Empowering Parents

Originally presented March 15, 2021

By Sheila Adamo

During this talk, we will discuss the difficult task that parents have of meeting the needs of a child with visual impairment while taking care of themselves. We will provide practical tools and techniques to assist with realistic goal planning and self-care. Parents will develop a deeper understanding of their own emotions and how they impact their parenting choices and the ability to be a healthy role model for their family. Professionals will gain insight and tools to assist parents along their journey.

Transcript

Sheila Adamo

Okay, welcome to our Lighthouse Guild presentation evening. We are glad that you’re here tonight to talk with us. Today we’re having myself present. I’m Sheila Adamo, I work with the Lighthouse Guild, and I also work with the National Organization with Albinism and Hyperpigmentation. I also work at a mental health center doing individual and couples counseling.

I have been around the low vision field for over 20 years as a volunteer, a professional and a parent.  So, I have a 23-year-old son with albinism, so I have been around, like I said, this community for a very long time. So, this is a very important session in my eyes. And I feel very passionate about this. So, when I talk about empowering parents, this is what we’re going to kind of go over tonight so that we can kind of get a brief outline.

We’re going to talk about knowing thyself, we’re going to talk about parent emotions, we’re going to talk about the parent balancing challenge. And in order to do that correctly, we’re going to define a challenge, work on how do you to confront a challenge. And it wouldn’t be really a presentation about empowering if we didn’t talk a little bit about self-care and create a self-care plan. So that’s kind of what the presentation is going to look like.

I do tend to share a lot of my own journey and some of my clients’ journeys in the low vision field and some of my feelings and emotions as a parent that I have gone through. The first slide that I really think this is when I think about an empowered parent, it’s really a parent who knows themselves very well, because I think that power comes from within. And knowing that you have the strength, you have the courage to be an advocate, to do the research, to remember what you learned, and then to get the things and to know when to fight to get things that you need for your child to know how to do that.

All of that takes a person who feels pretty confident. And I know for myself, since my son was my firstborn, I have four children, I kind of got, like most parents, thrown into that, of course we didn’t, unless you know some parents do adopt and foster kids and usually that comes with a little bit more preparation. But you know, I didn’t know anything about low vision or albinism, when my son was born, like many people. And I didn’t, believe it or not, those of you who know me, I didn’t really love to speak in a crowd, much less, I would never have imagined myself doing something like this.

So, through the journey of parenting, I really got to know my own story. And own it and know the importance of that because you can’t really expect your son or daughters or family members to have that confidence and be empowered, unless they’re seeing you speak your truth to and have that power. So I kind of found it through the need so that my son would find his.

The next thing that you know, just to kind of look and do like an inventory of your own personal beliefs and values. I can’t tell you what you need to say. Of course, it’s your family, every family is different. That’s what makes the world tick. And that’s what makes everybody so unique and wonderful. But knowing what your own beliefs are and what you value, and kind of working that out inside before you before you try to teach it to your children, that will make it much more successful.

Knowing your successes and challenges. I think anyone that has kids on this call, know that our difficulties are often served up to us on a silver platter by our kids. So like if you have trouble with a certain, you know if you have trouble, if you’re always worried about bullying and if you were bullied and you have a lot of feelings about that, appropriate feelings, we might as parents have all these thoughts and worries about our children being bullied and that could happen but our thoughts and feelings things and our fears might end up might, we might end up treating people differently and might end up making our son – not making but by the way we behave, kind of presenting that to our children in a way that we wouldn’t normally want to do that, because we have unresolved difficulties. I hope that makes sense.

But we also have wonderful successes as human beings and things that we have gone through that have made us the parents that we are and made us, you know, whoever we are in our lives. And it’s important to own that and teach our kids what we’ve been through. Don’t hide that with your children, you know, use that. That’s the resilience.  You know, talk about other times that you were resilient, or grandma and grandpa were resilient, and things that you have gone through, especially in this time. hopefully, you know, with the pandemic, letting the kids know that we’ve been through hard times before, maybe it didn’t look like this, but we are strong, we can do this.

