Rare Eye Conditions Teleconference – The Parent Balancing Challenge

Originally presented June 16, 2019 

by Sheila Adamo, LCSW, CADC

Learn how to manage the difficulties of raising a child with vision impairment and keep your life balanced.

Transcript

Sheila

I read this and it really struck me in my heart, it said, “making the decision to have a child is momentous, it is to decide forever to have your heart go walking around outside of your body.” I sometimes still think about that still. My child, my adult child now, has moved across the country and it still feels like half of my heart is there, or maybe a quarter, because I do have four children. I should have said that my oldest is the one with a visual impairment and albinism. I have three other children and their ages are 24 down to 15 now, and I live in the Chicagoland area.

I wanted to start with really briefly going over, as a parent, I think this is important for all parents to pay attention to, is to be a good parent, you need to know yourself. That means you need to honor who you are as a person before you had kids, during your parenting, and if you partner with somebody, you have to honor your partner and who you are together. So that’s a lot. If you think about a Venn diagram, that’s a lot of stuff going on that we have to work with.

I just kind of broke it down for ourselves to think about your personal story. Where did you come from, how were you parented? What beliefs got handed down to you? Maybe they’re not all front and center and you didn’t get faced with some biases or beliefs until you had a child that had a visual impairment. Then, what are your personal beliefs and values? These are things that are fully developed before we have children, so we have to honor those. Sometimes I think most parents, with any child, and then especially with children with special needs, would tell you as their child gets older, their values and beliefs adjust. As for me, I believe it goes deeper, and I have a stronger connection to other people and I’m more grateful.

So, it does evolve, but you take stock in yourself first before you can be that parent that you want to be – your past successes, your past challenges, and your views on discipline. That’s the other thing – I don’t think we talk about discipline enough with our partners or with our family. And then we try to just kind of jump into it when our cute little baby starts needing some discipline, you know, I think it’s really hard.

Education and background, we all have different triggers. Something that triggers me sometimes and I am very aware of it, but I can tell you, in the early years, I wasn’t as aware and I’d be like, “why am I so angry, what’s going on with me?” It’s getting to know your own triggers. Management of your own feelings before you can expect your kids to manage their feelings. Especially newly diagnosed, or even going through the stages of accepting and adapting to any kind of a diagnosis. We have to make sure we’re in a place that we can provide support and acceptance for our child and give ourselves space if it’s a bad day. Don’t engage in these long conversations if we don’t have the bandwidth to do that, at that moment. It’s okay to say, “hey, I care about what you’re what we’re talking about. But can we check back tomorrow? I’m really tired. I’m worn out.”

And then to take a look at your friendship and support systems- who do you have that supports you? Who do you have that fills your tank? Who do you have that you can vent to that helps you?

I’m going to try to go over this pretty quickly. In terms of how we’re going to manage the parenting balancing challenge, I think it helps to have a little understanding of how connected our thoughts are to our feelings and our behaviors. You change one, and you change the whole circle. We can come at it from different perspectives. In parenting, you’re gonna come at it from different perspectives. Sometimes you go at it and you change the behavior and therefore the feelings change, and you can get kind of creative soeven the example of if you are a slug in the morning, are your kids a slug? Or do you find that you stay in bed, are your kids are in bed? You can find as the day goes on, if they don’t do any activities, their thoughts are going to decrease and maybe go to a darker place if they tend to do that. But if you change the behavior, get them out of bed, go for a walk, do some things, you can find that your feelings and your thoughts come along with you and change a little bit.

I would be remiss if we didn’t talk a little bit about when we’re talking about the balancing challenge, dealing with parental emotions. Sometimes I feel like we don’t give ourselves as parents the space to deal with these, and jump right into focusing on our child. They are always watching us from when they’re young. That’s how they learn to adapt to their big feelings. The little kids have big feelings, and it’s really hard to manage sometimes, so they look to us, to see what we do. Therefore, if when I’m sad, I tend to shut down and not want to be around people, your child picks up on that, even unspoken. So, giving your feelings words and explaining them, I don’t think your child is ever too young to hear and get comfortable with emotion words. Therefore, you can say things like, “Mommy’s not feeling the best”, or “I’m a little sad, right now so I’m going to go on a walk to focus a little bit better.”

