Dr. Walsh
Wed, Jan 18, 2023 10:25AM 1:03:40 SUMMARY KEYWORDS parents, child, understand, kids, school, important, adhd, families, setting, system, impact, iep, medical, people, happening, diagnostics, student, feel, educational, educate
Welcome. I am so excited to have you Dr. Walsh on the show. And before we hit before we actually hit record on this episode, I did say to Dr. Walsh, it's been a long time coming. So Dr. Washington, I have been in touch for a bit, several years. We can't exactly remember to have this important discussion today. But before we dive into that, I'm going to have Dr. Walsh introduce herself. So you, our listeners know what goodness is about to come?
01:38 Well, thanks, Wendy. Yes, we've known each other for some time. And it's a blessing for me. And well, I'm sure we'll talk about a lot of those things today. And what you know, thesepatients and families are to me in terms of value, and what makes my job amazing every day.So my job, I'll tell you a little bit about what I do. So I'm a pediatric neuropsychologist at Children's National Hospital in Washington, DC. For the past 16 years, I've been there. And myfocus is particularly on our patients with brain tumors or leukemias, and also our kids withneurofibromatosis, which is a particular genetic condition that some actually quite a fewchildren had. Before that, I certainly saw kids with a lot of different kinds of challenges in theirlives related to learning related to social function related to social, emotional kinds of things. So I'm sure we'll talk a little bit more about neuro psychology, but essentially, what I'm doing istrying to understand children's strengths and weaknesses, and how we can build up theirstrengths and minimize the areas that are more challenging or kind of accommodate or dointerventions to do that. So I'm sure we're gonna talk a lot more in depth about that. But I think that's probably a good summary of what I do on a daily basis. 03:02 I love it, and you're phenomenal at your job. So there you have, you know, the we do a lot ofconversations on this podcast about educational impact, and supporting children through thatspecial ed strategist lens. And today, we are taking it to a different space in terms of the medical model. And so we're going to dive in today about the medical model, but then also,how does that relate to the educational model? Because it becomes very confusing. And the two worlds do not speak very rarely. So being informed through our discussion today willhopefully help parents and professionals have a better insight on how to bridge that gap. 03:48 Yes, yeah. And I know, this came up from us just chatting a little bit. And this kind of sparked some ideas for us to talk about. Because I think it is something that's not acknowledged maybeenough and certainly isn't addressed, maybe enough. So yeah, I mean, you know, what, whatyou and I were talking about that I thought was helpful, and I talked to a lot of parents aboutthis is that I feel that our medical system, as it were, and our educational system are two verydifferent, I'd like to think of those two planets with different inhabitants. And, you know, I thinkthe biggest difference between those two models is one is more preventative or proactive, andone is more reactive. And I'll say at the front end, I'm not trying to put down one of theseplanets, or one of these systems. Although I am biased on the medical side, on the proactiveside, both as a professional and a parent, so I'm sure a lot of your listeners, as parents will say,Yeah, we don't like to wait until our kids you know, have a massive pro Long before we startgetting into action. So to me, that's one of the biggest differences between these models. Whymight that exist? Well, I think that actually, sadly, comes probably down to monetary things,right. So when you think about the medical model, someone might come to see me, and theirinsurance usually is going to pay for them to see me or another physician for some kind of careor diagnostics. And there's a lot of motivation in that world for preventative medicine, right. So we don't want someone to get, you know, have a full blown diabetes, we want to figure out thatwe can address weight or other things that might prevent that happening, because obviously,once that happens, that costs a lot more in the in our public education system, it's really the opposite of that the funding to a school is going to come once a child has been identified withessentially a failure that they cannot, they're not meeting the expectations in that setting, theyare not able to meet those expectations. And then of course, as maybe many listeners mayknow, there's a whole process involved in determining that documenting that implementingthat so the financial support for our school comes, then. So you can see already how this sort ofbreaks down a little bit, or a lot, in some cases, between these two settings. So I think those are the big. That's the main piece, I think that has us struggling sometimes to help our kids,especially those that have different medical conditions or something that's relevant in that inthat space.