Another thing that, you know, I think it’s helpful when we’re trying to be as empowered and as strong and cohesive as a parent with whomever we are parenting with, to take a look and take some time to kind of define your view on discipline. And I say that because of my own background and journey with discipline, and I wish that I would have learned when my kids were little or actually before that. You know, we all were raised a certain way. And some parents, you know, yell more. Some spanked, some didn’t. We all have our own journeys. And those did shape who we are today.

So, I feel like I read all these books, of course, because of I was a social worker. So, I was reading these books on best parenting skills. And if you’ve ever walked into a bookstore, I’m sure you look on the wall and the parenting books are overwhelming. There are so many different approaches. And every time I was struggling, I think I went and bought a new one, and I’d read it, and I tried to do it, and I’d come home, and I’d tell the kids, you know, we’re going to do it this way. And I’d have my book out. And I’d create a little chart because that’s what this book said.

And all of that is good. But what I didn’t value then was my own personality, my own way of doing things. I’m not a chart person. I don’t like doing them. And so, every plan I ever made with a chart, it always ended up failing. So, what I’m just saying in here is, value who you are, and make more of you, you know, learn from your challenges, but don’t hide that from your kids, either. And if you find you’re having trouble with a certain behavior, or certain things, you know, get, seek some help. Talk to somebody if it’s overwhelming, or, you know, talk to your partner or friend.

We all have different educational backgrounds, I already kind of said that. Depending on how old your child is, we all have triggers. And it’s important to know your triggers and know how you respond. Our kids can trigger us in all different ways. And with the wisdom becomes power. And if we know it, then we can control the way we’re triggered so that we’re more empowered to stay the course and parent the way that we would like to instead of parenting out of strong emotions because we’re triggered.

And then we’re going to talk – the next slide, we’re going to really talk about feelings and how that impacts our parenting. And then take a look at your friendships and your support systems and make sure that you were supported as a person. And with that, I would just like to say all of us obviously on this call either have a child with a visual impairment, love a child with visual impairment, or work with kids with visual impairments and parents. And I wish that as a parent now that I was more prepared for the journey of self-doubt that I had and a little and we’ll talk about the anger. These are all these feelings that we come up with, within our friendship systems of our friends that maybe we grew up with

or maybe even our siblings that are having kids at the same time that don’t have visual impairment, or whatever the diagnosis that we’re dealing with. I wish I was a little bit more prepared at the time to deal with that, because it did weigh on me, and I didn’t know what to do with those emotions. So, acknowledging that that might be happening to you, or people you love, or a parent that you might work with, it’s important.

So those are all the things that make us who we are, and make us into the unique, empowered person that we are. And then I just like this slide – so you know, making the decision to have a child is monumentous, it’s to decide forever to have your heart go walking around outside your body. So now we’re aware of ourselves. And now oftentimes we have this little baby who is unprotected, so then we are jumping, and now there’s a visual impairment. So sometimes we want to build a wall around them, and no one’s going to hurt this baby, or no one’s going to hurt my son, and no one’s going to bully my son. We’re going to give him everything that he needs to be successful. And all of those are good things. And we’ve just got to acknowledge that we might over respond at first because, because really out of love.

So when I talk about dealing with parental emotions, and this is for the parents, obviously, if you work with parents, it’s really important to acknowledge that, you know, to get yourself to an IEP, or a family meeting, as a parent, that person sitting across from you often has all of these feelings wrapped up into someone who’s trying to smile, and trying to advocate the best that they can for their child. So just even acknowledging that if you work with parents and letting them breathe and acknowledging that they might be going through their own journey, I think would probably be helpful. Because some of the emotions that we as parents need to learn to deal with so that we can be a strong advocate, so that we can be there for our child, when they are talking about their visual impairment and talking about their differences that they have with their peers and learning all those fabulous skills that the ONM and the TBIs and all of the people who help our children give them, in order for us to do that successfully as parents, we need to come into it with these parental emotions in check.

