How to Answer Questions related to your child’s disability.

Transcript

Marsh Naidoo (00:25):

Hi guys. Welcome to the Raising Kellan Podcast. For those of you listening in for the first time, my name is Marsh Naidoo. I blog at raisingkellan.org where we curate resources for special needs parenting. In today's episode, I will be chatting with Rose Reef, a licensed clinical mental health counselor from Carrie North Carolina, whose niche practice focuses on supporting individuals with disabilities and their families. Today's episode is brought to you by our community sponsor, First Citizens National Bank

Marsh Naidoo (01:16):

Rose Reif. Welcome to today's episode of Raising Kellan(#42). It is so good to have you back.

Rose Reif (01:23):

It is such a joy to be here. Thank you so much

Marsh Naidoo (01:27):

Guys, Rose joined us last year on episode 17 of the Raising Kellan Podcast where she talked about some quarantine mental health strategies. So I encourage you to go back to listen to that episode. It is filled with little nuggets of information, which was invaluable as we negotiated Covid-19 last year. And Rose, I don't think either of us, for that matter will have thought how long this period would've lasted for.

Rose Reif (02:01):

Not at all. My son likes to joke it's we just passed the one year anniversary of our two week quarantine.

Marsh Naidoo (02:09):

Absolutely. Well that's a bright young man and I think he absolutely nailed it with that explanation. We are one year in two Covid-19 and I mean it's kind of surreal at this point, isn't it?

Rose Reif (02:24):

It is. But so many of the parents that I work with in my counseling practice are so familiar with things not going, how they planned with unexpected crises coming up and then just becoming a new normal. So I said at the beginning of the podcast, I actually wrote a not podcast at the beginning of the pandemic and I wrote a blog post that I really felt, and I still do feel that a lot of parents raising disabled kids were better equipped than a lot of people to cope because this is pretty normal, right? Oh yes. There's something scary and unknown and we have to isolate and do things differently and we have to have new equipment and rules to be familiar with. This is all familiar stuff to a lot of your listeners. So hopefully they've been able to use those skills and manage to get through and are now appreciating what feels like the light at the end of the tunnel as more and more people get vaccinated and we're able to finally regain some control.

Marsh Naidoo (03:33):

Rose part of the conversation we had earlier last year was focused on anxiety and depression which I appreciate as a parent and for myself. And that was a topic I was wanting to explore more with you during today's podcast, if that would be okay.

Rose Reif (03:55):

Absolutely.

Marsh Naidoo (03:56):

Just to start off on a general note, depression is actually defined as a medical illness that affects how you act and affects your feelings. And anxiety is more, would you say more an autonomic response to a stimulus. There's an intense excessive worry. Would that be a fair definition?

Rose Reif (04:20):

Our current understanding of anxiety and depression, and this is so hard to say to somebody who's suffering because of either or because of both, but they really are our brains attempt to be adaptive. Our it's rooted in our autonomic nervous system and specifically our sympathetic nervous system saying that in the case of depression, this is too much. We are feeling too much. We need to isolate, we need to pull back, we need to do less because I'm just feeling too intensely. And in the case of anxiety, it's that same symptom sort of being triggered by things and feeling something bad might happen. Something scary is out there. We need to be aware, we need to be constantly more vigilant. And again, that's so hard to say to somebody who feels terribly because of either of those conditions, but I think it's an important starting point.

(05:24):

If you're experiencing anxiety or you're experiencing depression to say you are not the problem, you don't want to feel the way that you do, you recognize how it's, it's not helping you, but it's at the same time important to know that it is your body and your brain trying to keep you safe, trying to protect you from risks and from overwhelm. And when you see it that way, it's a lot easier to say, Okay, I can recognize what this is. I can know that the reason that I'm irritable and the reason that I'm so tired or the reason that I can't sleep that any of these things going on have a purpose. And now that I understand that, now I get to choose what I'm gonna do about it.

Marsh Naidoo (06:11):

Would you say it's a fair assessment, Rose? If we acknowledge those symptoms, we are better able to move forward?