We’ve got to take sadness out as a bad word, it’s not a bad word, emotions aren’t bad. Everybody has all of these. Anger can be our friend. You know, anger motivates us, anger gets us going sometimes. Sometimes we can get into the phase of, because we’re looking at what charges our behavior, and oftentimes when we are angry, our behavior follows. What we, or our child, do when we’re angry, is not acceptable, so therefore, they get punished for the behavior, and the feeling might not ever be really addressed.

Anger is a really important one for these little kids and as they get older, by us allowing them to see us move through anger, appropriately. I think as parents a lot of times we shield our anger. Well, I used to think I shielded my anger a lot more than I think I did. But, I know when my children were little, I didn’t use that word enough, because it was changing my behaviors, and therefore my thoughts. Usually when I was angry, my thoughts would get very concrete and very negative towards myself. It was usually all about, “Oh, I can’t, I’m not a good mom, I can’t handle this.” “Why did they keep bothering me?” All of these thoughts, and that fed my anger. Then depending on a given day, my behavior would follow along with that.

So, addressing your feelings – I’m feeling angry. A lot of times we feel angry, and it has nothing to do with our children, and sometimes it does have something to do with them. But, just saying, “I’m a little angry right now. I’m gonna take some deep breaths,” and let them see you take your deep breath, let them see you calm yourself down. Point it out and say, “oh, I feel a little bit better now.” Some people like to run, or bike or some people cook when they’re angry. Whatever you do, start explaining to your kids your coping skills too and letting them see a little bit. That’s not letting them feel responsibility for it at all. That’s letting them see it and not be so afraid of it. I hope that makes sense to people.  

Fear – I know everyone on this call all of our children have a visual impairment, and with that can come a lot of fear. As parents, we need to make sure we are dealing with that ourselves. If fear causes anxiety, and we’re very aware of that line of where my fear and anxiety end and my child begins. Because I really don’t want my fear to impact my child in any way. If I’m really afraid of my child crossing the street because they can’t see very well, then I need to deal with that. I need to talk to the orientation and mobility counselor, and I need to do what I feel calms me, so that I can be the steady source when my child is learning that skill.

Because as you guys can probably imagine, if I am still full of anxiety when we’re learning that skill, my son or daughter is going to pick up on that. They can take on the anxiety and they can feel that maybe you don’t think they’re ready yet. There’s lots of ways they can misread your own anxiety. So it is really important that we take the time to deal with all of these emotions so that we can be there for our kids.

I would be remiss if I didn’t mention happiness. I think it’s really important to celebrate our kids, celebrate ourselves, celebrate when you had the perfect intervention, and everything went right. It’s very rare in a day of managing your family, well, in my family it was very rare that everything kind of fell into place in the right way. At the end of the day, it’s very nice to celebrate those happy moments and let your kids in on that, too.

When we’re talking about the automatic thoughts, I just kind of wanted to really quickly go over that if you’re not aware of your thoughts, or even if you are and, you don’t know what to do with them. These are thoughts, they are nothing to be afraid of, but everybody has them. For lots of people, it’s really normal to think you’re avoiding listening to them, but in reality, you kind of glob on to a couple of negative ones, and that can make you feel heavy and loaded down throughout your day. So, sometimes it’s helpful to keep a thought journal. Sometimes when you do a thought journal, if I noticed that I, as a parent, something that comes up as like, “I don’t know what I’m doing,” “I can’t do this,” “I need to read another book,” that was a big one for me, I always felt like the next book was going to be the parenting book, that opened my house up into really well-behaved kids. When I was writing down my thoughts, then I could look at that and say, “is that true?” You know, I am good enough. For the most part, everybody struggles and going through and picking apart your thoughts and taking some of the power out of them. Because if we keep them to ourselves and don’t share them, or don’t acknowledge and let them move on, sometimes they can grow.

I know sometimes it’s just really powerful to know that maybe the mom next door that you think is doing everything right, often has the same thoughts as you. That they don’t feel good enough either, and they don’t feel like they know what they’re doing either. Sometimes just being vulnerable enough that you open up will really help other people, too, and yourself. There are lots of thinking errors that we don’t have time for tonight. But you know, whatever you’re doing in your voice, if you hear the all or none, like “I’m always this,” or I’m never able to handle this,” that’s a clear identifier that you need to slow down and untwist that, because in reality, nobody’s all or never. We’re all somewhere in the middle. But when you say something like, “I’m never good enough,” well, that’s definitely not true. So that’s a good indicator, like, “wait, my thinking is off.” I use that, too, when I have been angry with my children. Those “all or never” come out very quickly, and that’s a really good snap. Like, oh, I need to stop. If you say, “you never make your bed.” Well, sometimes they probably do. It’s just a good indicator to slow down and breathe.

