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Meeting in the Middle: Parent’s Perspective of Educating a Child with Special Needs

Meeting in the Middle: Parent’s Perspective of Educating a Child with Special Needs
Cara Koscinski, OTD, MOT, OTR/L, CAS
November 15, 2022

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Editor's note: This text-based course is an edited transcript of the webinar, Meeting in the Middle: Parent's Perspective of Educating a Child with Special Needs, presented by Cara Koscinski, OTD, MOT, OTR/L, CAS.

Learning Outcomes

After this course, participants will be able to:

  • Identify common barriers between caregivers and educators when considering children with special needs.
  • Recognize at least one cause of "negative" behavior as communication in children during educational performance.
  • Choose strengths-based approaches for successful partnerships between caregivers and educators.

Introduction

Talking about how to best help children is my specific passion. I've been an occupational therapist since 1997. Many people have asked me if I was an occupational therapist first or a mom first. I was an OT first. My older son was born in 2000, and my younger one in 2002. They were both diagnosed with autism spectrum disorders within a year of each other. At that time, it was an umbrella where Asperger's was at one end of the spectrum, and pervasive developmental disorder was at the other. Then there was classic autism, which was more the kids that didn't speak very well. At that time, it was a different diagnosis than it is now. 

I also call my kids autistic children. You should know that it used to be appropriate to use person-first language, such as a child with autism or a child with so and so. But the autistic community as a whole wants us to use autism first. Not everyone agrees on that, just like everything else, so if you ask my two sons, my older son is a person with autism, but my younger son wants to be an autistic person when we describe them with their disability in mind. The best thing I can recommend is to ask the family, as it's a personal decision.

You also may hear me refer to autism a lot during this presentation because I am an internationally certified autism specialist. It doesn't mean I don't know about many other disabilities, including ADD, ADHD, etc. It means I speak, live, eat, sleep, and breathe autism. My husband also had a late-onset autism diagnosis. It's interesting that, as far as I know, I'm the only one in the family that isn't autistic. If you think about why I'm teaching this course, it's because I've been on the other side as a parent and occupational therapist. I also serve as an advocate for families that have children that are looking to get evaluated for special education services or a school district. I'm also a professor and continue to serve as a doctoral capstone mentor for universities.

Part of the responsibility of educating another human requires me personally, as an educator, to know about the law. We will talk about what that law is because when you have a 504 plan, it lasts your whole lifetime. A 504 plan is a civil rights law. When you have an Individualized Education Plan (IEP) law, it comes from a different set of funding. IEPs are different than a 504 plan. As an adult educator, I have to respect a 504 plan even in my graduate programs when I speak with, teach, and work with my students. I love writing books and have written six books. The only reason I've written all these books is because of my kids. The internet was new when they were diagnosed, so there wasn't much information. As I wrote about my interests and my boys, it allowed me to document their progression through my writing. I've written about weighted blankets, special needs in schools, and interoception. I am finishing my seventh book on executive function, where I discuss a fun new model I created called the Train Model.

Let's Chat

For this part, I want you to do some reflection. I find that when I'm teaching my students if we begin with educating and reflecting on our preconceived notions, that helps us get on the same page. That's what we'll do now. Reflect on each of the questions below and write down your answers. This can be in a chart, a bullet point list, or notes. Be 100% honest with yourself. The goal is for you to see your thinking. Sometimes when we write it down and brainstorm, throwing it all out there, we can see patterns and our beliefs.

  • What are the main sources of frustration that you have in your classroom or with the parents of students?
    • If a parent irritates you in certain ways, write it down.
  • What do you think the sources of frustration with the educational system are for parents of students with special needs?
    • What do you think the parents are frustrated with when considering the educational system as a whole? You can include yourself in here or the classroom that you teach. If you don't want to make it personal, that's fine. But I want you to think, "If I were in the other position, what would I think? What might my parents even tell me that they're frustrated with?"
    • Along the same line, jot down the things you see from the parents. For instance, if you receive an email from parents right after grades come out, saying, "You didn't let me know my student was falling behind." Then you say back, "I sent you three or four emails. I didn't hear anything back. Now here we are at the grading period, and you're frustrated."