Rose Reif (06:22):

100%. You have to start where you're at. And the first place to do that is by naming it. And so many parents who I see in my practice, they've just tried to push through and there are different terms they'll use to describe the same thing, which is I just a little bit further and then things will feel better. I'm just gonna do a little bit more. I'm just gonna take on a little bit more, push a little bit harder without ever stopping to say, Is it possible that I could feel better? That these things don't have to feel so difficult? And once they do that and they say, Yes, I'm in a stressful situation. Yes, my child has high needs, my friends have no idea what I'm talking about when I use terms IEPs and VIPs and AFOs and everything else. But when I acknowledge that there's something going on inside of me that's making me feel worse, whether that's anxiety or depression or again, both cuz they do tend to hang out together it becomes a lot easier to work through it and to say, I'm not a bad person because I was irritable and frustrated with my child or my partner or my coworker this morning.

(07:41):

It's not wrong that I felt that way. Maybe I could have handled the feeling differently. But that irritability stems from depression, my feelings of anger, my feeling that I can't hold it together and get through a day without yelling at my child. There's the reason that I'm feeling that way. And the more that we acknowledge it, the easier it is to talk about it, to seek out treatment to find support from others and to not shame ourselves for feeling a way that is so knowable to so many people. There's a reason we have names for these things and we have the DSM and we have support groups and people know what you're talking about. If you say I'm feeling depressed, not uncommon. It's unfortunately quite common. And so the sooner you can name it, the sooner you can tame it.

Marsh Naidoo (08:34):

I love that. As soon as you can name it, you can start taming it. <affirmative> guys, I have to give you a little bit of a backstory here. Me and Rose actually sat down last week to take this episode <laugh>, and we had such a awesome conversation and I'd forgotten to hit the record button. And so I'm trying to think of some of the questions we had actually gone through on that previous episode. And one of it Rose, I believe, was how do you know as a parent when it's time to ask for help? And Rose had a priceless on such of that. So I'm gonna hand it to Rose

Rose Reif (09:17):

<laugh>. Oh no, here's hoping I can replicate that. But I believe what I would've said is what I usually say when parents ask that, which is if you're asking the question, you're probably already there.

Marsh Naidoo (09:31):

That's it. Some of the other questions I'd wanted to ask about Rose is from both perspectives that as a parent and then that off as a child <affirmative> in terms of being a parent when we first receive that diagnosis and there is that complete overwhelm and so many unanswered questions as perhaps need to feelings of both anxiety that may develop into depression, What is something that you would offer to a parent that has received a diagnosis of developmental delay and or disability?

Rose Reif (10:14):

Sure. We live in this era of self-advocacy and increased awareness and acceptance of disability, which has been such a fabulous thing to watch this culture grow in the 20 years that I've been in the field. But with that I think unfortunately has come a lot of shaming directed at parents who are honest about how they felt, specifically at the point that you're talking about when they either received a diagnosis or finally got the report that made things click for them, most parents will describe some sort of oh moment of realizing just how different life is going to look from how they envisioned it with their child. And a lot of people will say, Well, you shouldn't feel that way. You should love the child you, you should appreciate any child that's in your life that you get to be lucky enough to parent. And yes, all of that is true, but the fact is many many parents feel the way that you just described.

(11:22):

They feel shocked, they feel guilt they feel some anger, they feel maybe a little bit of denial. There's a wide range of emotions disbelief, sadness, worry, all of it. So what does that mean? Does that mean that only people are having disabled children? No, of course not. There's something understandable and very explainable in that reaction. And what we know from a lot of research, what I certainly see in my practice is that is rooted in attachment theory. That when we find out a child is coming to our lives, either through adoption or pregnancy, however we're growing our family we start to envision what our life will be like with that child. And we see coaching little league games and we see taking pictures as kids go off to prom and we envision weddings and we do all this imagining and it serves a purpose biologically.

(12:26):

There's a reason that we spend so much time thinking about who our child will become in later life and it is to help us get through the very difficult period of adjusting to life with a newborn. Cuz you have this screaming little thing that can't tell you what it wants and it won't let you sleep and whatever you try doesn't seem to work and you just feel so deflated and uncapable. And so our attachment theory tells us that we have these really rich fantasies about the child we're going to have so that we can stay bonded to and attached to and care for a newborn who is a lot easier, I mean a lot more difficult to raise and cope with when you're sleep deprived and possibly still in pain from labor and all that. So when you find out actually your child will not be playing baseball unless it's through Miracle League with the aid of a wheelchair or your child may not have pictures taken of them going off to prom or getting married because they have very severe intellectual disabilities and those kind of relationships may be out of reach for them.

