Helping Your Child with Learning and Organizational Challenges

Learning problems are common after a pediatric transplant. Learn what parents and schools can do to help.

Presenter:  Jennifer Katzenstein, PhD, ABPP-CN, Johns Hopkins All Children's Hospital


After a bone marrow transplant, child often have challenges at school with attention, organization multi-tasking and behavior. School interventions are available to help children feel successful in the academic environment and achieve their potential.

This is a video of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium

Presentation is 42 minutes, followed by 18 minutes of Q&A

Key Points:

  • Learning difficulties are common in children after a bone marrow transplant
  • Younger children and females are at higher risk than others for learning challenges
  • As children move to middle school, problems with organization and multi-tasking become more apparent
  • Children need to feel successful in school in order to want to put forth academic effort.
  • 504 plans and Individualized Education Plans (IEP) can help place children in the most appropriate learning environment

00:00  I'm Jennifer Katzenstein. It's a small group, so I'll get through this part of the talk, and then I'm going to be happy to answer any questions. We are recording, and so it provides us a nice opportunity to provide those questions and answers to people as well. As [inaudible 00:00:17] nicely introduced me, I'm a psychologist and neuropsychologist at Johns Hopkins All Children's, and we're going to be talking today about helping your child with learning or organizational challenges following transplant.

00:29  Outline of Talk:  Our objectives look really long here, and I'll be honest, they were shorter when we started planning for this, and so, really, my goal is to be able to talk to you about what to expect, what you might be seeing in terms of neurocognitive challenges, but then also talking about setting up educational services and setting up home interventions and school interventions for success. So, there are also some slides towards the end with some resources as well.

00:53  Difficulty with attention and executive functioning (planning, organizing, etc.) are common after a pediatric transplant:  When we talk about post-transplant neurocognitive functioning, it's really complicated by other types of treatment that the child may have received. So, what we know from the research is that we're looking at difficulties with attention, difficulties with executive functioning. That means planning and organization, multitasking, shifting, keeping our bedroom clean, keeping our backpack organized, and also processing speed. We'll talk through each of those things and also different types of evaluations and how we look at those cognitive skills.

01:24  Younger age and being female are risk factors for cognitive problems after transplant:   Girls are typically more at risk than boys. We used to think that younger age at treatment was a protective factor, and it turns out, as we were able to follow those kids longer term, we found that younger age of treatment actually becomes a risk factor, because we're impacting the developing brain. So, then at that point the brain is reorganizing with the goal of being able to utilize areas of the brain for essential level skills, which typically are language-based.

01:51  Also, pre-transplant functioning is a predictor of later transplant success in terms of cognitive functioning as well. So, if you were higher level functioning prior to transplant, we see that you had more cognitive reserve, and that serves you well post-transplant.

02:08  How inattention, poor executive function and slow processing speed affects learning:  So, when we talk about late effects of treatment, when we're talking about inattention, executive functioning, processing speed, all those cognitive skills play into things like learning and memory. So, if we aren't able to maintain attention, if we aren't able to quickly and efficiently process new information, if a child has more difficulty organizing the new learning that they're engaging in, then that won't go to long-term memory storage. So, while a lot of times parents talk to me about specific difficulties with memory, it's less frequent that it's an actual memory problem and more frequent that it's some aspect of neurocognitive functioning that plays into the initial learning processes. We'll talk a little bit about that.

02:50  Late middle school and early high school create greater demands of executive functioning skills:  Similarly, as we think about a child growing over time, especially as we get to the late middle school and early high school years, we have greater and greater demand on executive functioning skills, more planning and organization, more independence in that learning. That's also when our frontal lobe, the front part of our brain, is doing the most amount of development and continues to develop until age 25. So, when you hear about someone saying we're growing into the deficits, it means that we're growing into the time when we expect those cognitive functions to come online. Maybe now the brain can't support that as well as it would have been able to because that frontal lobe is continuing to develop. But there are some things we can do to support that.

03:32  Neuropsychological testing:  That's why, as a neuropsychologist, my goal is baseline, as close as we can to time of initial diagnosis pre-treatment to establish where we're at cognitively, and then annual evaluations to see how well our cognitive functions are coming online. If there is decline, we want to track that decline until it evens out so we know that maybe we've reached the point that it's going to be at. At the very least, there are different time points in terms of educational trajectory that we want to assess as well.

Big time points for me are 3rd grade, 5th grade, 8th grade, and between 10th and 11th grade. 3rd, 5th and 8th are times when we have pretty big transitions in terms of what kids are expected to do in the classroom. But then that 10th to 11th grade point is when they start thinking about SAT, ACT and college or post-high school settings. You're going to need a recent evaluation, as in within three years, in order to get accommodations on things like the SAT and ACT, but also for accommodations that we can carry over from high school to the college setting as well. I'm always happy to assess and talk about that as well.

04:38  So, there are two different types of evaluations and even a third type we'll talk about as well that you may come across when you're talking to your provider. As a neuropsychologist, I'm doing a neuropsychological evaluation. Almost always, for a child who has a medical condition that would impact brain functioning or who's undergone transplant, they're going to qualify for a medical necessity in order to get a neuropsych evaluation.

If you're going through your public school system or if you're in a private school and the private school is having the public school doing the testing, you're going to get a psychoeducational evaluation. That's going to be much more limited in scope. That may be just looking at IQ, maybe, maybe looking at academic skills. They can formally test them the way that we do in the schools, or sometimes schools rely upon grades and standardized testing in order to make those evaluations. Then sometimes they're including parent and teacher report.