06:48 And I loved how you frame that because a lot of what I do and helping parents is guide themthrough that in the public school setting the evaluation and eligibility process. Because it is a process, there is a timeline. There's a lot that takes place. And oftentimes parents come with that let's wait and see. So kind of aligning with what you're saying in terms of let's wait and see what happens. Because they may not be failing, they may not be struggling or strugglingenough that it impacts them educationally. And so parents that are confused, because theyperhaps did go outside of the school setting public school setting and receive some testing,some neuro psych testing, and then they have this diagnosis, or they went to a pediatrician,and they have a diagnosis. And then they're thinking, Oh, well, I get an IEP, I have a diagnosis.So that medical model and the IEP, how does that look for a family in terms of I have thisdiagnosis. But the school system is still telling me wait and see what can what are ways that wecan bridge that gap between the medical model and the educational model? 07:58 Yeah, I think that's this is a vital point for for us as parents to have an understanding about sothat we can be doing the best things for our kids. Right. So yeah, again, I think the other theother difference, right, so you can get a diagnosis, whether it's a medical one, or it's somethinglike a learning disability or ADHD. So this doesn't, you know, it can be medical, but it also canbe a sort of a learning based weakness. You know, as you know, Wendy, within the schoolsystem, the, the impairment has to be a significant enough. But it also has to impactspecifically, the child's functioning in that particular environment of school. And this is, I guess,another difference, too, that we didn't talk about when we were sort of comparing thesesystems is, you know, in, in my world, I care about every aspect of the child's functioning, notjust at school, but also at home with friends on the soccer field, whatever they're doing, right,that more whole child or holistic approach to thinking about an individual human and their dailylife. And again, this is sort of I definitely don't want this to sound like a put down of schoolsystems, but the school system is focused on one aspect, and that is within that educationalsetting. So I have definitely had instances where I'll give you the one of the easiest examplesthat I run into the sort of this discrepancy with, and that's for any of our children that maybehave a motor deficit, right. So where are you might be saying, you know, listen, not only havewe tested kind of some of their motor functions or their ability to use the pencil and drawthings, that visual motor piece, but, you know, this child's parents are coming in and talkingabout that they have a medical condition that, you know, that aligns with that is oftenassociated with a motor problem. And so we'll be saying hey, in The school system this, thisprobably effects a child and occupational therapy would be great, right? And so then you parent goes to the school and the school says, well, we can read Johnny's writing. And, youknow, we're not seeing this big issue, as it relates to Johnny's day to day functioning in hisclassroom, this is a really hard thing, because then they will say, No, we're not going to putoccupational therapy in this IEP, right. And then parents will feel very frustrated about this,because it's clear that there's a motor problem. So this is one of the easiest examples, becausethis is the one that happens, I would say most frequently. So part of it is trying to, for me, helpparents go okay, like, what we do need, I think, get our heads around whether we feel like it'sright or not, is that that school setting is very specific just to that, it does not mean when theschool says no, that your child doesn't have that challenge. It just means they're not. It's not, it's not significant enough, in their opinion, to provide a service there. So I think for for me, I want to try to help parents understand that the school isn't a therapeutic setting, right, trulyright. And that sometimes the best course is to and again, I understand there are a lot oflimitations to this for some families as well. But the best course is often in those scenarios to goto outside therapeutic settings, right occupational therapy that's in a private setting, for acouple reasons, one, that you'll actually get what you are looking for, but to the truth is whatyou know, in this is the other thing I get asked sometimes is, what occupational therapy lookslik e in school versus in a private setting is going to be quite different. So often, even if occupational therapy, for example, is built into an IEP, it's a consultative service, it's not atherapy at all, okay, that we know is sort of May we're gonna put something on a pencil, wemight get a slant board, you know, there's some, there's some things that can be plugged in,but it's not really a therapy, like we are all thinking about an intervention to actually improvemotor function globally. So I think it's important to understand those differences as well. And to, you know, for me, again, as a clinician and a parent, it's like, adjusting our expectations ofwhat these systems will or can do as they exist. I think there's, I think we'd all agree, we couldtalk for hours about how we could improve our public education system, in a lot of ways. But we, you know, I always like to ground in like, this is what the systems are at the moment. And so how can we navigate these in the most successful ways for our kids. So I think that's an easy The easiest example. But these kinds of things can happen in other ways as well, whetheragain, we're talking about intention, or we're talking about a medical condition that we feelimpacts our children on a day to day. But again, the school has to then determine if that meetstheir criteria for you know, what they'll call it an impairment or a disability. But then the second part D is that impacts your school day. That's fine. So that's a tricky one. Sometimes
13:24 it is a tricky one. And setting those expectations is important. It's critical for parents, and I lovehow you described kind of what that model would look like, again, with ot in a school settingversus in a private medical setting. And you know, when I tell parents, if you absolutely, we'relooking at that whole child looking at the daily life, kids are in school for quite some time. So can we you know, and oftentimes, what's impacting a child outside of school is impacting thatchild inside of school. So it's really setting up that not argument, but setting a very clear pathto what are the impacts for the whole child. And that's why we call it an educational impact.Because oftentimes, I've seen schools and districts and teams get focused on the academicimpact, but let's look at the it's called educational impact for a reason from the time you get offthe bus. Go throughout your whole day to back onto the bus and so thinking about, you know,pencil grip, but is it impacting how you're eating your lunch or your times in recess, or how youcoordinate and interact with your peers and so really educating, setting those expectations,educating parents on, you know, it's beyond the academic impact, where is that and then also,having that conversation with parents that yes, you may get services within that school setting,you know, related services, speech and language ot PT But what happens if that provider is not available? Right? And you know, and now, recently with our decline of folks wanting to be ineducation, sometimes school is pulling different staffs to cover classes. And it's happening. And so I then encourage parents to ask the question, when was services? When did it take place?Where is it taking place? And ask a lot of those questions. So you better understand are those services actually happening within the school day?