Then what really helps in getting a handle on your thoughts is the “mindfulness approach.” That is slowing down, acknowledging your thought and letting it go. If you get really good at it, you can slow down, and not have a whole lot of thoughts come in. That’s really hard. I haven’t gotten there yet. So if you have, congratulations. There’s one app that I love that’s very simple. There’s a free version for mindfulness. It’s 10% Happier, by Dan Harris. I’ve had many different apps on my phone and that one I tend to go back to. The idea is, if you even try to meditate three minutes a day, or one minute a day, you can make yourself 10% happier. That’s why it’s called that. So if you want to check that out, feel free. 

The next one is the behaviors. Pay attention to when you think about something, or when you’re feeling angry, what is your body doing? How is your body feeling?  Everything I’m talking about is the same that we can look at for our child or children, no matter what age they’re at. Sometimes, you can identify yourself or other people as angry before you actually cognitively even know it. My heart skips a little beat when I’m anxious. It’s taken me a long time, but sometimes I’m like, “Oh, I must be really holding in something or really scared about something.” And then how do I behave? If I clean the house and I’m cleaning a corner in the kitchen, usually I’m kind of procrastinating, which is a behavior, which usually means that I’m anxious about something that’s happened. I’ve learned that about myself so that I can see, and sometimes I don’t really realize I’m doing it until I’m knee deep into a project. Then I realize, “oh, yeah, that’s because I have this assignment or this thing at work due” and I’m anxious about it. I think you can see your kids do the same thing if they’re old enough, if you can point that out to them.

I know we’re all struggling with so many challenges that I just put some up here. We all have our own unique challenges. It’s not as parents, it’s not one person’s challenge is bigger than the other, it’s just we all are struggling and challenged in different ways. I know you got this in the email, too. I wanted to provide some tools for you. And these can be used with yourself, with your partner, with your child, depending on their age. I used to just do this, and have the next kind of page or just define your challenge. But I like the two pages and I’ll explain why as we’re going through it.

The first one is- I don’t think we take enough time, and model taking enough time as parents to actually define what we’re struggling with. Sometimes it just feels all lumped in because our days can get so overwhelming, that it’s hard to pick out one challenge. If you don’t pick out something it’s really hard to solve 10 challenges at once. So, we need to break it down into steps that don’t seem so overwhelming.

I’ll take an instance when my son was younger. I really used to worry a lot, and I still actually do worry about him socially. He can’t read visual cues, and he struggles, especially as a young boy, with peers – and when to join a group, when to talk, and when not to talk. All of those things. As a fully-sighted parent, I could see him struggling. I could feel some really intense emotion inside my body as he’s struggling, even from across the playground, that he might not even know I’m there. He can’t see me.

So, in terms of defining the challenges it’s a weighted challenge for me. It’s not as simple as, I need to run over there and get him a playmate. That’s not a simple solution. So first, I need to define it. For me, as a parent, not for your child. and you can do this with your child, if he feels challenged by social then this would be different, I will be talking to him. But before I can talk to him, I need to sort through my own emotions, because this is a heavy emotion for me. I have lots of different feelings about it.

So, the struggle is social interactions, and my son. So, I feel sadness. I’m sad that he has to struggle like this. I’m sad that sometimes his peers are mean, or even if they’re not mean, they’re not including him, or they’re excluding him. I’m sad that everyone doesn’t see what a wonderful boy he is like I do. Fear can drive this part of it for me too. I’m afraid that he’s uncomfortable. I’m afraid he’s going to get hurt. I’m afraid he’s never gonna fit in, and all kinds of things. A lot of this does, obviously, as I’m saying it out loud, stem from my childhood.

So, we all grew up differently. That’s where the first part of this slide comes in. If I struggled in junior high, I might be really dreading junior high for my kids. So, I need to pay attention to that, because I might be hyper alert and my feelings on junior high, I’m gonna go in a little extra charged.  I’ll be a little extra. So I’m mostly sad, fear, and then angry. I can get angry at other kids pretty quickly, and not know what to do with that. So this is all my emotions on the playground, while I’m trying to chat with some other people, this all could be going on internally with me. My thoughts can range from, “I haven’t provided him the tools.” “I can’t do this.” This is too hard.” From what I said before, “is he ever gonna find his own friends,” all of these kinds of thoughts.