05:28  The schools, if you're in a public school setting, they're required to reevaluate every three years, and reevaluate means they can reevaluate the need for further evaluation. My hope for all of my families is that they're already tied in with a provider outside of the school, so, that we're doing those evaluations anyway that we can hand them over to the school, work collaboratively with the school.

If they say, oh, no, we want this test or that test, then a provider should be able to do that to help accommodate school, even more so, for you so that you're not worrying about the school calendar, the school following through, because sometimes we can have some barriers and challenges there.

06:03  Neuropsych tests look at how the brain is functioning and deficits:  So, from a neuropsych perspective, I'm really wanting to know how is this brain functioning. How does this child think? How do they problem solve?

Was there an area of the brain specifically that was impacted from treatment? Is this in line with the medical history? Do we have appropriate expectations for this child in the classroom? If we're having more behavior outbursts and frustration tolerance, maybe we can make some accommodations or modifications to the curriculum so that we can better set them up for success.

06:30  Neuropsych tests also look at areas of strength:  Are there areas of strength that we can capitalize on? What does the future look like? So we can start talking about prognosis and what the future holds.

Many, many of my families have children that go on to college, and so it's a matter of let's look at where we're at. Let's look at what we can do. How do we make sure we're at a college that's setting us up for success and putting everything we need to have in place for success?

06:54  Difference between school psychoeducational evaluations and private neuropsych evaluations: So, as we just talked about, when you look at a psychoeducational evaluation at the schools, you're hopefully getting an IQ test. You're hopefully getting measures of academics, hopefully attention span, and usually parent and teacher measures of emotional and behavioral functioning.

When we start to talk about a neuropsych, we're doing everything on the left, but we're taking it further, because I want to know what that learning profile looks like. As we talked about in the beginning here, when we're talking about potential deficits in attention, executive function and processing speed, all of those components play into our learning, our ability to then retain that newly learned information in long-term memory, and how well we're also able to recall that previously learned information when we may be experiencing some areas of difficulty on the front end.

07:40  We're going to look at memory and learning profiles from a visual-spatial perspective, an auditory-verbal perspective. Sometimes we're doing a kinesthetic or hands-on perspective, because we want to see where that child's strengths are in terms of their learning. We'll also screen for fine motor deficits or visual-motor problem solving deficits. How well can that child take what they see, say, on the board or from their mind, and get it out through their hands? Excuse me. We're also looking at visual spatial skills, social pragmatics skills, social interaction, knowledge of appropriate social interactions with others, and language.

08:17  What is executive functioning:  So, executive functioning, specifically, is ... I wanted to be able to really go through it with you. On the slide, it's a little bit cut off at the top. In the middle, we're looking at the definition of each of the domains on the left, and then on the right, what it might look like if we're having trouble in one of those areas. These are all components, again, if executive functioning, that frontal lobe development. Initiation could be difficult, so not knowing where to start, avoiding tasks because they seem overwhelming. So, rather than diving in and starting somewhere, procrastination. That's what I hear a lot when we have initiation difficulties.

08:51  Inhibition can be a concern, having difficulties putting the brakes on. Shifting, having difficulty shifting between tasks. Planning can be difficult, so being able to break down a bigger task like a book report, a project, or a longer-term goal or a short-term goal into manageable parts and put a timeline to that.

09:12  Difficulties with organization: We talked a little bit about organization, so organization of our problem solving, but you'll see it's also organization of materials. Is this student having difficulty maintaining their backpack, maintaining their assignment notebook, bringing home the right homework and the right textbook?

09:28  Difficulties staying on task: Self-monitoring, knowing throughout the process of learning that they're able to be successful or staying on task, or changing a strategy if it's not working. Emotional control, managing our emotions, not having outbursts or explosive behavior.

09:43  Working memory –short-term memory and problem solving: Then working memory, that's our ability to hold short-term information in mind while problem solving. The example I used to use because it made more sense is that we would go to the phone book, look up a phone number, memorize that phone number, and then make it all the way to the phone to be able to dial it.

No longer an issue, because you Google it. Then you touch the phone number, and, poof, it's taken care of. But this still is an important task for us to be able to do. We have to be able to take small bits of information and maintain it in our mind while doing some type of problem solving. Not all of that information will transfer to long-term memory. We'll have almost just a little glimpse of it, but we still need to be able to do that for efficient learning.

10:25  Everyone has strengths and weaknesses in cognitive functioning:  So, what we see when kids have difficulties in some aspect of cognitive functioning [inaudible 00:10:30] ... Oh, sorry. It's important for me to note too that all of us have strengths and weaknesses in terms of cognitive functioning. So, if we're having an area of difficulty in terms of academics, we aren't feeling success, and sometimes that can lead to anxiety, and it can lead to avoidance of school. Because if we don't have a positive academic self-concept, we may not want to focus our effort on school. It doesn't feel good.

Or if we're not being able to feel success, my ability to control how much effort I put in allows me then to maybe avoid work, so I can say, well, I didn't try anyway, so of course I didn't do well, rather than putting in maximal effort and still not doing well and not getting positive feedback.

11:10  So, if we're not effectively using cognitive functions or strategies, we may not be having efficient or positive performance. We're not feeling academic success. Our academic self-concept goes down. We may have more signs and symptoms of anxiety and depression, and then our effort goes down as well, which, in turn, then results in poor grades and everyone at school and at home yelling at you about your grades. So, you can see there's a real emotional and mood component to our kids when they're having difficulties with cognitive functioning.