15:35 Right, right. Yeah, I think that's definitely important. Because I think we all know, when our kids come home, and we say, what happened today? Did you have this even if it's just a classquestion, but then particularly if a kid you know, if your child is someone who should berestoring services, it's hard to know, based on our kids report if something happened or not.Right. Right. So So yeah, I agree. Because we would hope that our child would be able to say, yes, you know, Mrs. Smith came, and we did occupational therapy today. But they felt telling us what happened or didn't happen. So, yeah, I mean, listen, you know, this is a little aside fromour topic, but I'm sure you you work with parents, often a parent is part of the SpecialEducation team, you are an equal part of that. I don't think all parents understand that. And, you know, another, you know, that's another thing that I tried to sort of, again, educate like youhave to is people to understand that, that you have the right to ask questions that you have theright to not totally agree with a plan and come back to the table with it. You know, and so I do feel like many parents feel that they have to sign off that they have to move forward quickly,because I'm sure there's, they feel pressure to do that, because school's wanting to close thischapter up and move forward. But I think it's okay to, again, as you say, ask the questions, get the details. You know, because if we don't, and we just assume it's happening, you know,hopefully that is the case. But we've seen big city wide scenarios where kids were not getting any of the services. And that's illegal. I mean, when it comes down to it, you know, that that IEPis a document that protects kids or their that 504 plan. And I think that's, that's, again, I think,you know, one of the biggest things we can do to help parents is educate them on all these allthese things as much as possible, their rights, their kids rights, the expectations, having anunderstanding, because I think, you know, what we talked about, first of all, understandingthese systems and their differences, allows a parent to come to that table as as a member ofthat group, to me in a in a way that ends up being more positive, that's a bit balanced, becausea school is going to respond to a parent in a different way, if there's an understanding, andthere's like, let's problem solve this. I know the differences here, I understand what we're working with two different approaches. But how can we work together to bridge this is differentthan when I have families that feel I'm looking for all my Therapeutic Services here at school,because my child does have difficulties, you know, that doesn't tend to end up as positive or asmuch of a team working together towards, you know, helping your particular child. So, I do think that, you know, what you're doing every day is such an important piece of this aseducating families on a system that's like very foreign, often, as well as the medical systemsfor and as well. So it's meant to be to be honest. So I think the more we can get peopleinvolved and really help, you know, understand how these work and how we can problem solvethem. We're in better space than we were before that.
18:49 Absolutely, absolutely. Can medical staff or a team be part of an IEP?
18:56 Yes. Now, I don't know that they're necessarily considered a true team member. They're sort of a guest to that process. But yes, people, you can invite anybody you'd like to an IEP meeting?You know, neuro psychologists who have evaluated children or can be part of that a lot. Thank thankfully for telemedicine and zoom. Now, we're, I think, more able to we were able to sort of travel in our car to schools very often, but we've been able to be involved in meetings a lotmore, where we can speak to our own test results, because sometimes there are questions or aschool would like to do additional testing and figuring out if that's necessary or not, can behelpful. But also I think, again, you know, to the point of these systems, you know, can we bringto those meetings? Can we assist a school and understanding what sometimes might be amedical condition that they have? No, they've never had another student with you You know,the kids that I work with, that's not uncommon that the school is not familiar with their medical condition, their medical disorder and how that does impact their daily life, including in theschool system. And I'm not even just talking about physical needs, some of them are right,whether there's a fatigue issue and, you know, but even those cognitive and social aspects of aparticular disorder a lot of times, school, you know, I think it always tends to get simplifieddown to the checkboxes. And I think actually, you and I were talking about this as well is thatvery rarely, maybe never do, the patients I work with fit nice and neatly into one of thecheckbox categories on the piece of paper that we're trying to complete. So this is problematic,because on one hand, somebody wants to check the box and move it forward. Right. And there's only so many categories to work with, on from our side, often we're saying, well, that's not you. And that might be part of the story here. But there's a lot more to it. And so I do think that's a particular challenge, to get our to convey what we need to about, again, this holisticapproach to our kids. And you know, your point about motor deficit as again, just our easy ishexample, doesn't just affect the kids pencil to the paper, right? We know very frequently thatkids with motor problems are not able to play on the monkey bars, they're not kicking thesoccer ball or shooting hoops on at play time. So that impacts a child's sometimes more significantly than anything else. So So to your point, like it's not just about that so many of thekids I see would meet criteria for ADHD. But that is not the whole story. It's, it's, it's more specific than that. But again, that that is something that I think we just have to continue to tryto educate the rest of the team, sometimes you'll be successful, and sometimes you won't, butI think we keep at that the best we can we find resources to offer. And again, we try to helpparents with that, you know, here's something that's been written for teachers to helpunderstand this disorder a bit better. You know, I always say it's true of all psychology, like wecan't control the other people around us. So we have to sort of figure out what are we going todo? How are we going to navigate this? Even if you in life, right? It's totally true in life and life?Right? Yes. You know, I think we're all still working on that. But I think the sooner youunderstand that the control you have is just a view, then the less distressing it feels, and theyou know, the the more success you can have in moving things forward. Because it's easy toget trapped in the loop of like, I wish these people would just do the right thing, right?
23:10 It is yeah, absolutely. It is. But I think you know, what, what I'm hearing and what we're seeingnow, in terms of the medical model and the educational model, you're right, in an IEP, that IEPhas little boxes that we have to go through as part of a team member. And I've sat on both sides as a parent and a special educator at that IEP table. But we have students that are impacted, like you said, cognitively, socially, physically, and some variation between that and they don't fit in a box and, and especially our older students and middle school, high schoolwhere they have multiple teachers, you really do have to continue with that education.Because that's where unfortunately, sometimes labels that are not part of your student'sprofile, your child's profile, get put on them. Because of a somebody's not understanding the entire picture. And it's tricky, and it's complicated, and people are busy. And so it's that constant teamwork, collaboration, conversation about your child, which I do understand from amom's perspective can be overwhelming and exhausting. And so really kind of either reachingout to somebody that can help you continue that conversation and be that quarterback, like aneducational therapist or somebody an advocate that can help do that or just be prepared thatyou're going to be having this conversation about your baby a lot. And it's not just at your annual IEP.
