse.
Hello and welcome to The Pulse, Sonny in my audio. I'm Joeita Gupta and I'm joining you today from the studios at Accessible Media Inc. in Toronto, and I'm sitting in front of a black background with some multicolour checks and that is what you see behind me and I'm wearing the blue sweater that I really love and it's a bit like a hoodie and it's got a zip down the front. It's full-sleeved, really warm and toasty, and my hair is in its usual ponytail. Although I've been saying now for weeks, I'm going to try a different hairstyle and I promise you I will get to it someday, somehow. Certainly, my mom has been saying for a while, "You should put your hair up in a bun," so I might do that if I'm not quite as lazy as I have been. Today, we're talking about disability and parenting.
This show, of course, I'm putting together because my mom asked for a show on disability and parenting and she so rarely asks for something it was the least I could do to make her happy. I have a great guest for you today who also happens to be the parent of a child with a disability and is a person with a disability herself. My guest today is Jessica Minor. Jessica Minor is director of Community Engagement at Accessibility in Indiana. Jessica is also a person with a disability and the parent of a child with a disability. Today, we're talking about disability and parenting and why there are so few resources for parents of children with disabilities. Jessica gets into some of the know-how and expertise she's gathered given her lived experience and the importance of community for parents of kids with disabilities. Jessica Minor. Hello and welcome to The Pulse. I am so delighted to have you on the program.

Jessica Minor:
Thank you so much. So excited to be here.

Joeita Gupta:
Tell me a little bit about what got you interested in talking about disability and parenting.

Jessica Minor:
Yeah, so what really got me interested is when I had my daughter, we knew that she, in utero, we knew she was going to have the same disability as me and ever since she's been born, or I guess before that, I really felt a connection to just moms in general, parenting in general. I feel like I found my niche with that, but then I discovered and I have continued to discover throughout this whole journey that there is not a lot of resources out there for parents who have kids with disabilities and it can be so isolating. I have tons of friends who have kids but none of them have kids with disabilities. Finding that other community of parents has been so helpful, not just in sharing the trials and tribulations and successes with our children, but also kind of like parenting hacks and resources for kiddos as well.

Joeita Gupta:
A lot of parents have anxieties around making sure that children meet all the right milestones at all the right times. How did you negotiate that conversation about milestones, especially if it got to the point where your daughter wasn't meeting a milestone at the stipulated correct time?

Jessica Minor:
Yeah, that is such a great question. I recently talked about this with someone else, but I learned very quickly to throw that parenting book away and stop looking at what the normal milestones were because my daughter wasn't going to reach that at that set time. Reading about that, looking on social media, all of those things was not going to be helpful for me so quickly, we pushed that aside and focused on what she was successful in and celebrating just each milestone as they came. Obviously, it's important to reach those milestones.
A lot of her delays are in the gross motor skill development and so we work with our pediatrician. We have a physical therapist that she sees, and so if they say there's a concern, then obviously we're going to address that, but we're all focused on her just reaching those milestones when she's ready and not pushing it. It definitely was a learning curve, especially when she was first born and being like, all right, she's not going to roll over when they say babies are supposed to roll over, she's not going to crawl when she's technically supposed to, but when she does, it feels like an even bigger win for us. We're still working on walking right now she's two and a half, but she's getting so close and so I know when she does get there it's going to be a huge celebration.

Joeita Gupta:
You mentioned earlier that your child has the same disability as yourself, and I guess I'm wondering how much of a surprise it really was when you found out about the diagnosis and also, whether you feel in looking at your experience that it might be easier to parent a child with a disability if the parent themselves have a disability or does that not really factor into the conversation?