11:39  So, what do we do about it? Really, a good place to start is with testing, as we've talked about. But within that too, obviously, school is where the child spends a lot of time and also is learning the majority of information. When I'm working with parents who are doing homeschooling or virtual schooling, there are great opportunities as well for us to do those. So, if anyone has questions about that, this is really focused on public schools and how we can help inform private schools.

12:06  Getting help for your child in school:  When we talk about Florida schools specifically, before we move to an IEP or a 504 plan that we're going to talk about, they're going to start with what's called MTSS, multi-tiered system support. That's where we're going to start providing more individualized support in the classroom before we move to the level of a Section 504 plan or an IEP. But if we haven't had success on that MTSS plan or, a lot of times, for our kids who have more medical conditions and more complications, the school is willing to move towards a 504 or an IEP right away.

12:42  The difference between a Section 504 plan and an IEP, a Section 504 plan allows for accommodations to the educational setting and to the curriculum, not a change in the curriculum itself. So, we're accommodating how the curriculum is being presented or evaluated.

If we move to an IEP, then we're modifying. Then we're modifying the curriculum. We're modifying, bless you, how the curriculum is being presented. So, if we're doing that, then we're actually making changes to how we're giving the curriculum to our children or how they're being evaluated. That may mean a shortened exam, rather than longer time for the exam, meaning every third homework problem instead of every homework problem. More individualized support, that's what's going to occur via an IEP.

13:27  Strategies: Notes to student in advance to relieve note-taking:  So, we're looking for some very specific things that are quite basic, and we're going to talk about some more, but notes in advance with blanks, that's a great place to start. That way we're not relying on processing speed or executive functioning skills. The student is given notes in advance from the teacher. Maybe the teacher has whited out some random parts that have key terms, so they still have to maintain attention, but the onus is taken away to write down every word. They're getting all the major pieces, and then they can fill in those key terms as they're going through.

13:58  Strategies:  Give students information in different formats:  We may want to also explain information verbally, giving information verbally, and visual spatial information. So, we're relying on multiple different sensory domains to learn new information. When we ask for a student to repeat that back, what we're asking for is for them to repeat it back in their own words, not just exactly what they said, because it's going to, again, demonstrate that understanding, exactly. Preferential seating, closer to the teacher, closer to the front of the classroom. Again, those individualized supports we're going to talk a little bit more about next.

14:30  IEPs can involve speech, language and occupational therapy:  When we talk about an IEP, we can also get speech and language therapy if we need it, especially for our younger kids. Occupational therapy if we're having any sensory difficulties in the classroom or we're having difficulties with fine motor control or dexterity. We can get counseling through the schools if needed, especially if there's a bullying component. We want to make sure that the student has a safe person to go to at school.

14:53  Psychotherapy and academic coaching can help children with learning difficulties: Then outside of IEPs and schools, two areas that I'm often working with students on and our patients are psychotherapy, if we have more anxiety or depression that's occurring, or academic coaching. So, what academic coaching is ... We'll get to a few workbooks for academic coaching. But the goal is to be scaffolding and providing our patients and our children with the skills very externalized.

So, perhaps I'm handing over a full plan of how to break down that book report. We're working through it step-by-step, date-by-date, and then slowly I'm backing off from that over time. So, maybe the first three or four big projects, we're really breaking them down. We're providing reinforcers every time that student has had success with a specific part of the plan. Then we're backing off slowly so that they're internalizing that plan and finding what coping works best for them.

15:48  Talk with teachers about your child’s performance strengths and weaknesses: When we talk about school aged children, we're going to be seeking educational services first and foremost from their child's teacher. So, when we're talking about kindergarten through about sixth grade, we're going directly to the teacher to find out about academic weaknesses, behavior problems, attention, focus in the classroom, classroom participation, or any current or previous interventions, because the school isn't necessarily required to let you know if they've started doing the tiered level supports, the multi-tier system. So, the school may already be on a track heading towards an IEP or a 504, and you might not necessarily know about it, so seeing where they're at and if they are providing any individual supports.

16:33  Talk with the school counselor:  Additional contacts after the teacher. So, if you find that you're not getting anywhere with the teacher, where should you be going next? The school counselor. There should be a special education lead within the school. You should be able to ask the front office who that is and getting in touch with them. Then going to the principal if necessary. I've still had families, despite going to the teacher and going to the special education school lead and going to the principal and not had success. That's when we're going to talk about this second half of the slide here.

17:04  What to do if school is not helping child with educational challenges: What's important to remember about the public schools is they're required to provide FAPE, a free and appropriate education. That doesn't mean always that it's the optimal or perfect education. So, sometimes we're talking with families about that. We have an educational liaison at Johns Hopkins All Children’s who is a conduit between us as providers and the family with the school, to figure out where we're at, what the school's doing, and making sure the school's following specific laws.

But, also, even with those things in place, sometimes we do have schools where we're just not able to work through that ... The school is resistant for some reason, or the school doesn't have the resources, truly, to provide what that child needs. That's when we start to contact the area special education specialist. That's when we take things to the next level. We're moving beyond the school specifically and towards the district. For many states, including in Florida, there are free advocacy services available. So, if you search parent advocate and your school district, you should be able to find grant-funded educational advocates for your state that can help support you as well.