24:44 Yes, I think that's another great, great. A couple points you bring up that make me think about other things. Yeah, you. The system is set up to meet once a year, right? Maybe once a yearand evaluations not once a year, but So, when in working with children's, there's a lot ofdevelopment that goes on in childhood. Right? And so, you know, that's exactly right. I think it's, it's a very hard additional parent job. But being on top of that, always asking questionschecking in is important, because your child is one of many with IEPs. And to your point, this,the teachers are really trying to do everything they can for a lot of different students. So they're not going to be checking in on each kid necessarily every day the way that we asparents would, and ensuring that nothing has fallen off, right in the context, I guess, again, Ithink, to your point in this current day and age, where we're having to pull people to help out inlots of different places, I think it's more likely than ever, that things are getting skipped to hereand there, or that something has shifted. And now all of a sudden, this isn't happening anymore on a regular basis, or whatever. So I think that's important. And if I can go back to sort of thesort of checkbox, part of this conversation, this again, again, would be another difference forme in how I'm operating in a medical space versus an educational space. So it's sort of I'm going to align diagnostics with this categorization in an educational setting. diagnostics to mein a medical setting is extremely important not to put labels on kids, because I kind of I'mpretty conservative with that. But to get it as right as possible. The reason that matters to me is because if I have, again, I can give a good example of a case that this falls into if I have achild that's come in and up parents question is, Does my child have ADHD? Or does my childhave anxiety that's making him or her look like they have ADHD, because they can look verysimilar. It's really important for me to figure that out, whether it's one or the other, or maybeboth, because some kids really do have both. And that matters, because what I'm going to do next is dependent on that. Right? So if I get it wrong, and I say, I think this kid has ADHD, but infact, they have anxiety, and then I send the parents, like, let's go get some treatment forADHD, well, I'm probably wasting a lot of time, because that's not really going to do the trick,the child is still going to look like distracted and things because I I'm targeting the wrong thing,or I didn't figure it all out, you know, or vice versa. So to me with, with the educational systemset up the way it is, the same thing really aligns, right, because if you're checking the box forADHD, or you're checking the box for autism, or you're checking the box for, you know, thebest other health impaired, but there's some general associations with those check boxes,right? So I have now a standard set of accommodations or interventions I might do based onwhat box got checked for you. That was probably aligned to some extent, but like, again, I thinkwhat what are we missing here? It's just it's, it's an overly simplistic system for humans whoare pretty complicated, truthfully. Now, having said all this, it sounds like I'm saying this is terrible. And this system doesn't work. And what you know, we should be mad about it? No, I think, again, it's the recognition of how it works. And then what do we need to do as professionals to help parents or parents to help our kids to go, I understand this now. And now I need to hear, here's how I might need to navigate this in a different way, or educate more orask for different kinds of things. And I think, again, we as professionals can be helpful with that,you know, and trying to figure out what are some other alternatives that aren't just thestandard? What do we need for this particular child to function? Well, in this setting? It's notstraightforward or easy, but we can try.
29:10 You know, and it's critical. As you're talking about diagnostics. You've listed ADHD, anxiety, you know, brain tumors. All of that. If you think of the educational side that IEP, the federal law gives you 13 categories. Yep. And those from ADHD, anxiety, brain tumor, and some other oneswould fall under Other health impairment. So as a special educator, if I receive on my caseload,a student that has Oh hai it's my due diligence to dive deeper to see okay, what is what doesthis look like? Because those three things I just listed look extremely different, and they'reextremely different for each child. And so kind of back to your ends? How did you help parents?Well, I know you, you educate them on, you know, being very thoughtful in terms of thatdiagnostic component to help kind of give a brighter picture of what is happening with thatstudent. In terms of recommendations for the school team, do you write goals? Do yourecommend goals? Do you have accommodations? What would be the best way as, again, if I'mlooking through a parent lens to say, alright, I'm between these two worlds, and having mychild educated outside of the school system, or evaluated pardon me, outside of the schoolsystem? What can I see to help better paint, you know, with a broader brush of what'shappening with the students so that I can then articulate it to the team in a way that's going togive the best outcome for my student? 