(13:37):

That's devastating to that I idea the attachment that you have built to the child that you envisioned. And so what has to happen neurologically for parents is they have to kind of rework, okay, what about that situation might still be possible? What will look different? How can I get to know and appreciate this child who is different from the one that I envisioned? There's grief that goes with that. Anytime we lose something, we have to grieve that loss. It may not take long, but it's there. So anybody who tells you that you're wrong to feel grief or guilt or worry or shame or any of those very uncomfortable feelings when you find out that your child has a disability unfortunately they're quite simply wrong. I get that they're coming from a well-meaning place, but that's not what science tells us happens for parents. So I want parents who feel that way to know that it is okay to feel that way and that rather than try to mute their grief and pretend that it's not there, I wanna encourage them to again name it, to tame it, right? Explore your grief, do grab a book from the library and do some grief expression exercises, meet with a therapist, go to a support group really work through all of the things that you thought might be that you now see won't be, or at least won't be the way you expected them to be. Because it is only by going through that process that you can really start to form a strong secure attachment to the child that you do have.

Marsh Naidoo (15:17):

And I think that the big thing initially Rose is that you are right. We are living at a time where actually it is the right time for our kids that you have a disability because there's just a whole lot more media representation, there's a whole wealth of information out there on how we can navigate this different journey. As far as what parents can do for their kids in terms of self-esteem. How do I as a parent, work with my child to foster their self-esteem? What would you recommend as far as that is concerned?

Rose Reif (16:06):

Oh, that's a great question. So for a lot of parents there has to be an awareness that yes, I could probably do it better, faster, easier, less messily myself, but that doing that is not in my child's best interest. So allowing your child the dignity of risk and failure, allowing them to take pride. I worked with one parent once who described that her child was trying to learn to make a peanut butter and jelly sandwich and because of some mobility and flex issues in his hands, he kept slicing through the bread. And so she said it was like the bread would have 15 holes in it by the time he was done making the sandwich. But he was so proud of himself that he had done it for himself. And she talked about I'd have to sit on my hands. And it was so hard not to just jump in and do it for him cuz I could make a much prettier sandwich.

(17:14):

But for her to have that self-awareness that, look I, I'm wanting to give him something which is a sandwich that looks nice, but what he really needs right now is the pride that he will get for making a sandwich that is his own. And those are two different things and I'm an excellent mother for choosing to give him the one that is harder for me <laugh>. So I think that's step one is realizing that there's lots of things you can do for your kids and you can do it faster and you can do it better, but that isn't always better for them. And then two, I think really thinking about that the language we use very much informs our kids' inner voice and how that develops. And so you wanna be really careful when you're acknowledging your kids' accomplishments, when you're praising them for a job well done that you don't just say good job, that we're not the ones to assign value to what they have done.

(18:18):

That instead we give them the opportunity to be the one to talk about what they love about what they've done. Again, even if the outcome is not beautiful, even if it's not how we would've done it. So in the case of the sandwich just to use that as an example the mom would go back and say, It looks like you're really enjoying that. So she didn't say, it looks great, I think it's good. You did a nice job cleaning up after yourself. She didn't make any kind of evaluation of what it was. She just invited her son to talk about his creation. And so then he got to be the one to say, Yes, I made a really delicious sandwich. I am loving this lunch and I might make it again tomorrow. So he got to be the one to be positive about himself and that's what we want.

(19:05):

So I use this at home with my own kids all the time and it works both ways. I can walk by their bedroom and say, I see three books on the floor. I haven't told them, You need to clean up your room, your room's a mess. I haven't given them any direction, I haven't made any evaluation of what they're doing. I've literally just said what I see. Very observational, very. And then they get to be the ones to say, Ooh, books on the floor, that's not a sign of a clean room. I better go clean that up. They have to do the mental work there but I can also walk by their room and say, Wow, the floor is totally bare. No clothes, no books on the floor. Again, I haven't said that's great or I appreciate that. Just said what I see. And they get to be the ones to be like, Yeah, I clean my room, it does look good. So thinking in that way, just being observational, kind of avoiding what we think of as traditional praise really does help our kids to build their own internal sense of praise and pride.