Jessica Minor:
We knew that there was a 50/50 chance that she would have the disability and the same disability as me. I think we were still obviously not as surprised as if it had just been a random event, random mutation, but considering we knew how high of a risk there was, we were rather surprised still for whatever reason. Once we got the diagnosis, it was kind of a day of processing and then it was like, okay, we got it. We're going to move forward from here and now do everything we know how to do to advocate for ourselves, for our child and get all the resources and information we need. I think to some level it is easier because I don't have to read up on the diagnosis. I already know what it is. I more or less know what to expect. Sure, I don't remember what it was like when I was two years old having this disability, but I know what to expect, how to grow up with having a disability, and so I can pass on not only that knowledge, but those advocacy skills that parents, it's not something you're born with.
As a parent with a child with a disability, you really have to become a really strong advocate for your kid and for yourself. That's something that I've always had. That was a skill I had to learn. I knew all the doctors she needed to go to, so that was easier. I knew the very questions to ask. In that regard, it is easier as a parent with a disability. However, also challenging because of, I would say the biggest thing is the societal bias that we see and experience as people with disabilities just in general.
My husband also has a disability, so it's not just me and our daughter having a disability, but it's the whole family and navigating society's views on what parenting should look like on access to things, on just kind of everything and making sure that people take us seriously as parents and know that we are just as good of a parent as anyone else. Kind of challenging society's views on that. I think it's been the biggest challenge. Then obviously, society isn't built for people with disabilities, so finding the right stroller or crib or things like that to be accessible for me and my husband so that we can utilize the tools we need to care for our child as well.

Joeita Gupta:
About a year ago, I want to say, I had as a guest on the show, a researcher who wrote a book about disability and kinship relationships. When I was talking to Jennifer Natalia Fink, she pointed out that for a lot of parents of children with disabilities, there's a moment of shock and trauma where you are confronted with this diagnosis, but what a lot of people don't realize is that the disability history already exists in your family, but families are often reluctant to talk about that history in an open way, which is why for every parent with a child with a disability, they experience this moment of acute isolation and feeling like they have to go it alone. Do you think she has a point? How much does the silence in families contribute to the sense of parents of children with disabilities feeling overwhelmed and feeling like they're the only ones dealing with this problem?

Jessica Minor:
Yeah, I mean, I definitely [inaudible 00:10:28] that's a huge thing and even within my family and me growing up with a disability, there's definitely not a lot of talk about disability in the family or things like that. It's very taboo, but I think all we can do moving forward is change how we do things. Our daughter is always going to hear about disability, always going to hear about the family history because it's so important and not just with disability, but with so many other familial things that come up within that history. It is very isolating and it's hard to talk about things within family and the way I parent is certainly not the exact same way my parents parented. Kind of filling that gap and bridging that communication is different, and I think really the key is to find that community and those people that you can lean on, and that doesn't always have to be your family.

Joeita Gupta:
I'm going to come to that point about community in a couple of minutes, but I wanted to go back to something you said earlier about being an advocate for your child with a disability. Often, when children are very small and they have disabilities, it's not the child who's doing the advocacy for themselves, it is the parent that's doing the advocacy when they come into contact with the healthcare system. I'm thinking especially about education. What are your strategies that you suggest for parents or children with disabilities to fill that advocacy role quickly? Because there's a lot that parents have to learn very fast.

Jessica Minor:
Yeah, the biggest thing I would say is trust your gut. If something does not feel right, it's not right, and don't be afraid to speak up. The doctors don't always know more than you because at the end of the day, you are the parent and what is best for your child. I know I've been there where you go into a doctor's appointment and you have all these questions and then they throw all of these medical terms at you and then you get overwhelmed and then you forget all the questions you had, so write them down. I always make a list of questions before I go into a doctor's appointment, even if I think they're maybe silly questions, I don't care. I want all of my questions answered. It is the doctor's responsibility to sit with you and make sure you are 100% comfortable and have all your questions answered before leaving the room. Speak up and if you don't get what you need, make it clear and known to whoever you need to so that you are and your child is getting the care that they deserve.

Joeita Gupta:
I think your daughter's a bit young for school, but one of the ways in which my mom was a tremendous advocate for me was within education, both her and my dad, but I would say especially my mom really went above and over making sure I had access to the best possible education. There was a real push to try and send me to a vocational school or to send me to a school for the blind, and my mom at the time said, nothing doing, I wanted to go to a mainstream school and learn with everybody else, but that meant that she had to do a lot that other parents didn't have to do. First, she had to convince people to admit me to the school, but then she had to read things out to me and transcribe books into large print. She did a ton of things that the parents of a child without a disability didn't have to do. When we think about the education system in particular, what role does the parent of a child with a disability play in ensuring that when it comes to schooling your child has the best possible experience?