Then we move towards special education compliance. At that point, we're often getting someone external to the school to do a full evaluation and provide recommendations. If you've moved towards this, then the school has agreed not only to pay for that, but to follow the recommendations of the parent-chosen expert who does the evaluation. So, when you haven't had success here, we can move to that next level. That applies for kindergarten through 12th grade.

Again, excuse me, IDEA requires that all students have that FAPE, free and appropriate education, which may mean that the student is in the least restrictive environment. So, it may mean that they are moved away from a special education, small group resource room setting for the full day, which is what we want, into an inclusion classroom, who maybe has an additional teacher in order to support the student. But if we're going to be doing that, we want to make sure that we are still having success at that next least restrictive level.

19:17  Develop a plan with schools about which classroom environment is best, when to transition to more or less supportive classrooms: Oftentimes, I have schools who come to me and say, well, this student or this patient is doing so well. This is great news. We're going to move them out of this classroom into the inclusion classroom.

Sometimes they're doing so well because they're in the right classroom. So, it is also a matter of talking with the school, developing a plan. Potentially the solution is saying that's amazing. We're so excited that you feel that way. Can we make some small transitions, half day a week, three days a week, to see how well that student is doing in the other classroom, before we just make this huge jump that we may not be able to smoothly return back from?

So, making sure that we're being very thoughtful about setting up the planning, especially when a school says that. It makes me very nervous when a school wants to take away an IEP, take away a 504, or change a classroom setting because a student is doing so well, because sometimes they're finally doing so well because we've done everything we've needed to do.

20:13 When is the best time to have an annual IEP review? Again, when we talk about exceptional student education ... That's what it's called in Florida, but every state does vary. The categories vary slightly between states, because the federal laws dictate some of the education, but then some of it falls to the state level as well. That IEP is going to include accommodations and modifications, those special education services. In order to do that, we have to have a classification. These IEPs are typically reviewed annually. They are legally required to be reviewed annually, but sometimes I see schools also push them off.

So, this is a good question families often ask me: Is it better to have our IEP at the beginning of the school year or in the middle of the school year or at the end of the school year? I try to avoid having IEP meetings at the end of the school year, because we don't know what that next school year's going to hold. Really, at the end of the school year, all that tells me is that we did great this school year or maybe we have some things we could have done differently, but it doesn't matter because we're headed into summer.

So, unless we're getting extended school year services ... And we can talk about the specific wording that we need to use in order to get that. I prefer that we have an IEP six to eight weeks in to the new school year, because that's going to tell us how well things are going in that new school year. Also, it's going to be able to set up the remainder of the school year, hopefully, for success.

If you've been set up on a cycle for your IEP where you're at the end of the school year, we can easily adjust that by getting an evaluation. Then you present that evaluation to school, request the IEP at the beginning of the next school year, and that sets up your new date. So, we can do some things to make sure that we're getting on that cycle right into the beginning of the school year.

21:53  IEP transition plans with students: We're going to reevaluate, as we talked about, every three years. Hopefully, you'd already be tied in with a provider to be able to do that more regularly. Then there should be a transition plan. So, when we're switching, usually, from 8th grade to 9th grade, that's when we start including the student in the IEP meetings and start talking about transition planning to the high school level and start thinking about what post high school's going to look like.

So, depending on the developmental level of the student and what they're able to take in is how much time we talk about having them in that IEP meeting, and also getting their input before we have them go back to class and continue on with the educational planning. Really, by 10th, 11th, 12th grade, it's great to have the student involved and to have them start to realize where our strengths are, where our challenges might be, and how we need to move forward when we head to our next planned, post high school experience.

22:45  Section 504 plan – IEP-light:  The Section 504 plan is going to be something that's going to be the accommodations only. Sometimes I call it an IEP light, and that's not to take away from what it is, but it's to provide those accommodations.

Oftentimes, we don't need the more intensive modifications or services you get through an IEP. This is, again, reviewed annually, but depends on the state. The child must have a disability, which can include a learning disorder and attention disorder beyond the medical loan in order to get the 504. With just the medical, if there are some physical limitations or some ways that the student is limited in how they access the environment, then we can get a 504 as well.

But if we're talking about more of a cognitive pattern of strengths and challenges, we're heading towards an IEP, because oftentimes the student is going to fall under what's called other health impaired, because we have a neurocognitive deficit that's a result of the medical condition, because that disability must interfere with the child's ability to learn in the general classroom. For the most part, I would say about 90% of my patients have IEPs, if they have educational services, and about 10% have 504 plans, just because the majority of them need more intensive services, and the most comprehensive

Schools may push ... I don't know ... We can talk about this after, if anyone's been asked to move from an IEP down to a 504 plan. Again, I want to be really thoughtful when we do that, because we want to make sure that we're still putting all of the accommodations in place for success.

24:15  Any parent can ask for an evaluation for developmental education services: So, any parent can initiate the process. It depends by state how many days the school has from the date you turn in a letter in written form asking for an evaluation for developmental educational services. In Florida, this past year, we moved from school days to calendar days, so that means they have 30 calendar days, which is great for the students, rather than 30 school days, because school days count actual time we're in school. [inaudible 00:24:47] make that formal request.

They have 30 days to respond to that request, usually by asking for your consent to do the evaluation. That's the hope. Then after that, they have 60 days to actually complete the evaluation. Again, in Florida, this switched from school days to calendar days, which puts the time crunch, really, on our schools to get it done.