Marsh Naidoo (20:10):

Do you think there's a fine line as to how much of help to give so that your child is not struggling versus letting your child develop a skill? Do you think there's a line in there

Rose Reif (20:26):

Is and what's so hard is that the line is very frequently changing. We all know that a kid who didn't get a great night's sleep is maybe not gonna be at their best first thing the next morning. So even if they typically wake up and to take a shower and eat breakfast and brush their teeth if they've been sick or if they're tired or if they had a really emotionally draining day the day before or if there's something big coming up that they're anticipating, they may not be there. Those skills may have diminished a little bit. And so we need to be really mindful as parents to be kind of evaluating what are the times and the signs to look for that. Let us know, hey, my child's doing really well right now. This might be a good time to introduce a new expectation, teach a new skill let them try doing something for themselves.

(21:15):

Versus the days where it's just not in a great place right now, I'm gonna be a little more present and available. I'm gonna say, Hey, I know you usually do this for yourself, but I see that you're having a hard day. I would be happy to make your lunch for you today. Even though we've talked about it's important to make lunch for yourself, I'm gonna help you out. And I think certainly parents a lot more times, paid caregivers, which is another group that I work with folks who are working either in group homes or other care settings get a little guilty of having the same expectations day in, day out. But think about the other people in our lives. We give them a lot of grace and flexibility. My husband makes our bed most mornings, but this morning he woke up and he just had a rough night's sleep and he didn't do it. And I'm not gonna give 'em a hard time for that. I'm gonna say, Wow, he must have had a really rough night's sleep cuz this is something he normally does without even thinking about it. So giving our kids that same grace that even if it's a skill that they have, they're not going to lose that skill by taking a couple days off if they need a little more rest and restore time. So I hope that answers the question about how do you find that balance?

Marsh Naidoo (22:31):

Absolutely. So you basically see where your child is at that particular moment in time and use that gut feeding to know whether to help or not to help. In a world where so much of emphasis is placed on political correctness something that parents may often hit a wall up against is how to broach the subject off your child's disability and turns to use and how to explain that to family, caregivers or members of the community so that your child is understood. What would your advice be in that particular situation?

Rose Reif (23:20):

So this is a hard question to answer because some people really shy away from talking about their child's disability and would probably benefit from doing more of it and being, finding a little more acceptance and a little more comfort talking about their child's needs. Some people who are maybe overwhelmed by a new diagnosis especially will find themselves doing a little bit of oversharing. And I have clients who come in, I was crying to the teller at the bank who just asked how my day was and I wound up spilling about this horrible IEP meeting and I didn't want to do that. This is somebody I don't know well.

(24:07):

So I think in most situations one tool that's really helpful, I'll encourage parents to use a one to 10 scale and think about on a scale from one to 10, how much does this person need to know? And especially as you go into social settings where people may ask about your child thinking through, okay, how much does this person need to know that if I'm dropping my child off with a caregiver at the gym so I can go work out which you should do how much information does that person need about my child? Well they probably don't actually need to know that they have 16 P duplication syndrome. They probably just need to know that my child will make this one certain signal when they are fatigued and that's the sign that they need a break. So that's more, they just need to know the functional stuff versus how much does my child's teacher need to know?

(25:02):

Well they probably need to know just about everything that you know cuz you want the support to be continuous and for your child to get the same care. How much does a parent who lives in the same town versus a parent who lives in a different state need to know that can be different. Even I'm talking about grandparents here, like parents to parents. So really thinking through what do they need to know? How much does it benefit me to talk through that? And then this is probably more than we have time for today, but then of course there's what about the person who says something unkind at the playground? How much do they get to know? What about the person who feels like because my child has a visible disability that they have every right to come up and ask very personal questions that they would never dream of asking anyone else? How much do I tell that person? So thinking through some of those situations and making sure that you find a level that you're comfortable with and that you don't find yourself either sharing too much so that you feel uncomfortable or sharing not enough so that your child doesn't get the care that they need in certain settings.

Marsh Naidoo (26:09):

I really think that's a question right there, how to handle that uncomfortable moment where someone just blatantly ask you. And it's obviously not coming from a place of kindness.