Jessica Minor:
I think parents play a huge role and unfortunately, play a huge role in having to advocate to the school what their child needs. I think the school needs to, schools in general need to be better at understanding accommodations and how everyone learns differently. Just because someone with a disability needs an adaptation doesn't mean that or accommodation doesn't mean that other kids without diagnosed disabilities aren't going to need those accommodations as well. I think we have a ways to go with that, but parents do play a huge role and shouldn't be afraid to speak up with that. Yeah, our daughter's only two and a half, so she is not in regular school yet, but even within the daycare system, she goes to daycare full-time.
I've had to advocate for her needs a lot. Even doing the daycare search, a lot of schools told me, "Well, if she's not walking then she shouldn't go here or can't go here because you know toddlers, they're rough and tumble," and it's like, yes, I do know this, thank you. What I didn't realize is that daycares are not actually allowed to tell you no. I think it's knowing your rights, getting talking to people, if you're not sure what those rights are and advocating and not stopping. It's exhausting, but we have to do it as parents.

Joeita Gupta:
I want to pick up on this idea at about advocating and not stopping. We know that there are a range of disabilities and sometimes when your disabled child is an adult owing to the nature of their disability and the fact that the world isn't designed for disabled bodies and minds, you might have parents who are a lot more involved in the lives of their adult kids with disabilities, and yet you might have other parents of children with disabilities who feel like they need to take less a role in the lives of their adult kids. How do parents make that decision about when to stop parenting in a more active way?

Jessica Minor:
Well, I think I'll be able to answer that best [inaudible 00:16:49]. However, now for me and the work that I do, we are always striving for independence. Obviously, 18 is the legal age of being an adult. However, I think to an extent that needs to, especially for a lot of kids with disabilities, that needs to start a little earlier because you have to teach them how to advocate for themselves, how to call the doctors they need, how to know when they need to call a doctor, and transferring that independence of medical information to them as well as being able to speak up for themselves. I think parenting kind of lasts forever, but we should really work on whatever independence looks like for the individual child and work towards them doing that at whatever age feels most appropriate for that kid. I mean, obviously, I don't think when they're 12 or 14 they should be completely independent, but I think we should work towards that, especially when they get towards 18, 19 and things like that.

Joeita Gupta:
That's a really good point, and it might seem counterintuitive because you want to keep an active role in your child's life for as long as you can, but you make such a good point about recognizing that there are additional responsibilities that a person will have as a person with a disability and that parents almost need to take a step back earlier than they would have otherwise in order to better prepare a child to live independently as an adult. It's honestly something I hadn't thought about before and I suspect my mom hadn't thought about before.
One of the things I wanted to ask you about as we sort of work our way towards a question about community, oftentimes, as I said in my opening essay, there's a lot of well-meaning advice and a lot of pressure is put on the parents of kids with disabilities, from the parents of able-bodied children and not in a malicious way, but you know, concerned that she isn't doing X, Y, Z or have you tried doing A, B or C, I heard it's really good for her eyes. When you get into that kind of a situation, what is the best way for the parents of able-bodied kids to be allies to the parents of kids with disabilities?

Jessica Minor:
Yeah, the best way to be allies is to stop asking those questions and instead ask curious questions, right? I don't want to hear from someone that, "Oh, drink more calcium. That'll help your daughter's bones," right? Yes, that is common knowledge and also not going to cure her. However, being an ally is not only educating yourself but also, teaching yourself and teaching your kids and your friends and your neighbours how to be a better ally, better supporter. Use inclusive language, learn about inclusive language, change your behaviours and your attitudes towards disability, and that in and of itself is going to make you be a better ally and understand kind of what someone might be going through without asking those unsolicited parenting advice comments. I think just educating oneself as a parent without a kid with a disability in disability and making your kids not afraid of disability and encouraging them to ask questions and have friends with disabilities and read books about disability and all of those things, and integrating that kind of information into your life just generally is the best way to be an ally.