Research shows that when families and educators join together to support children's learning and development, children are more likely to succeed in school. There has to be some buy-in from both parties. How we get that is the crux of this course. I really enjoyed putting this course together because it was amazing to look at the research. If you are a person that loves research, a list of my resources and references is available. 

Remember, every child in the classroom has a story that leads to misbehavior or defiance. You may have a student, and the previous teacher says, this child is really going to give you some trouble, or they're a bad kid. Instead of believing that, look at the child's behavior and don't say bad or good or label the child. Think about what is going on with the child. Nine times out of ten, their story won't make you angry; it will break your heart. I encourage everyone to do this because humans judge. That's part of what we do and our culture. Here's an example of this.

The 'Chair Thrower'

There is a child that I have seen in the educational system, and I'm going to call him the chair thrower. When we use labels like the chair thrower, the kid that spits, or the kid that bangs his head, there's automatically a negative connotation to it. Let's look at the story behind the chair thrower. Joshua is a four-year-old boy with poor communication. You could probably insert any of your students here, but let's just take a step back. His multiple food allergies keep him from eating snacks at school when the other kids are eating. He has a classroom aide, but she doesn't know how to help him. When he acts up, she, like many of us, just thinks, oh, please, please, please don't throw a chair. Please don't act up. We just hope and pray that nothing happens. Sure enough, though, he covers his ears and screams when the songs begin. His muscles tense, his face reddens, and he begins to yell. And guess what? Not long after that, he throws his chair and many others in the classroom. So we've got this chair thrower, but now let's look at this child from a different light.

Joshua, the chair thrower.

Figure 1. Joshua, the 'chair thrower.'

This is Joshua. I put his name in green because that's his favorite color. When you go into an IEP meeting or consider a child's needs, bring a picture or encourage the caregiver to bring a photo so that you're going into the meeting with the child in mind. When we go into a meeting with the mindset that this will be a fight or I heard parents are really mean, we need to clear our minds.

Here's the truth about Joshua, though. Joshua's mom is an occupational therapist. He had nine procedures under general anesthesia or sedation by the time he was four. That's a lot. He is only able to eat applesauce during the time you have him in your classroom. No other foods at all. Most of it goes through the feeding tube that you see him showing in his belly. He also has a submucosal cleft palate, an internal cleft palate you can't see, so air goes through his nose, and it is challenging to understand him. He has an augmentative communication device that was never used in two years of preschool. It stays in his locker because nobody knows how to use it but Joshua. Because he can't communicate with us effectively, he can't say, "Get that out of there. Get this box out so I can say something to you." Now we have a different picture of him.

Research

I got my doctorate in occupational therapy in 2019. Before that, I was not really interested in the research. But now I enjoy looking at research because it helps guide us. Approximately half of the new teachers in the United States leave the profession within the first five years due to burnout. That's a ton of people with dreams to help children who burn out. They can't keep doing it. It's too much, and we don't have support. One of the big reasons for that is that troublesome behavior is growing. As educators, we have seen this, especially after COVID. Our kids had freedom and reign around the home to do what they had to do or what they wanted to do. Then the PTSD about returning to school with germs, a mask, and all this other stuff really got to them. Sitting still and being quiet in the classroom is getting more difficult. We see a generation impacted by electronics and devices. Managing troublesome behavior in the classroom significantly contributes to teacher stress and emotional exhaustion, low self-efficacy, low enthusiasm, and job satisfaction.

Managing collaborative relationships between the team members of the educational system and parents and considering legal mandates are among the top reasons special education teachers experience burnout. The US Department of Education reports that in 2017, 46 states reported a shortage of special education teachers. That incredible shortage puts the burden on everyone else. You feel that as a system, we feel that burden as educators, principals, aides, classroom workers, and anyone in the school.

Barbara Coloroso said, "If kids come to us from strong, healthy functioning families, it makes our job easier. Our job is more important if they do not come to us from strong, healthy, functioning families." This was probably the biggest reason that I became trained in trauma-informed classrooms. So much trauma and adverse childhood experiences are compounding. If our kids aren't well nourished or taken care of, it can impact their behavior. For example, if they haven't slept all night because their parent is strung out on drugs or is an alcoholic, they may not be able to come to the classroom and stay awake.