Again, this is going to consist of a classroom. I'm hoping that they consult with health care professionals, so your physicians, your providers, so they can get a good idea of what the medical needs are, if we need to have a health plan as part of that, if we're easily fatigued, if we need more water throughout the day, opportunity for breaks or for any times where we may need some downtime in the nurse's office.

And providing a psychoeducational or neuropsychological evaluation so that we have all of that data to give the school too. There's no reason to have some retesting of the same measure done, because we already did it. They're standardized measures. They should have the same result.

25:45  School meeting to identify student’s educational needs:  Then we're going to have a school meeting to identify if the student meets eligibility. Then if they qualify, the meetings will be held annually. Once the IEP is signed by the parent and the school, that's when it becomes binding.

So, we can make adjustments to that, and there is some differences by state in who you talk to about whether or not the IEP is binding at the time of the meeting. So, sometimes schools and parents will tell me they've been forced to sign the IEP right at that meeting, even though they wanted me to review it because a school is saying we can't do this until you sign it. That's not actually true, and so don't ever feel pushed into signing an IEP right at that time. You always have the opportunity to take it home, think about it, read through it, and return it signed. Or if an educational liaison or your provider wasn't able to attend via phone, I like to review my patients' IEPs before they're signed so I can write a letter of response. So, if there's something missing, I can write a letter asking for a little bit more.

26:49  What to look for in an IEP: So, What are we looking at? When we look at an IEP, we're going to have all the educational status and all of the cognitive functioning, and then a description of how that cognitive functioning or the disability is impacting the child's involvement and progress in school. We're going to have measurable annual goals. We want these to be attainable. We're going to have specific tactics on how we're going to meet these goals. So, for some students, it's reading, writing, mathematics specific, depending on where the areas of challenge are. For some, it might be executive functioning specific. We're going to work on organizational skills. We're going to work on note taking. We're going to work on study skills.

We may also be including an instructional setting or a placement that is more individualized or small group instruction, so that could be something like a resource room, and then any related services will be listed as well, speech, OT, PT. some schools, especially as you get to the high school level, do have additional or supplemental supports for studying and organization skills. So, they might be able to enroll your student into one of those classes.

Then we're going to make a quick switch. This is a good time to ask questions. But we'll hold off, because I think those are the rules, to the end.

Does anyone have any IEP, 504 questions, specifically about the process? Yeah.

That's perfect.

28:16  [audience] Question from audience about IEP for her child:  So, I'm right in the middle of it right now. I've got a 12-year-old who's been out all of fifth grade, so he's missed all of fifth grade. So, who I'm dealing with is the Hospital/Homebound team, kind of, sort of, which changes it a little bit. Prior to fifth grade, he had a 504. He had had an initial diagnosis in second grade, was out for half of the year, came back third and fourth grade, doing well, and then relapsed in the summer between fourth and fifth grade. So, now we're dealing with our second go-around, but missing the whole fifth-grade year.

28:57  We had just met and done a two-year assessment for post chemo for the first round, kind of mid fourth grade, late fourth grade. I saw things were starting to get funky, and so we looked at it then. At that point, we were starting to see some ... Executive function was starting to show up, so I never had an opportunity to present those results back to the school, because it happened in the summer right before he relapsed.

29:33  So, now they're saying, basically ... So, we had the last academic testing or the last batch of testing done a year ago. He's been through a lot of treatment since then, additional cancer treatment and the prep for the bone marrow transplant. They were saying no. I'm getting pushback on starting sixth grade with an IEP, that where he's at right now is let's just wait, is what they said. Let's wait for academic testing, and let's see what happens next year. Now I've got the good fortune ... I met the ESE people at the middle school he'll be attending. Because he's already been retained once before, we're pushing him through. I was surprised at that pushback, that they didn't want to jump into it. He'd just had it done, but we've got a whole nother ... But you kind of answered part of it, is it's better to way maybe till the beginning of the school year. So, do you get that a lot where you see that fight, not fight, but that pushback of going from the 504 to the IEP and academic testing versus what we did with our psychologist a year ago? Are those two separate things [crosstalk 00:31:08] five for the 504 to the IEP?

31:12  [Katzenstein]  Response to question about complicated IEP issue:  You are hitting on so many things, and-

31:16  No, it's perfect for me now talking about Hospital/Homebound, because you threw another wrench in that with the Hospital/Homebound.

31:23  School does not have to accept outside neuropsych testing for IEP:  So, two pieces. The first and easiest one for me to address, as a psychologist, as a neuropsychologist, the school does not have to accept my testing, incredibly frustrating, but not every school will accept it. Many will and do so, but even if you had had testing even recently that was academic, I wouldn't be surprised. I'd be frustrated, but not surprised that they were pushing back on accepting that testing, because they are not required by law to accept my testing.

31:50  [inaudible 00:31:50] academic is in there.

31:53  Is in there, but-

31:54  ... they don't have to accept it. So, sometimes I'm like, are you kidding me? You have a long wait. You're using up resources. I did it for you. I put a gold bow on it. Here you go. They still don't care. So, that's one component.

32:07  Hospital/Homebound education:  The second component is the Hospital/Homebound piece, because, certainly, my experience with Hospital/Homebound has been it has not met what I would want the curriculum to look like, the individual education to look like.