30:54 Yeah, I think you know, within the context of doing a neuropsychological evaluation, you know,diagnostics is one piece of it. But what we're really trying to understand, like I was saying at thebeginning is the whole profile of a child, everybody has strengths. And everybody hasweaknesses, right, and how great those are, how extensive those are, again, everybody'sunique. And sometimes again, our kids that have different backgrounds, from a medicalperspective, are going to have multiple areas that are more challenging for them. So we're looking in our profile for this pattern of strengths and weaknesses, the diagnostic piece is sortof the final trying to really pulling it together. But that's not the most important piece of information in that report. It is helpful in some contexts, but to your point, three kids with ADHDare not going to look exactly the same. They have similar symptoms, that's how they are diagnosed. But they're still unique individuals, one might be very hyperactive, the other mightbe predominantly inattentive. That's two very different needs that those children would have.So within the context of the the evaluation, I'm looking for the house, right, I'm looking for howdoes this child manage this particular set of tasks? Maybe it's a memory test, maybe it's anattention test, or an executive function test? If they're good at it, why? If they're not very goodat it, why? Right? So again, even the data itself only tells part of the story, right? And you know,if anybody's had an evaluation, hopefully, what you've also gotten with that is the qualitativeobservations of the neuropsychologist within that testing. Sometimes that's one of the most important pieces of the evaluation, honestly. So again, another example, if I give a reading task for I'm asking kids to read single words, right. One of these tests is not timed. So I can get two children with the exact same score on this test. But if I look, if I recorded them both, you couldsee two very different scenarios, you can see child a going to teacher to do reading rightthrough this list of words like it was breathing. And then you can have child B, since this test isnot timed, taking 20 minutes to do the same list of words as the as child a did in three minutes.Now, that's important, right? Because what those kids look like in a classroom is drasticallydifferent. Even though if you looked at their score, you'd be like, they should look the same inthis classroom. So So to your question of like, what are we doing with all that? I, you know, Ithink myself and other neuropsychologist trying to be very specific about what a child needsbased on this level of data analysis, I guess, or or understanding that child. So to me, child B definitely needs more time for reading. Right, and probably some intervention on fluency right.Now, hopefully, I also did a fluency test to document that but you know, and child a, maybetheir difficulties are with comprehension and not reading the words at all. So what they need is totally different. So then we're really trying to the best we can, in that moment, align ourrecommendations as specifically as possible for that child. And I will say sometimes thatcreates challenges in this cross talk that we've been discussing today between these systems.Because sometimes I think I have really great ideas for recommendations for these children.I'm like, do this and we are going to, you know, I think this will really make a difference in theirlife. And the school sees that and goes, you are so out of touch with what's available at thisschool. Nice try, right. And this is really actually a challenge for me as a Professional is to try tobe specific about that child, but at the same time fit into what's available. And that's not an easy task. And that's where the collaboration between myself and the parents comes from themost is because I'm saying, listen, these are all ideas I have, some of them are going to jive inthe school system, or we can take it and tweak it to be this, but how we can work there. And some of these may not. And we're going to maybe find a different way to do this intervention orhelp our child and this way outside of that system. But this is one of the biggest challenges. And I think, again, we try to be very thoughtful. To me, I have, you know, as a nurse, I just haveso many audiences and people I'm trying to, I guess, help. First and foremost, I want to understand your child as intensely as possible. And I want to give you as many specifics as I can, at this moment for what can be helpful. But I'm also trying to tweak that. So that I'm not my reports, not thrown out the window in an IEP meeting, because a team feels that I don'thave any clue what is possible at school. Right? So it's a real interesting challenge for me, but Iagain, I feel that when parents and I talk together, then a parent parent can say, oh, you know,they actually have this resource room. And I bet we could do these things in there. So I do relyon parents to give me feedback on what is your school look like? What's the setting, what's theteam mentality, et cetera, so that we can fine tune some of these things together. But that's where we're coming from, in terms of trying to be very specific with our recommendations,
36:58 when I think it's also, I love what you do. And your reports are sync and clear and guide parents. But a lot of that is what you what the essence of what you do is in terms of, again,educating the parent and help guiding them of what to do. And I would think you can alsoprioritize, you know, if you say, right, I see these list of things. And then the parent can helpguide and prioritize so that the team as a whole doesn't feel overwhelmed. Right. So if you walkin, and you're like, here's 30 things that we're going to do well, a it's hard to measure, right?What are we doing, actually working? So let's prioritize. And I think that's where that parentinput statement, when it comes to an IEP is critical in terms of where do you see your child andthree months, six months, a year, and then I always encourage parents that have about twoyears, five years so that you can start thinking ahead, getting on list if you need to, in terms of getting additional services that are provided through federal funds, that may not be availableright now, but starting to get on the list. So I think having that understanding and prioritizing really helps. How do you help parents translate that quantitative that why how do you helpthem, then take that knowledge? Because it's, you know, a diagnosis is scary, it's, you know,confusion, it's fear, it's worry. And parents don't want to fall into a pigeon hole, or these limitedopportunities for support when it comes to their baby. And so how do you help parentstranslate that why, in a way that the school system is gonna go? Oh, okay, I can see this.