Usually, my thoughts in that moment aren’t like, “things are a great.” Then I’ve had a lot of different behaviors in this moment. I have ranged from overdoing it and running over and trying to play with them in, maybe in an intrusive type of way, take it on and try to make everything really cool and copacetic, so that everyone’s happy. Or, I might have people over to my house and try to make the perfect playdate for all the friends so they love my cool house. Or, I might pull away, or I might be angry at a parent that wasn’t even there, because their son behaved a certain way. There’s lots of different behaviors. And again, this is all me.

So, then my statement of challenge would be, “I am scared, and angry and sad, when I see my son struggle socially.” “I don’t have pleasant thoughts, and I feel like he might never fit in. And when I feel and think like that, I’m either aggressive with my behavior and insert myself, or I withdraw.” So that would be my challenge. In that story, you have no idea what’s going on with my son, right? This is just all in my body. 

I’ll go to the next slide, but just as an example, I could have that all going on internally, and my son could be perfectly happy swinging on the swing by himself. Or, that could be a scenario that he is satisfied and happy and not feeling isolated, and I’m taking all that on myself. When I have that statement of challenge like I gave, then you have to say, “what can I do?” With that challenge, one, I can ask for help. I can talk to somebody. I probably need to have a sounding board to check myself. And depending on how old my son is, I really need to see how he feels about this, when I am not elevated. So, not at the moment that I’m having all these negative thoughts.

So, the first thing I can do is ground myself, and take some deep breaths, and give some positive thoughts. If I can’t do that for myself, call in some reinforcements that will do it for me, with me. So, that’s when you say what do you need from others? What friends do you have, what support groups are you in? You guys are all doing great. You came here. That is expanding your knowledge and getting your connections with other people with similar issues. It doesn’t need to have people with similar issues. It could be family, and it could be some friends that understand or will just be a sounding board.

When I’m going through this with my kids, it’s going to be very different. What can my son do if he is feeling left out? Well, there’s lots of things he can do. And I can help him, but he needs to, depending on his age, talk about it. I tend to be overzealous, I guess you would say, so I see someone struggling and I want to fix it, right? I’m gonna go in and fix it right away, especially my own kid. Well, what I realized, because they have told me now, because now they’re older,  “stop doing that.” “I need to fix it myself.”  So, what I learned is, “what can I do?” I need to ask permission before I step in to assist my kid and I think this is a wonderful tool for you parents with little kids, it is a wonderful tool to get used to saying out loud, so that it becomes second nature, “hey, I can help you? Do you want my help?” Then when you brainstorm what your help would look like, before you do it, just say, “Do you want me to do this?” And what that does is it’s empowering your child that they made this choice. Yes, he might be too young to do what you’re going to do, but it’s still his choice. That can start at a really young age, especially our kids with visual impairment.

Oftentimes, we just want to run in and fix things, and make the environment safe, of course, but we don’t want our kids struggling. I would always be two steps ahead of my son making things as perfect as they could be. And what I didn’t do is trust the process that he has the skills, and stop and let him have the skills so that he could do it himself, and I can celebrate his success. I hope that makes sense for people.

What I need from others is what we were talking about, like back when you call in the school, you can call the O&M. And yes, this is for your kid. But I made plenty of those calls, and it was actually for me, so that I understood the process of O&M – how if you don’t have a visual impairment in your family before you had your child, we don’t know a lot. So to get that help, there are people to help us. So I got very comfortable reaching out to my son’s helpers and asking them for myself, “this is happening, what should I do?” And they were helping my son and me at the same time. 

How do you find others? You can start with your own support group. You can talk to other parents and see what they do. You can, like I just said, talk to the professionals, come to groups like this. The Lighthouse Guild has lots of different support groups. Not all of it’s going to resonate with you. So just make your own action plan and say, “Okay, well, I will not do this, but I will talk to the vision itinerantand get a plan to address this issue.”

If we go back to the socialization issue with me on this chart – “what can I do” My process is, I know myself enough to know that I would need to talk it out with somebody. So I would talk it out with an appropriate person. I would ask for help with others. I would brainstorm an action plan, maybe with the school, if this was happening in school. If my son had said he wanted more social skills, or more social interaction, I would maybe involve a social worker, and I would ask if they could help, and maybe they can have some social time at school with other peers. I might involve some other friends with kids the same age. I might ask a friend, “can you come over and bring your son or daughter, so we can play together?” Those kinds of things, that action plan. But in that action plan, I’m always going to leave a little caveat for me to deal with my own emotions. I say this a lot, if we skip over our own emotions, it’s hard to tell where we stop and our child begins. And our spouse or partner. 