So, I’m just going to go over them fairly quickly and then talk a little bit about him. So, fear, fear is a really strong emotion. I know we had people with all different age or kids signing up for tonight. So, a newly diagnosed fear is much different from a fear of someone who is, you know, in their 20s and moving out of the house, but it’s still fear. And it’s still a parent fear that we need to control so that we’re not projecting it on to our child.

So, for example, my son is getting ready to go and move across the country for college, or graduate school. And I am just full of fear, like seriously, I know I am, but that I also am very aware that this is mine, and I’m not sharing that with him. Because, you know, for the adult child, our fears might, if I don’t have a grip on them, it could come off as I don’t think that they can do it, or I doubt that they have the skills. And as your child grows up and starts being independent, even as early as two, as early as four and six, and they each step away from you, depending on their visual impairment, there is going to be a lot of fear about them entering in the world without you walking with them or them learning to walk with a cane or using a dog. There’s so much fear wrapped up in parents and all that it’s really important to acknowledge and then to deal with as it comes up. So you might need to be talking to TBI separately, you might need to be, you know, talking to people who love you and can support you.

And guilt is another strong parent emotion that all kids, I think they can sense it. And they know when you’re feeling guilty. And if you have a teenager, you know that they know exactly the right time to ask questions and things that they want, because your guilt might be running high. Or your kind of depleted in energy, so we’ve got to deal with our guilt.

And then sadness, you know, it’s not one and done with sadness. Having a child anytime, but then a child with a special need. There’s times in our lives that we get sad as parents, and oftentimes preparing for meetings, and oftentimes, asking for help can stir up all of these emotions once again. And again, as a parent, it is our responsibility, that is our sadness that is not on our children. So really figuring out a way that you can work through that sadness, acknowledge it, work through some of your doubts, and get support if needed.

The other very strong emotion that I know most parents have is anger. I don’t think we’d be normal if we weren’t angry at some point about having to see our child struggle, maybe more than their sibling, or more than their friend or angry at another child who leaves your child out of something or angry that you have to work twice as hard as some of your other mom friends to get the same result. So, again, with anger, it’s a strong emotion. So, we need to provide our space to acknowledge it, and get the help if we need to work through it. 

And then, of course, we need to make room for happiness. And that’s wonderful. But of course, if we don’t deal with all these other emotions, our happiness is going to be a little muted. We might not even know it; we might be going on autopilot for a while and not knowing that sadness is creeping in. So, we need to be in touch so that we can celebrate the joys and really experience the wonderful things about parenting and the visual impairment. The wonderful ways our kids see the world differently. And we give them the strength and the power to know that we believe in them and that they can do anything they would with a few of the adaptations. Okay, that’s the heaviest slide. So, we’re gonna move on. 

This is just what I kind of imagine when I think about parenting and all of the challenges in it. And I kind of feel like there’s a challenge and then there’s self-care and self-care is a very big word. It’s not I’m not speaking of going to get a pedicure. I’m not speaking of you know, having a manicured hands and or a massage. I’m really speaking of ways that I just talked about. How are you taking care of your emotions, your relationships? Are you working as a partner with whomever you’re raising your family with?

So I kind of see like, when you see a big challenge coming, it would be helpful kind of to see it as a scale because then you can say, okay, I have this huge meeting coming and I’m preparing and I’m preparing for it. Maybe I need to pick up my self-care a little bit. So maybe I need to, for me, I need to go for a walk if I’m getting stuck, or I need to talk to my husband. Sometimes it stirs up emotions getting ready for these things. Or share the load. Ask somebody to help you, you know. Have a family member or friend or you know, a support person that you don’t have to do everything with. 

Okay, pretty soon we’re going to take a break. I’m just going to go over the challenge side, and then we’re going to take a quick break. So, in challenges, I just kind of listed a few but I do kind of see it like this teeter totter thing that we load up and we load up and we load up and then we you know, we think we’re doing great and then when we get one little extra challenge. And that challenge doesn’t even have to be a hard one, it’s just that all of these other ones are underneath us. And one thing puts us off kilter. And then we make might lose our own coping skills and our own voice for a little bit. 