38:40 Yeah, I mean, I think that it's telling your story. You know, the way I get to know about mypatients as they are to me, and these kids that are in my office is that is partly that, as we'vetalked with the parents, and they've told me the real story, right? Sometimes with water tears,because there's stress and there's pain and there's worry about your child and your child isstruggling. And often when they're in my office, things are usually not going great, right?There's a concern or there's a you know, a worry. That's how I get to know the depth of thisperson, right? And then I'm, you know, I find that what I'm doing is taking so a parent mightcome and say, These are the things were worried about. This is what we're seeing every you know, on particular days. These are where the challenges are. And then I can take my test dataand my observation and again, I only get one good day usually with kiddos. So I'm, you know, certainly don't have the depth of knowledge of a child that their parents do. And to me that's a really important piece that I say to parents like you are the expert on your child. I know that systems are out there that want my signature on something But the truth is, and I'm okaybeing the parents voice. That's how I see myself, I'm not really the expert on this child, I mightbe able to, and often pull things together to help understand how did these two behaviors thatseem very separate, actually, those go together. So I think that's where my value is for parentsis putting the pieces together, that you've brought me to make it more manageable, moreunderstandable how these things go, and then how that understanding can alter how we'regoing to respond to address the concerns that we have. But you know, so, to me telling yourstory, and again, some people are not going to talk and affect them to hear your story. I find that hard to understand. But that is true. And this is back to our point of like, we can't make everybody feel our feelings, right. But we can try. And so I do think that's the part where it'slike, yes, this data is helpful, but it's not the it's not the core of what we need to be getting at orunderstanding about our kids. And I so I do think parents having an opportunity to tell the story,like they tell me is very, it's very important. Whether somebody's going to decide you're the expert on your kid or not. I think if you can know that in your, in your own, you know, heart, then that's okay. But that's That's definitely how we can I think convey more about each of ourkids and their uniqueness. And say, I understand this is a system that needs to classify. But can we do that and also understand that this is does not wholly explain this student like it? That'swhat? 41:54 I've got a couple questions here. I'm gonna. So how do we open up resources for parents thatare available with a given diagnosis? Or not even like, where could a parent start to betterunderstand resources, whether it's within the school or outside of the school once they're givena diagnosis?
42:15 Yeah, I mean, I think for a lot of our kids that we see that are medically involved, it's in someways easier. Although I hesitate to say that these days, I feel like it's very hard to accessresources, especially mental health resources, right now. It's a real, it's a real problem, honestly. And something that sort of bothers me on a daily basis is that even as a practitioner, Isometimes have trouble getting people connected with what they want. But, you know, your,your, your physician teams, and your psychologist, you know, anyone you're working with, is agood place to start. But I will tell you, I think where parents get even more than they get fromus, is in these parent communities, are these disease specific communities or, you know,different community and I hesitate to say Lexington, you do have to be careful. From an online perspective, I think there's a lot of, you know, things that can make people feel worse, or is notparticularly helpful. That might be a, you know, a group online, that's really not offeringassistance, but just kind of a space to get more negative. So I think, you know, again,professionals can help with what organizations are out there, but I do think, you know, in ourneurofibromatosis community, it is amazing how the parent community helps, and this isn't juststatewide, this is nationally, they have really come together. And it's such a positive I see thesee the benefits for not only the child and the family, but again, I think then as people were arelocal to each other one parents saying, Hey, I, you know, this person was fantastic for somebehavioral therapy for my kiddo that had autism, or my kid that had ADHD or some otherchallenge. So I do think that's one of the richest areas. So then it your next question probablybe Karen, well, how do we get connected with those people? Right, nice idea, but where do Ihow do I do that? And I think again, you know, for me, I might this might be a little too limited,bu t for me, I know where some of these Parent Resources are based on brain tumor neurofibromatosis. And so I think getting with, you know, being with specialists, they often arevery aware of this, but even if you're talking about a child who has no medical background,they've been diagnosed with ADHD and it's a pretty straightforward situation. There are national organizations like Chad right, and they do have parent group offshoots from thesenicely known organizations. So it is a little bit about searching for those things. I would You know, not so much Facebook related things, but these organizations that have been around along time that are well established or recognized and have, you know, they have had a historyof really being positively impactful for families, I think these are places that can, we can start.But But again, every family is unique. So I try to offer those, also those specificrecommendations to families based on our time together so that I can help guide them at leastin a direction that's getting at something more specific, I do think it's challenging to just getonline and start searching, if you're, you know, a family that's not so connected, but I wouldrely on your providers to help you with that. And it's okay to ask, like, I think people are afraidthat they're bothering somebody, right? I went to you guys, like, I always tell people, pleasejust reach out to me, please do not not reach out to me. Because I can give you something pretty quickly. You're not bothering me ever. And still, a lot of people don't reach out. And I know they probably could write but you know, we really mean that. And it's it's not that cumbersome for us to answer a question to, you know, lighten the load event for families.That's why we're here, we're here to try to be helpful. So it's okay to really reach out to yourproviders, whether it's a pediatrician, you know, a nurse practitioner or oncologist, it doesn'tmatter, I think everybody is there to try to be helpful.
46:35 And, you know, I think as a parent, and it's incredibly important to have the support groups,because sometimes when you receive a diagnosis, it feels isolating. Because, you know, your friends, uh, you know, your adult peer groups, or whatever don't seem to have their childrengoing through that. And so by having that peer, that network that you can turn to, to talk aboutresources and ideas, and you don't feel as alone as a parent. And that is incredibly important tonavigate this process, again, between that medical world and educational world, because youcan ask parents that have already gone through or even, you know, only a step ahead of you,but they can say this worked really well. And then you can say, Okay, this is how I need to do it.So it gives you a platform to ask questions, to learn additional things, and then have thatconnection, that community so you don't feel isolated. Coming from this place of fear and love with your own baby.