This is just another sheet that I provided you all with to look at things like all of our challenges. Then on the other side Self Care. If we look at last of us, it’s really a lopsided thing and we’re going to define what self-care is in a couple of minutes. So I’m not telling you that you need to go get a mani pedi. I’m not telling you that, because if you like to get a mani pedi, that’s great, but sometimes that can feel like insulting if you’re going through a lot of things with your kids and you feel like you’re drowning, and then you have a friend that says, “you need some me time, go get a mani pedi.” It can feel a little like people aren’t understanding where you’re at in the moment. So, we want you to define your own self care.

Just every now and then look at this, and make sure you’re trying to at least balance it. Same with your kids as they get older, it’s helpful to have this visualization for the. Are they keeping their challenges, and their schoolwork, and all of their stuff, and self care, in check? So, when we talk about self care, it’s the practice of taking an active role in protecting one’s own well being and happiness, in particular, during periods of stress. So, that does mean different things to everybody. And you have to allow yourself to figure out what that is.

So, we have all different kinds of self care. We have emotional, physical, spiritual, mental, practical and social. So, just to kind of break it down. I am not giving you any activity that should bring you stress and make you feel more stressful, but maybe just picking one of these. Saying, if I looked at it differently, instead of kind of like my challenges, and break it down and say, If I just look at my emotional self-care, what am I doing, or what can I do today to take care of myself that might recharge my emotional battery. Sometimes it’s taking a nap. And sometimes it’s the exact opposite of taking a nap, it’s exercise. Sometimes it’s talking to a friend, getting coffee, going out for a drink, there can be lots of things, different things for different people.

Mental self-care. I’m not sure if any of you parents have felt when you’re dealing with multiple children, or even just one child, and maybe like the toddler years I’m thinking, and your life seems like it has become surrounded around the toilet, and eating, and vomit. If your child was sick, mentally, we can feel so depleted, and that we’re not as human beings, feeling that mental capacity, we all need to be active mentally. So, what can you do in the little time that you have? This is again going to be different for everybody. Can you go to a workshop? Can you read a book? Can you sit in silence – it’s different for everybody.

Socially, the same kind of obvious, some people need to disengage from being social, other people need to engage in social. You know, yourself. 

Spiritual, depending on your belief, are you making time to support them? And then just practical – your house, what is happening in your house? Is it that everyone has their different levels of cleanliness? Are you feeling like you’re getting the support you need to live in that zone that you feel comfortable with, whatever that may be. So, that’s how they all kind of play together. Instead of just saying, I’m going to do this. Look, and see and be more empowering to yourself and say, “you know, I’m going to support myself mentally today, and I’m going to read one chapter of a book.” And you’ll be surprised how good that can actually feel.

And also, this is a self-care plan. It’s a lot like the other plans, I again, wanted to give you a hands-on tool. Some people love them, some people don’t. If you’re a planner, and you like to write things down, feel free. If you’re not, just do this for yourself anyway that it feels good. So again, it’s self care that’s being addressed. Then what are your goals? You have to set a goal so that you can celebrate success. What changes are necessary to reach this goal? And then what help do you need from others? Then you can kind of come back to this and make sure you’re doing those changes necessary and evaluating it.

One step that I think that we also avoid with our children is letting them see our self-care and defining it as self-care. One thing my husband and I did with all of our kids is keep to our relationship strong. We would get a babysitter when we could, and the kids would be like, “don’t go, don’t leave me,” and we would say, this is what Mommy and Daddy need to stay healthy, we need time alone. We need time apart, we often, because it was easier without a sitter, one of us would go out by ourselves, and the other one would stay home. So, you know, me going to a movie, I would say, “mommy needs to go, this is something I need to do.” And then I got into exercise, and I would use the word self-care. And when I missed that exercise, the kids could see that I wasn’t happy, and would start to notice my own self-care.

We’re almost done, and then we’ll have time for questions. When we have had the self-care plan, and when we look at the scale of parenting balancing challenge, I do not feel like it would be a complete picture of the stresses that we have as a family if we didn’t talk a little bit about communicating your needs, your wants, and a plan to other people who love you. Sometimes, we can develop it all and then we’re like an island, and we try to do it all ourselves, and we’re not communicating. One, it’s okay if you want to do it yourself. It still is very empowering to vocalize what you’re doing to other people.