Joeita Gupta:
Now, you also run a monthly support group on Zoom for the parents of kids with disabilities. Tell me a little bit about how that got started and what you talk about when everybody gets together.

Jessica Minor:
Through accessibility, we've been building some support groups that generally really came out of the need for community, especially during COVID, but I just as becoming a parent and becoming more involved in our daughter's activities, I just realized there's not a lot for parents with kids with disabilities just for disabilities and just to talk about disability. I told you earlier, that's my niche, that's like my passionate area. I said, let me start this support group. Everyone that I've talked to so far has said like it's a huge need or I've heard so much stressors from parents and I'm like, this would be a great place to just talk about those things.

Joeita Gupta:
Mm-hmm, and of course, if it's on Zoom, then people can join not just in Indiana and across the United States, but they could join from Canada, from UK, just about anywhere. We only have a couple minutes left, but can you let us know how they might join the parenting group if they wanted to sign up?

Jessica Minor:
Yeah, so all of our information is on Eventbrite, so I think if you just Google parenting disability and accessibility, it comes up and you just hit register. It is free and for anyone, and then it'll send you the Zoom information.

Joeita Gupta:
When we started talking, you said there aren't a lot of resources for parents with disabilities. Do you think it's time to write a parenting book exclusively dedicated to parenting a child with a disability, or do you think that that's a bit of a pipe dream because people's experiences with disabilities are so diverse and so individual that you can't really envision a parenting book being of much help to such a diverse community?

Jessica Minor:
I think it's definitely time, and I think it's time for a bunch of different people to come together with their own experiences and write something, because information's always changing, but we got to start somewhere and so might as well start there and then we can always write more books.

Joeita Gupta:
Hey, that sounds great. We know what your next project will be, and I know you're busy enough as it is. I should have mentioned that Jessica Minor is in a car driving in between meetings, and here I am giving you more things to work on, but it's really interesting to chat with you about this, and I know we can definitely talk more about parenting and disabilities. I know, I mean, I feel like we could have gone much longer, but Jessica, thank you so much for speaking to us today and chatting with me a little bit about your experience and also, chatting about the online support group that I'm sure people will like to join if they have a chance.

Jessica Minor:
Thank you so much, so glad to be here.

Joeita Gupta:
Jessica Minor is the director of engagement at Accessibility, and of course, as you've heard, a parent of a child with a disability, also a person with a disability who is very passionate about parenting and disability, as you could hear from our preceding conversation. We would love to hear from you. If you are a person with a disability and you want to share your stories about how your parents came through for you, ran the extra distance, or maybe even some of the parenting tips and tricks that you might have picked up along the way as the parent of a child with a disability, we would love to hear from you. You can find us a couple of different ways. You can give us a call at 1-866-509-4545. That's 1-866-509-4545. Also, remember to give us your permission to play the audio on the program.
You can find us on Facebook. Of course, I look for Accessible Media Inc. or you can find Rhe Pulse on Facebook. Also, The Pulse on AMI audio has a Facebook page, and I do occasionally check the Facebook page and I check the messages, so please find us there. You can get ahold of us on Twitter @AMIAudio. Use the hashtag #pulseami, and of course, if you want to find me on Twitter and follow me on Twitter, I'm @JoeitaGupta. You can write us an email feedback@ami.ca.
That's going to wrap it up for today. Our discussion on disability and parenting just flew by. I hope my mom was happy with it, but it was great to have the opportunity to present some programming based on an idea that was pitched by her. I would also encourage you to pitch your ideas to me, any of the ways that I talked about above. You can always reach out and let me know what you would like to hear and see on the program. Our videographer today has been Matthew McGurk. Marc Aflalo is our technical producer. Ryan Delehanty is the coordinator for podcast at AMI-audio, and Andy Frank is the manager at AMI-audio. I've been your host, Joeita Gupta. Thanks for listening.