47:35 Absolutely. And somebody's always ahead of you. And somebody's always going to be behind you in the process. So it to me, it's a very beautiful system, because you get help fromsomebody, but then you also are able to give it and it's just such a nice, it ends up just being areally valuable community and in a way that you can engage regularly where you may not feelthat you can do that with your providers, right. And again, it's different, I do not have a childwith any of the conditions of the kids that are in my office. So while I feel that I can understand many things, I know in truth, I don't know the reality of a parent's experience. And that's important to acknowledge, but other parents will have the true, you know, the true feelings andexperience that you have as had as a parent, again, whether it's something that feels veryserious, or seems less serious, it's all serious, it's your child, right? It's all important, it's all andyou know, there's one thing is not worse or better than the other, it's all your own experience oftrying to make sure your child is good is going to go, you know, we always talk about the goalof all this is that this child is going to go out into the world one day on their own and live the lifethat they want to live. And that's the goal of all this, right? It's can we get them from here tothere, whatever the challenges are, and we're trying to keep them keep them moving in thatdirection. 49:04 We all know that great things happen when there's data right to reference. Can you talk a littlebit about the testing report? We've kind of mentioned it throughout, but how can reports beused to set up a student for better outcomes in school? 49:20 Yeah, I mean, our intention, right is and I always, and I say to parents, this report is a tool for you. So I always tell them if something doesn't make sense. If you're reading this, and you'reconfused, you need to get back with me because my job as a professional is to present theinformation in a way that is understandable to you as a parent, and to a teacher or schoolsystem, and to the physicians that have referred your child to me perhaps right. So so I think over 16 years, I've got a pretty good system now, but, you know, reports can look a littledifferent, but I would generally say they have the same components, right? So they're going totalk about the history of that. child because that's important to understand risks or other thingsthat might impact might have impacted their development. You know, we will then summarize and what we're looking for in our testing is themes and, and data, that kind of what we say hangs together. So one bad score, and something isn't really important. So we might say, hey, that happened. But guess what the fire alarm went off during the testing. And this is you cankind of not worry about this particular score, but we're going to put together the story. This is the story of this kid, these are the strengths that this child has, these are the areas where thereare more challenges or difficulties. And this is how those are impacting his or her life. Then after that is, you know, perhaps if there's diagnostic, if there's diagnoses to make, those wouldbe should be included in the report. And then it should include all any and all recommendationsthat we think are going to be helpful. I think your point Wendy earlier is very important, too.And I've started really trying to do this with families over a number of years now of prioritizing,because I think, again, as a clinician, we realize I was trying to be helpful with giving you 600recommendations, but realize that is not always that helpful. So So paring those down, youknow, I felt like I feel like we were trained to believe that more is better. But I don't feel like that's always the case. So I have definitely worked with parents who say, Listen, I know this isoverwhelming, because the reports are overwhelming, right? Even a relatively concise one likemine, including the data tables is probably 12 to 14 pages long, right? So it is overwhelming, itis a lot to take in. I do this every day. So I understand these data points, I understand what I'm saying. Most people don't do this for a living. So it is really important that I'm as concise aspossible that my recommendations are as meaningful as possible and as specific as possible.But even then, I'm still going to have a good bit of faith in there for you. So I have said to parents, listen, this is there's a lot here. These are not totally prescriptive, right, these are ideasto pull from, you're not going to do all these, some of them you may never do. You may try one it works does not work so well for your child or in this circumstance. But you know, my second one works better. So So I do try to say these are all bank of ideas that we can you know, you asa parent can a partly look through and go I know this is not going to work for my kiddo,because we've tried that. Okay, great, right? Like, leave that alone. But then I say, here are my priorities, right. So if you have a child with anxiety and ADHD, and I don't know which one'sworse, I'm probably going to say, let's look at here's, here's what we're going to do first.Because if we treat the ADHD, that's going to help us understand what's going on with theanxiety. So let's start there. Right. So I'm going to prioritize like the top three to five things. And in some instances where there's a lot going on, I might say, we're going to start with these twothings. Let's get that going. And then circle back to me, then we'll come back to where we are at that point. I also try to help parents with their education meeting, right. That i i recommend parents, you know, with there's two parents sit down together and say, out of the things I'vesaid, What, especially if you've tried some of these at home, and you know they work, writethese things down, go to this meeting with your top three requests, what's the most importantto you, out of maybe these 20 things that we're trying to address? We won't do them all at onetime, and neither will the school. But if I think if you can go in with a pretty focused agenda andsay, you know, this is the outcome of this evaluation. We know it's a lot, but we'd like to, for us the priorities are A, B, and C, can we just start by talking about those and how we canimplement different supports or interventions around these particular three things to start. And then we'd like to have another meeting in three months to talk about how those are going andwhat additional things we might be able to plug in then on some of these other areas wherewe're concerned about but maybe we're not the, you know, the in the top three. So I think bybreaking that down, it seems very reasonable to schools, it seems like you're trying to workwith them and not come in with the list of 30 and they're going you people are crazy about it.Like we can't do all this stuff. So I do think, you know, by a school feeling like you understandtheir bare the boundaries that they have to work in or the limits that they have based on thesystem can be a really nice positive collaborative that ends up getting your child which arereally what they really need. So I do think that's an important part of that process of going in and trying to really be a team number as much as possible. And with some, what feels like reasonable starting requests? Right? I think you can get further with that than otherapproaches.