So, just to go over anything of these challenges that can be sibling, school, medical needs, workplace, extended family, friends, church, financing, partners, and then taking care of yourself. And then let me go to the next slide. So, what I found is really helpful working with parents and myself, because I am a parent obviously, is sometimes we get so motivated to solve a problem, that we don’t take the important steps of really defining what the problem or the challenge is. And when we do that, one, we don’t honor our own feelings and emotions. And two, we might be solving something that doesn’t address the core root of the problem. 

So, in defining the challenge, what I found is helpful, and this can be helpful depending on the age of your child, I really think even at a young age, you can pull this out. And, you know, even with an easy challenge, like playing a game or losing a game, you can say okay, and you can get used to talking in these terms, because it is empowering to own when you clearly define a challenge that’s really empowering for you and for whomever you’re talking to. 

So, let’s talk about, first you say my challenge. So, let’s say for the course of this call that your challenge is, because we’re in a pandemic, let’s say, because our kids with visual impairments aren’t getting their needs met through the online school. I know that visually they’re fatiguing. You don’t feel like they’re getting – the vision services had been backed out. You’re feeling in a corner. This is a huge challenge, right? And oftentimes, unless we pick it apart, we’re gonna go barreling in to try to get everything and not clearly own it. So that’s the challenge. 

And then the next step is how do you feel when you think about this challenge? So this is those I statements and those feelings. You know, I feel overwhelmed. I feel scared that my kid’s slipping behind everybody else. I’m angry that he has to work twice as hard as the others at school and he’s not understanding it. I know some kids, well, the parent feels, they hear a story about something that happened online, and then anger could really get intense. So, you have to acknowledge it before you try to solve that problem. And again, try to distinguish between your feeling and your child’s feeling. If it’s your anger, that’s your responsibility. So, before you go running in, you need to kind of deal with that in any way that you can. 

And then in order to deal with it, you have to kind of address you kind of got to dig deeper into it and say, what thoughts am I having when I think about this challenge? This can be a very quick thing, or it can lead it can spiral down fairly quickly. And you can actually see how angry you might be and that you haven’t dealt with in a very long time. So, in this in this situation, maybe if I’ve kind of been going on automatic pilot and moving along and not dealing with my own anger at times, I might be thinking this school doesn’t care about my son. I’m not a good parent, because this is happening. Why can I stay home and help my son? Why do I not even want to do the schoolwork? I have no interest in learning math again. 

So, all of those things are really important, you know, and oftentimes once you start paying attention, the thoughts can kind of spiral down we call it into maybe I’m not strong enough, I’m not good enough. This is all on the parent. And we want to get at those thoughts if you’re having them so that you can be empowered, right? We don’t want you feeling responsible, and we don’t want you not feeling empowered and strong when we’re trying to solve a challenge. 

And then the next thing I want you to look at is how are you currently behaving when you’re confronted with this challenge? Our kids are really smart. They pick up on our voices, they pick up on our behaviors, they pick up on everything. Even very little kids do, and especially these visually impaired kids. My son, one of four – the one with the visual impairment, he always knew even from a very young age, he could tell in my voice. Now, he couldn’t tell me he was doing this, but I’ll tell you what, when I was starting to get a little upset about something, the first person to leave and go downstairs and stay away from me was my son. He knew. He was very smart. And he could tell in just a tweak of my voice that I was having a hard time. 

So, for me to look at how am I behaving, am I talking too much? That’s a key for me. I mean, it’s kind of funny, because I’m talking a lot here. But like, with my kids, if I start to over explain. I’m responding from my feelings, not from the situation. So, it’s important to look at that. So if we look at what how you’re behaving with the IEP process, everyone’s different. Are you sending multiple emails? Or have you escalated very quickly to the principal? Or are you avoiding or you’re not doing anything? Everybody’s different. So, there’s no right or wrong, it’s just knowing who you are so you can address those if you need to. 