Rose Reif (26:21):

So I actually, I have a whole blog post that I did about this that if parents are really struggling with this, they certainly welcome them to check that out. I think it's called When People Say Mean Things about Your Child <laugh>. So it's pretty clear what it's about but I definitely encourage parents, don't make it your goal to inform that person to change that person's mind because that's setting yourself a goal that you will likely fail at, unfortunately yes. But instead to have it as your goal to model for your child how they can either advocate for themselves in the future or just what advocacy can look like. Cuz that's something that you can do correctly every time. And I have worked with parents who have had so many different great responses. Some people will type up a little explanation of their child's disability and give people a website to visit if they're curious to learn more. And they'll just hand that to people and say, I'm here playing with my child at the playground, or I'm here to do my grocery shopping, but here's where you can get more information.

(27:33):

Some people I worked with one mom who would just very beautifully say, Oh, that was extremely rude do you wanna start over? <laugh>? And it was great just smiling. Even like you said, a lot of times when people are approaching out of a place of unkindness smiling, just sort show them they're the ones who are missing out on something. Absolutely. Yeah, I think there's lots of different ways you can handle it. And there's also a bit of regionality with this in different parts of the country. I think there are different questions you're likely to get different. I live in North Carolina, I'm in the south, so I have a lot of parents who say, I'm so tired of strangers coming up to me telling me that they're gonna be praying for my child because they're not doing that to other kids. They're singling my kid out. And even though it's coming from a place of kindness, actually it feels just like in a front, it's not authentic. Yes, it's, it wasn't welcomed. And so getting familiar with what people are likely to say and then coming up with a script response that you feel really comfortable with.

(28:47):

I worked with people whose kids have some really visible disabilities and unfortunately people will come up and say: What's wrong with him? Some parents will just, nothing, What's wrong with you <laugh>? And it just kind of starts to come out very naturally, very easily. And you just know that that's your response. So I think there's no quite right or wrong way. It's more about having the right frame of mind that if you say, I'm fearful to go in the world because I'm afraid that somebody might say something, that's just a recipe for isolation. Yes. And for not seeking out support and not introducing your child to all of the wonderful places that there are in the world. But if you instead say, this is something that will likely happen and so here's a way that I can respond that I feel good about. You're coming from a position of a lot more confidence and thoughtfulness and intentionality and hopefully then you don't feel as fearful to go to those places where people are more likely to say things,

Marsh Naidoo (29:47):

Gosh Rose, this is gold, girl. I think there's no better way that this is being put. And Rose, I wanna be mindful of your time and I know it's the time period that we agreed to talk for. I would encourage y'all to go to Rose's website, that's rose reef.com and I will attach that to the show notes as well. And definitely check out her blog site because it's so well written. And Rose, you instantly answer so many questions that parents have. And Rose, thank you for joining us today.

Rose Reif (30:29):

Thank you so much. It was delightful to talk to you. I'm always happy to come on and answer any questions that folks have. So thank you for hosting me.

Marsh Naidoo (30:38):

Oh, thank you Rose. You have a awesome day and guy and see you soon. Okay,

Rose Reif (30:44):

Same to you. Bye-bye.

Marsh Naidoo (30:45):

Bye Rose.

Marsh Naidoo (30:51):

All right guys, we have come to the end of another episode and thank you so much for listening. We have two awesome interviews lined up. One of them is with Jessica Moxham, who has recently authored the book The Cracks that Let the Light In. And the other is with Alex Lopiccolo, who is a COTA and that stands for a Certified Occupational Therapist assistant, Alex is known as the king of Swings and helps both parents and facilities, therapy facilities set up sensory gyms in the space that they have available. So two really interesting podcasts to look forward to. Guys, I wanna encourage you all to please rate and review this podcast. If you are listening on Apple, just scroll to the bottom of the podcast that you are listening to and you will see a rate and review section. Go ahead and give us some feedback. As always, we would appreciate a five outta five rating and just a quick little note enjoy the podcast or great information that just allows us to be found by others seeking the content we produce.

(32:23):

If there is a topic that you specifically would discussed or more information on, you can reach out to us at raisingkellan@gmail.com. We would love to hear from you. And we are also really active on our Facebook page. And if you search for Raising Kill and Inc, you will find that Facebook page where you can drop us a line. I'm really grateful to our community sponsor, First Citizens National Bank for believing in the work that we produce and put out. So thank you so much, First Citizens for sponsoring this episode. And guys, until we see all the next time, remember as always, gear to the top of your mountain. This is Marsh Naidoo signing off.