Sometimes I think schools know that, and so they're waiting to see where you're at before we rush in. Because, theoretically, Hospital/Homebound should have kept us moving along with the curriculum, but in reality ... And this is being recorded. Someone will take me to task for this. But, in reality, it doesn't. How could it possibly? It can't. I'm so glad you brought that up, and that's the perfect time to bring that up, because Hospital/Homebound throws an additional wrench in it.

I hear you saying we've already been retained. I want to be very thoughtful. We absolutely need an IEP. I want to be very thoughtful about what that IEP looks like, and my educational liaison would be ... I can hear her screaming at me in my head right now saying you're setting the school up for failure. But we haven't met curriculum-wise what he likely needed before, over the time of Hospital/Homebound. So, now if we head right into sixth grade with that 504, we're going to have a lot of struggle. Are you in Florida?

33:19  I'm in Tampa.

33:20  Oh, you are?

33:21  I'm so close [crosstalk 00:33:23]

33:23  I'm going to give you my email. This is perfect. My educational liaison is going to yell at me, and it's going to be perfect, because we're going to-

33:31  Yeah, that's awesome.

33:34  100%, because he won't be ready.

33:36  Right.

33:39  [That's my struggle, because Hospital/Homebound in its nature ... This is amazing. We're getting a teacher to come to the house. Sometimes I've got students ... And the idea is we're being Skyped into math every day. But so rarely is it meeting the whole curriculum.

33:55  A huge but.

33:59  Exactly. That four hours is great. I've had kids on one hour a week. I mean, how would you possibly be able ... It's crazy, right?

34:09  Functional behavior analysis (FBA): No, it's a perfect ... Oh, I'm so glad you're in Tampa. So, if you have a student who has behavior difficulties in the classroom, that's when we move towards a functional behavior analysis [FBA]. This is what's going to set up our behavior intervention plan.

So, Hospital/Homebound, I apologize. I'm remiss for not talking about that. But the FBA is something that is incredibly important when there's a dysfunctional behavior in the classroom, a behavior that's interfering with learning, because the FBA will identify the triggers for that behavior, the consequences. It will establish interventions in order to change the target behavior, and inform the positive behavior intervention plan, the PBIP, in order to make sure that we are address behavior appropriately in the classroom. This should include a behavior specialist who may be the school psychologist, or it may be someone else. That could include something like a behavior chart, some consequences. Oftentimes, we're looking at very positive reinforcers.

35:08  Interventions to help with attention problems:  If we're having difficulties with attention, sometimes an FBA is appropriate if we're trying to redirect or keep that student on-task. But what I've provided here are what some of my very common recommendations are in terms of attention weaknesses.

So, giving permission to be close to the classroom teacher, redirecting as needed. I really like to have a nonverbal cue for when the teacher recognizes a student isn't paying attention. It's not a calling out and saying, Theodore, you're not paying attention. It's just a walk by and a tap on the desk, something very simple that isn't calling that student out in front of the rest of the class. We want to use those nonverbal cues, establish eye contact, ask for repetition, use few words to explain a task.

When we do testing, sometimes I can say to families, your max is five, seven, nine words when you're giving an instruction. Beyond that, and no one's listening to you. So, keep those instructions to that number of words, requiring, again, that restatement or repetition of information.

36:11  Interventions to help with executive functioning [organizational] problems:  For executive functioning, this is a big ... I know there are a lot of words on this slide. Being proactive about note taking, breaking large tasks down into small tasks.

When you even think about something such as cleaning your room, that can be overwhelming for a child with executive functioning deficits. What does that even mean, go upstairs and clean your room, especially if your room's a disaster?

So, breaking it down. Go upstairs. I need you to put all of the dirty clothes in the hamper. Then come back and check in with me. That gives you an opportunity for praise. You're amazing. You did that already? Why don't you run back upstairs, put all of your books on your bookshelf, or put all of your toys, one step at a time, back into this container. Come back down and check in with me.

As parents, we're so used to balancing multiple things that it just comes naturally, but, oftentimes, for our kids, it's much harder for them. Even for typical development of executive functioning, I joke that car rental companies are the only ones that got it right. We continue to develop our frontal lobe until age 25, so things that come naturally for us aren't coming naturally for our teenagers, so starting to think about more opportunity for praise, one step directions at a time. How do I take a big overwhelming task and really break it down? Then helping your child use assignment notebooks, checking them every day, having someone at school check every day to make sure that the right worksheet, the right textbook is already included.

37:38  Books to help with executive functioning skills:  Here are some of my favorite books. They're actually listed in my favorite order even, so these are great opportunities for looking at executive functioning skills. The ones by Dawson and Guare almost have ... Do you guys remember your choose your own adventure books? You take a quiz in the beginning, and it directs you to the right chapter. So, you can even identify right upfront where our challenges are from a quiz the parent takes, a quiz that the child takes, and then just flip right to that chapter so you're already working in the chapter where you're going to hopefully be able to focus on, on your greatest area of need.

38:13  Assistive technology to help child organize writing assignments:  Assistive technology is something we haven't talked about yet, but something that I love. I have no conflicts of interest. Unfortunately, I have no financial gain from any of these things, but is an amazing website. They have amazing software, Draft:Builder. It's incredible, because it takes the essay that that student is writing. They outline key words. They outline their thesis. They outline their supporting details, and it propagates the essay. So, it's taken away a lot of the organizational need by really nicely breaking it down and putting it into an essay format where then the student can go in and fill in the blanks, so, again, breaking down one of those barriers for executive functioning.