Okay, so now we’ve kind of filled this out. And again, this can be used for kids very, very nicely. Then confronting your challenge. So, you take all that from the other page, and then you make a statement of challenge. So, I feel overwhelmed, insecure, scared and angry, that my son’s needs aren’t getting met at school. I feel that, and then I could get a little bit more detailed and exactly how his needs weren’t being met, let’s say. So, that’s different than just barreling in. What can you do about it? So now you’re sitting down, hopefully with one other person. And you’re saying, what can I do? What is in your control and what is not in your control? You cannot control the pandemic. You can control your behavior and your kids’ behavior, hopefully. So, what can you do? You can ask for help, you can send emails, you can call a meeting. Those kinds of things. 

So, then, what do you need from others? So, this is an important one. And you know, like, if you’re a professional working with a family, you can always kind of bring this out to empower your families that there are things that they can do. There are ways that you can help them and narrowing it down and letting them take steps. Know that there are steps to be taken that they can be supported. So, what do you need from others? You know you might need your partner to go to the meetings with you. Sometimes it feels like you’re all alone. So, pull in people. Sometimes there’s people waiting, and they don’t know so they don’t ask. So just asking people to help. Grandparents are good for that if they’re available. 

I know one good thing about Zoom IEP is that one parent was telling me the one thing that was really nice is they could call all their professionals and it was more of a team because they also could call their parents, so the grandparents of the kid. And so, they had some other eyes, that it wasn’t just them sitting in a room full of professionals, and sometimes that can feel overwhelming as a parent. 

And I even broken this down further. How do you find others? You know, the Lighthouse Guild? Are there people that you can reach out to or are there organizations that are like these support groups and other local groups that you can reach out to? How do you find people that you can talk to?

And then, taking all that information and making an action plan. So in doing that, you can you know, it’s of course, it’s your choice. So, you can say, well, this is what I need from others, but I don’t like this person. This person I want to go to. So, this is where your empowerment comes into you. Then you’re going make a plan. I feel to address these needs, I’m going to ask my husband to come to the meeting. I’m going to reach out to my son’s TDI, tell them how I’m feeling, tell them that I’m overwhelmed, share something. Whatever the action plan is that you need. I might have to reach out and get an advocate for me if it’s not going well at school. So, there’s lots of things that that you can do to empower yourself. 

So now we’re going to talk a little bit about self-care. And this is the practice of taking on an active role in protecting one’s well-being, and happiness, in particular during periods of stress. That’s the definition. It has been way overused in society. I think it has been kind of trivialized. And I think the best gift that we can give all of our children is having them observe us do self-care, knowing that it’s self-care. If your self-care happens to be a physical exercise, talking about why you need to do that. I’m a lot better when I go out for a walk, or I’m like, when I was a little bit younger, I was a whole lot better when I was doing exercise classes and doing this stuff. And I would tell the kids, you know, like, hey, I know, you might not want to go to the gym with me. But this is something I need. I need it for my mental health. 

And I think that’s a good gift to give all children is, I’m taking care of myself. The emotional piece that we’ve talked a lot about. The one other thing I’d like to say about that is taking care of yourself is not engaging in emotional discussion when you’re unable to do it. And as a parent, we have the right and to say things like, hey, I need to think about this. I’m going to talk about I’m going to talk to you about this tomorrow. If you’re really upset about something that’s happened or really sad – any of those feelings. It’s okay and it’s a good message to send your kids that I need to think on this. I want to give you a correct answer or correct consequence if something had happened. So, I’m going to think on this and let you know tomorrow. It’s also okay if your kids struggling if they’re safe and struggling and you’re not in a good place to tell them, hey, I need 10 minutes, I really want to hear what you’re going to say. But I need to get myself in a place that I can listen in. What a gift you’re giving your children. You’re teaching them that when you’re present, you’re really present. And you’re in charge of your own emotions, and they’re in charge of theirs. So I implore you to start thinking like that. And as your kids get older and start sharing information with you. The other trick that I had to out loud practice saying is, do you want my advice, or do you just want me to listen?