So I might say, I have this plan on self-care, like an exercise plan or something. No one can really help me except for making sure I can get there with things like childcare and stuff. But I’m going to tell people what I’m doing, and ask for help. Let the kids see you ask for help, and hear you and let them help.

I used to sign up for this class on Tuesday nights, and I had to get a sitter every Tuesday night. And the kids would know that I was doing this and I talked openly about “this makes me happy.” It was an exercise type of thing, and they knew that it was important to me. So then, they would help with dinner, or they would help with cleanup. It kind of became a family activity. The same with my daughter- it was really important that she make it to acting or singing or something. It’s important to support each other’s passions, and something that makes them feel good.

So, when you’re communicating with family members, if it’s important to you, or another family member, that’s important enough to create a safe space to talk about it. Sometimes, we are so busy, we try to do things on the fly. And we just kind of list over the things that would need to go on in that day. All things aren’t equally important. So, creating that safe space to talk about what everybody needs to reach their goal. So, maybe calling a family meeting or some people talk about this at dinner. Whatever way that feels good in your family.

The younger the kids, actually really doesn’t matter what age, keeping your kid sitting down and making it a big deal and saying, you know, let’s talk about our feelings usually doesn’t go over well with many kids. But it can be like doing a puzzle. And then you can open up and really talk about things. It’s helpful for kids to have their hands active, so that they don’t feel so intimidated and they’re able to let their guard down a little bit. Keeping people active, like doing Legos or something, while you’re talking, sometimes that can give you the biggest insight into what’s going on with your children.

Have a plan and a script if needed. If you’re talking about something difficult with your children, plan ahead and talk with your spouse or partner, or anybody that’s important that’s going to be in the meeting, ahead of time to set yourself up for success. Limit the topics. Sometimes we let the conversation stray really far and kids are really good at derailing the conversation so try and stay focused. Sometimes that helps if you have something in front of you.  This is what we’re talking about. We can talk about what you’re saying, let’s put that on the list for the next time.

I wanted to give a little refresher about communication. Sometimes we make it so much harder than it needs to be. Listen, reflect. Sometimes, that’s all we need, especially with our kids. Sometimes we can’t solve it, or there’s nothing to really solve. We just need to say, “I hear that you had a really stressful day at school today.” That’s acknowledging their day. The other thing with communication is it’s really important that you don’t hear a fact from them like “the teacher called on me today,” and your son seems really unhappy or something, and you say, “oh, that sounds really stressful. I’m really sorry.” Whatever you’re saying, it’s important to ask them before you say, “oh, that was wrong. I’m really angry about that.” If someone called them a name, or even the teacher calling on them, it’s important before you say anything, say, “Well, how did that feel? Or, “what did that feel like?” Or, “what did you feel when they did that?” Because what we might feel angry about, they might feel proud of, we don’t know. And if we take on the anger, if we say, “oh my god, that’s so wrong, that makes me so angry.” You’ve kind of effectively told them that they need to be angry about something that they might not have felt anger about.

So, before you share how you feel hearing a story, even if it angers you to your core, you should probably check with them when they’re old enough. “What did that feel like for you?” And make sure that that’s again that line of me dealing with my anger and them dealing with theirs. A good example I can think of, since my son has albinism, a lot of people call kids with albinism, albinos. I don’t love that term. I have done a lot of work on myself to be accepting of that term. I do tend to correct people. When I’m by myself like, “no, he has albinism.” But my son, who’s 24, is okay with a term and he actually calls himself an albino in many situations.

All along, we kind of knew in the albinism community that this happens. So when kids called him an albino, even though like, it’s still kind of makes my skin crawl a little bit. I need to check with him before I even respond and say, Oh, what did you do? Or how did that make you feel? Or was that okay with you? Before I’m like, “Oh, that was that was so rude.” Because that was my bias. I hope that makes sense.

When you’re doing that communication, make sure you’re letting them have their own space. If you made an appointment or a meeting, make sure you follow up with whatever you guys planned, even if it’s just as little as cleaning your room, or something like that. Follow up and give that time and space to your family. So that is all I have. 

I think we can open up the group and see if we have any questions or comments or anything that has resonated with people. We can stop the recording. If anyone needs to reach out, they can reach out to me, or they can reach out to Maggie with questions.