CoWriter and Inspiration are nice. They're word prediction software so that we're doing more dictation.

Then a SmartPen. Has anyone heard of a SmartPen before? This is wild. There are actually multiple options now. There weren't as many options a few years ago. You can take notes on the paper. The pen is recording the lecture and remembers where you took the note on the page so that when you go back to study later, you put the pen down on the page. It cues up that part of the lecture. So, if we missed a note, if we would like to have some more reinforcement listening to the lecture again, you've got that right there on the pen, so a really nice way to study and be reminded. I know, I wish I had this when I was in college, right?

39:37  Assistive devices to help younger children with attention:  Then these are four younger kids typically, having a bumpy seat if we're distracted. Weighted vests can sometimes be helpful if we're a sensory seeker. Fidgets don't have to be fidget spinners. I realize a lot of schools have outlawed fidget spinners. Even just putting Velcro taped underneath the desk, something to feel. In the Target dollar isle, the stretch little animal favors, something that you can be messing with in your hands if that helps you maintain attention better.

I also like to put these little electric ... I'm sorry, these elastic bands ... They're not electric ... around the chair, because then kids can slip their feet in them, and they can be kicking, but they're getting the sensory feedback of having something come back across their feet if we have some little extra energy.

Using a calculator for math, using a special pencil grip if we're having a hard time gripping the pencil or strength in our hands isn't as good. Or use of a keyboard or dictation software when we're having difficulty taking notes.

40:36   Good books about IEPs:  If you are having trouble with the school, I have my card. I'll give you my email address today. Don't hesitate to reach out to me, and we can help navigate that. The Complete IEP Guide by Siegel is a fantastic book. It walks you through the special education law and gives you parenting tips.

I don't have this on here, because my educational liaison just told it to me. It is a book she recommends called From Emotions to Advocacy, and so it's a really nice way ... Is that ... Yeah ... to take away the emotions out of it and move towards advocating for your child.

Some other great books, NASP has a great publication online. I want to come back to that.

Then RTI really breaks down for you what, in Florida, we call MTSS, breaking down the tiered systems. One of the things on NASP, if we are talking about retention, NASP has a policy statement on retention. It says that retaining a child in grade purely for repetition of the information is not recommended. We only retain in grade when we make an actual accommodation modification to the curriculum. So, if we are heading down a retention path, they have some great policy statements that you can bring to your school psychologist and say this is what your professional organization is saying about this. So, oftentimes I am directing parents to do that as well.

41:59  So, thank you so much. I'm so happy to answer any questions at all. I'll give my contact information, whatever you need.

Question and Answer Session

42:05  Thank you, Dr. Katzenstein.

42:06  No problem.

42:06  Does anyone have any other questions they want to ask right now?

42:13  Extended school year discussion:  Extended school year, thank you for reminding me. So, extended school year. In order to advocate for extended school year, what you have to demonstrate is that-

To school. To the school, we have to demonstrate to the school that your student will regress in skills over that period of time. So, often we do have to be data-driven in that. If there is the assumption that an extended period of time without school will result in loss of skills, and, often, again, we need data to support that, that's how we get extended school year services.

42:45  [ audience] Is that available [inaudible 00:42:49]

42:48  [Katzenstein] I don't think it is. So, I think the better course of action is to get a tight relationship with your provider so that you can come in, get some testing, and then we can show, through testing, regression over the course of the summer or extended school breaks, because that's really the take-home. That's the hard part, right?

43:11  Oh, my gosh.

43:12  We're actually waiting for function tests to come back to see if he can even go back to school part-time for a few weeks. So, we're kind of in this weird [crosstalk 00:43:24]

43:23  Has Hospital/Homebound, for you, supplemented with Florida Virtual?

43:27  No, no. I don't know if that's because it's elementary.

43:32  There are still opportunities though. We're going to talk offline a little bit about that, because I’ll give you my direct line and my email today, because that is going to be where I think our next step is. I want my educational liaison involved so we have an extra check and balance in there too. Sure.

43:53  So, [audience] Question about executive functioning issues for internationally adopted child:  I am here in a dual role. I am a nurse practitioner in the BMT clinic, so I want information that I can share with my patients and families. But I'm also here as a mom. My daughter was adopted internationally, and she has a neuropsych evaluation that shows deficits. She is now in a small private school directed towards children with learning challenges. She's a 10th grader. Her executive functioning is next to zero.

44:19  I worry about her after high school. What kind of things do I need to be thinking about to prepare her for after high school?

44:28  Gosh. Why haven't we [inaudible 00:44:30]

44:29  We can meet for lunch.

44:32  We should. Yeah, I think we need to meet for lunch. So interestingly, international adoption poses its own set of challenges, and depending on where we're adopted from. So that aside, pre-adoption care, time in adoption, length of time of development of English language when placed in the United States are all predictors of later success.

In terms of thinking about 10th grade, we want a good idea of what's realistic for that student. So many times here, I'm hearing my patients in 10th, 11th grade say, well, I want to go to college and be a video game developer. That is the biggest one right now. So, is that realistic? Probably not.

45:13  Yeah?

45:17  You are my special case. Sometimes it's not. Sometimes we're not even really enjoying video games. It's just something that we go to.

So, the first thing is finding out with the student, what do you want to do next? What are you capable of doing next? Where are our independent living skills at? What are we getting from school?