Many times, they really just want you to listen. And, if you know that going in, then you can listen and you can watch yourself. You can say, oh, I’m getting really angry that someone treated them like this. But, if you don’t listen to your child, that they just want to share this with you, they’re going to stop sharing. And we don’t want that. So, I think it’s really important that you ask their permission. Now, if you hear something that you need to address, that’s different. But, if your child is just really upset about a situation with a friend that is making you really angry. If you want them to tell you that again, you need to listen to what they want you to do. you can ask, you know, would you like me to help you address this issue? Do you want to know what I have to think, what I’m thinking? 

But, if they say no, you need to start respecting that. So that’s how you’re taking care of yourself emotionally, and your child because I don’t know about you, but if you engage in that conversation and you’re not in a good emotional space it never goes well. You’re not addressing the core issue. And the anger or whatever strong emotion you had usually takes over. You can hand them the sheet and tell them to fill it out, and you’ll talk about it in the morning. And then you have to build the trust. If you say you can’t do it, but you really want to know, you really do have to make sure you you don’t forget and that you go back and check in with them. 

So, real quickly, we did these, the self-care broken down into emotional, physical, spiritual, mental, practical and social. I really don’t care what you call it, I just really want you to look at your own. I really just want you to look at your own habits. And, are you being the model that you want your child to be? Are you doing the behaviors that you’re expecting out of them? You know, if you expect them to read books in their free time, are they looking over and seeing you read books in your free time? It’s important that they see you doing or what you would like them to do. And that you should, again, share with them. Like I spoke earlier, I tend to be a more of an extrovert. If I stay in and the pandemic has been hard on me, because I really miss my friends. And so socially, they knew that I was struggling socially. 

I have split kids, introverts and extroverts and some of them were loving this pandemic and doing really well online school because then they don’t have the anxiety of peer interactions as much and you know, their sleep habits and stuff. Two of my kids really did much better in the pandemic, but two did not so and neither did myself. So, it’s just important that they know that you are doing what you can to take care of yourself. And spiritually is a big one, too. If you’re so inclined to be spiritual.

Okay, we don’t really need to go over this. We’ll send out these sheets when we send out the recording. So you’ll have access to these sheets. This is also really kind of fun to take apart with your kids and kind of talk about it. Which self-care are you wanting to address? And this is just to make it a little easier and it’s not so lofty. So, right now I want to address my mental self-care, you know, whatever. And I’m going to set a goal. And, you know, over the pandemic, we might have all I don’t know about you, been watching too much TV. And sometimes I felt like my brain was turning to mush because Netflix lets you just binge and really that little alert sign when it says are you still watching should say get up and turn off the TV. But you know, I can watch Yes, I’m still watching. I’m in it, you know. So that’s not really addressing my self-care, because your head does not feel good after that long of a TV watching. 

So, a goal of mine might be specifically when that comes on, if I’ve dedicated a day to that, maybe stop, get up, read a book, go for a walk to do whatever I choose to do. And then what I’m changing. And then I added this, the help I need from others, because I’m sure we’ve all made a self-care plan before either, you know, addressing our weight or our mental health or exercise plan. And if we don’t ask for help, it’s hard to change a habit. So, making a self-care plan for your family is also a really good idea. If you all want to. If you’re on your kids about too much screen time, then you get off your screens and do it as a family. 

I think you could do this whole thing on screen time. And you know, if you’re putting in screen time limits on their phones, you know, let them know you’re going to put it on your phone and then you guys can talk about how it feels to not be able to check your phone all the time. Those kinds of things. And then this kind of brings us back to where we started with the challenges in the self-care and I just wanted everyone to take another look mentally at themselves, where they’re at, if they’re totally out of balance where they might need a little tweaking so that they can be empowered to be the best parents and the best role models that they can be. 

You know, the other thing I like, when addressing kind of resilience is I like people to come up with a family motto. It can be different for everybody. It can change, it doesn’t have to be the same one all the time. Something that you might have heard growing up. We all have these automatic thoughts. So, like putting in a family motto of a positive thought like my go to one is “you gotta laugh” because I’d always make a joke about something. But, you know, teamwork, whatever your family, you know, good. “I get knocked down. I get up again.” We’ve used that one a couple times with the song. So, just setting one. It can be fun. It can be a way to talk to your kids without it being too deep, I guess you would say.