55:14 And it's not overwhelming. Yeah. And again, for 55:17 parents, it's overwhelming to get my report. Right. I mean, you know, it's like, oh, my gosh,what is all this? And then, of course, the end of the report will have an appendix with all thisdata. And I've shifted, you know, it's interesting, Wendy, because over the years, I've shiftedmy approach to writing reports, how I've reported certain things. And I tried to get feedbackfrom families on this to do better, because, you know, there's been different strategies I've hadover the years, I think some of them more successful than others in how I convey what I know.And what I've learned to back to the family, in that written document that is meant to be a toolfor them to go to their pediatrician or to their school, or to whomever to say, I want you toknow my child better this document does it. And I can also speak to that I want you to be able to speak to the document, if I'm not there. So it is really important for me that it's acomprehensible document that you actually feel like you can navigate in a meeting. I love what I do okay, on 56:23 you do I read them? Or? They're phenomenal. So kind of as we wind down our conversation, what did I not ask? What did I not know enough to ask? 56:37 Well, I think you're pretty on on target with with it. You've been involved with me for a long time. So I think you listen, I think you actually have a very unique perspective in terms of whatyou do, and also our engagement together. But I think I guess it's not necessarily what youdidn't ask, but it is one of the questions I know that you do sometimes ask. But what I think I'd like to say to parents, and I think is really important is trust your style yourself and yourinstincts about your child. And understand that you are probably doing way better than you think you are. You know, this is usually my parting words to many families is there's a lot offear in families that I've missed an opportunity, I didn't pick up on this thing, or I didn't go dothis or get this assessment or do this intervention. And now we're here. And I really don't allow my parents to do that to them. Because we're all humans, your instincts are better than you think. And so I think it's important to follow them. I do think that many parents are surprisedwhen I say actually, you're doing a bunch of things I would have told you to do. So you're doingamazing, you understand your child, you're intimately connected with that other human. And I think more parents are doing all the things that are helpful. Without even realizing it. They think they're coming to me for an overhaul. And usually, I'm just saying, we just got to tweak acouple of things, we have this beautiful foundation of love and support. And you're you're you're adjusting to your child without even realizing it because of being connected as a parent.So so it's not even something you didn't ask, but something I think is really important forparents to take away when they work with me is that it's okay. You know, we have not destroyed our children by starting an intervention six months later, we haven't. If anything,there are more beautiful things going on within families than they realize and more things thathave actually promoted that child's development. And I love that part of my job to say you areactually doing a beautiful job with what you're doing. And I'll help you tweak a couple things or problem solve a couple of things. But to me, that's a big message for for families, particularlywith kids who really are struggling or have, you know, very significant history is of havingmedical or learning difficulties. Because it's not it's not easy. It's very stressful. It's very hard. You love them, and you want them to be okay. But you're doing great. I will say that.
59:29 I hope that folks that are listening, just take this little clip of and just make it their daily mantraof Dr. Walsh saying that because it is true. It's you know, again, you're from that fear and loveand when you're in it, it's hard to step back and look at that 30,000 view to say, Who What am Iam I doing it? Am I doing it right? And I think that could go to any parent, regardless if there'san impact in any way. What would you kind of as week Close out, you gave some insight forparents, what would you say for either educators or professionals? Any tips in terms of bridgingthis gap? You know, back to the title of what we're talking about in terms of medical andeducational? Yeah, I 1:00:18 mean, I think that we all get very busy in our positions, right. And it's, I think you have to work hard at being present with the person you're with. Now, that's easier said than done. Right. Particularly, I think, for teachers who have a classroom of 30 kids. So I don't know, I don't have the solution to this. But I think trying to, if it's an IEP meeting, be as present as possible in thatmoment about that child, or if you're in the if you're a physician, or euro psychologist. Keepingall the distractions out so you can really hear what a parent is saying about their child to reallybe listening. Now, that's easy for me as a psychologist to say, because it's literally my job. But I do think that's the important part is really being present, and then hearing because, again, thevalue for me, and what helps me understand this, this child, and maybe what they need,doesn't always come from my data or a report or a piece of paper, it really comes from thehuman experience of sitting down with a family with that child and feeling what they feel a littlebit so that I think that makes the connection of like, I'm invested in you now I'm feeling this fearof the parent or I'm feeling this concern, I'm with that child and I can feel their, theirnervousness in when they're trying to perform. Like to me that I guess it's put yourself insomebody's shoes, I find that to be the most valuable data that I ever gather is, I'm able to helpyou more if I feel like I can at least remotely understand where you're coming from, and true ofchildren too. Because I think what I hope I've been good at doing is helping parents alsounderstand that behaviors actually related to anxiety. So even though it seems veryoppositional, let me explain what I felt with your child and what I experienced in working withthem. Because then you know, how I'm going to interact with that behavior is very different,right? If I feel like somebody is being oppositional, but then or I understand that that's driven byintense anxiety, I'm going to respond to that in two pretty different ways. One is much more likely to be positive and beneficial to the child. So I do think the putting yourself in somebody'sboots for a little bit is a really important interaction to have with with another humans ingeneral. Life lesson, life lessons by Karen.
1:03:05 Well, Dr. Moss, you are such a gem. And I hope that this podcast this episode will help bringclarity and support for again, parents and professionals that are working with our students on adaily basis and working with their own child. So I am so grateful for your time. 1:03:25 Well, it's always my pleasure and happy to have another conversation with you anytime youwish. 1:03:31 Not for a couple of years that we're not going to we're not going to wait that long. 1:03:35 No, no, absolutely not. It's 1:03:38 Thank you.
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