Then how are we going to make that transition to the right university? College ... It's on my desk. I'm so sorry. There's a website ... And anyone can follow up with me, and I'll provide it ... that provides academic services for multiple universities. I want to say it's or something, that have additional accommodation and modification supports built within their curriculum already so that you can be thinking proactively about the right college or university setting to then set that up for success.

46:06  She's interested in criminal justice [crosstalk 00:46:09]

46:08  Oh, good.

46:08  ... police officer, but like the SVU. She wants to be an analyst to help behavioral assessments of these criminals. It's like, I'm not quite so sure.

46:19  Well, and I think we have the opportunity, especially when we can capitalize on especially a private school setting that's thinking about that, talking through some career counseling, doing some of those career inventories online to see where we line up. So, I love where your head is at in terms of wanting to do criminal investigation. What's something that could be similar to that? Then that provides us more of a pivot to think about a broader range of activities. We need to go to lunch.

46:48  Yeah.

46:50  Discussion about teen son’s placement in school that is not working and teen has shut down, knowing he is not doing well and is different from his peers: So, I just made a few lists of things that I'm curious about. So, what if I personally don't feel like the placement my son is in currently right now is the appropriate place for him but yet everybody's saying it is?

47:03  Is it successful? Are we having success?

47:07  No.

47:09  So, where do you live?

47:10  In Boston, Massachusetts, which we have a No Child Left Behind, and we also do the neuropsych evaluation every three years [crosstalk 00:47:17]

47:17  ... Boston Children's?

47:18  Yes, which is great. We have an advocate. He's currently [inaudible 00:47:23], so he's set up for everything under the sun. He's got the extended year, the whole nine-

47:29  ... but his motivation, his fatigue ... His disabilities are spiraling to this point, because he's also in the seventh grade.

47:37  So, he's got teenagers years coming on, and then this fatigue [inaudible 00:47:40]. He sees he's different. The workload is just so much for him. He used to hit a wall in spring. Thirty days into the school year, he hit a complete wall. I had to leave work and just get him out the door every morning. So, this whole year, not one book came home with him, not one piece of paper. He just shut down. To force him to do this stuff, I didn't know if it was going to be going another way. So, how do I reengage him, get him placed, figure out what's the next step when everybody says we have him set up but he's not doing what he's supposed to? We're not going to get anywhere.

48:21  [Katzenstein] So, three things: I want your advocate and your provider on the phone for the next meeting, because they need to be saying ... Because it sounds like we're already failing. A lot of times we need to fail in order to get more services. That's what demonstrates educational need.

48:35  [audience] I met with each of them individually, but we'll get them together.

48:38  [Katzenstein] I need all of them together in the same room, and I want the outcome walking away from that meeting to be regular check-ins. So, we're going to keep following up. We're going to make modifications to this curriculum now, because now we're shut down. So, recovery from this shutdown, especially heading into summer, can be incredibly difficult. We're getting everyone in the room. We're reconvening for IEP meetings. We're going to be doing it at regular intervals, because this is the super hard part for my families. You back off, and we lose everything-

49:10  Everything [crosstalk 00:49:12]

49:11  ... because you're doing it all. You're supporting him. You're getting him out the door. You're trying to keep track of homework.

49:16  I quit work.

49:16  You quit work, exactly. So, we've got to get everyone back in the room. That may mean also have a therapist on the outside too. So, we need to show school that we're doing everything we possibly can on our end, and we're having a significant impact.

49:29  The only thing is [inaudible 00:49:30] is not a behavioral kid. He's very kind and will do anything anybody asks. You just have to ask him.

49:39  It's fly under the radar.

49:40  He won't do anything. So, to get him to pull his weight ... And it could turn behavioral, because then he's like [inaudible 00:49:51]. He's like, "I don't want to do this," and it's like I'm just worried about pushing too many buttons. But yet I don't want to lose him either.

49:58  Well, it's the academic success cycle. We're not feeling success. We're getting more frustrated.

50:02  We're having shutdown. So, we've got to get everyone in the same room, and we need to back off. School has to back off, because we need to reintegrate back into school success with small, achievable feelings of positive academic experience.

50:14  How do I deal with the fact that every year it's reinventing the wheel? That, for the last three years, has been the most difficult challenge for me. Because I'm like, now I'm going back in to reintro in 30 days, I let the teachers figure him out. But then I'm back in October saying, okay, what have you figured out about [inaudible 00:50:34], and they really don't know him. They can't figure him out.

50:37  This question comes up so often, and I don't have a good answer. It is continuing to advocate the way that you are, continuing to go back in. I have a mom that ... I love this. She makes stickers with her child's face on them and puts them on muffins and bagels and said this is all for my son, and brings it everywhere that she goes, with the teachers, with the schools, to, number-one re-center the meeting, to remember it's about the student and not about any adversity, but also to sweeten them up. I love it, because it's that. It's going to be every year coming in with your basket of goodies, with a picture and a letter, and a reminder of what this ... Sometimes it's purely he has an IEP.

51:14  The hardest part is, among professionals and adults, I win them over all the time. They will eat out of my hand. If I ask them to do something, they'll do it for [inaudible 00:51:24]. It's just when they're there alone and he has to produce and they're not seeing him produce, they just let him not do anything at all.

51:33  That's where we've got to say to them we have to continue to push. I need you not to just let it go. When you find a good teacher, when you find a good teacher's assistant, trying to advocate for that person to follow every year. Because, I mean, we're going to be able to make baby steps in that way. I don't have a good solution for the long term.




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