The behavior of children is one of the biggest reasons for educator burnout. How do we manage behavior, and what are we going to do? Behavior management systems that are controlling and based on reward systems may do more harm than good. They are outdated because they don't work. They are reward systems through the traditional system of viewing learning called self-determination theory.

An example is clip charts, where a child's clip is moved up or down for certain behaviors. Another example is writing all the children's names on the class board, and a check is placed next to their name when someone throws a tantrum or meltdown. Everyone in the classroom can see that, so there's a sense of humiliation. This is a problem. Let's say you were in a faculty meeting and had to fidget or move your body, or you had something like a stomach cramp. You would have trouble using the same clip system and get clipped down too. 

Traditionally, we looked at this from intrinsic and extrinsic motivators for our students. What will motivate our kids? They don't want to see their name on the board with ten checks. What if we take away recess because that child is bad? Children inherently know that they're not doing well. So this is humiliating to them and even more detrimental to their self-esteem. We need to look at this from a strength-based approach, but utilizing a trauma-informed approach can give teachers the strategies they need to help these kids reach their full potential in the classroom. When I say trauma-informed, it's not just traumas of abuse and sex trafficking and things like that. It can be sensory processing traumas as well. For example, let's say a child sat through a fire alarm and continued to look at the alarm box the rest of the day or year, waiting for it to go off. They look at the fire alarm and fidget, which gives a sympathetic stress nervous system response, which will traumatize a student and impact their learning.

Mindfulness-based social-emotional learning programs help alleviate stress by equipping teachers with essential tools to create a trauma-informed classroom. One way to do this is to use different greetings in the classroom and ask children how they want to be greeted each day. They may choose a high five, a hug, a little dance, or something else. Think about how you can greet your students and make them feel welcome. It includes teaching the class meetings, shared responsibilities, and a process of teams. It also includes helping students make decisions impacting their executive functioning and responsibility. This evidence-based practice for our kids in the classroom helps eliminate some behavioral issues.

Individuals with Disabilities Education Improvement Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) mandates the involvement of parents in this team process. I know parents can be adversarial, and we'll talk about reasons why, but generally, the evidence and the law say that parents need to be involved. To the maximum extent possible, children with disabilities in public or private schools must be educated with non-disabled children. This is called the least restrictive environment (LRE). Full inclusion in a regular classroom is what we really want, but LRE is mandated by IDEA. Just because a child is autistic doesn't mean he should be put in another classroom. We need to include him in as much as possible with his peers.

When researching for this course, I saw that a special education teacher had taken over for another teacher who had burnout and quit. This teacher reported that none of the students ever had books that were general education curriculum related in the classroom. That is not the way it is supposed to be. The students that are special education students need the same opportunities. Another example of this is when we have a student that's nonverbal or struggles with communication, like Joshua. I'm sure you've seen the videos of kids delivering valedictorian speeches from a communication device. Nonverbal does not mean non-learning.

Winkelman versus Parma Board of Education, a lawsuit from 2007, confirmed the parents' role in the special education process and clarified that the parents' dreams, hopes, and rights for their kids also need to be included. This US Supreme Court decision from this case mandated parent involvement in the IEP process and clarified that IDEA guarantees the rights of children with disabilities and their parents. Other court cases have shown this as well. In 2018-2019, the number of students ages three to 21 who received special education services under IDEA was 7.1 million, or 14% of all students in public schools. This is a large number of kids. When my kids were diagnosed as autistic, the rate was one in 212. Now it's one in 54 boys. Your special education requirements are just compounding. If you weren't trained for this, you might also feel a lot of burnout.

Supplemental aids and services, such as augmentative communication and giving PowerPoints of your notes, should be utilized to keep children integrated into the classroom. That benefits all the kids. Fiscal deficits in school systems are another huge issue I know you're having as an educator. Educators and teaching assistants often feel unprepared for an inclusive classroom environment and lack continuing professional development. It would be great if you could give alternative seating to everyone, but where's the funding for it? Is your administrator going to support this? That's the issue. Inclusion is always considered something extra but can't be considered something extra. My son needs to survive and function in the classroom. My son has a genius IQ even though he is not very verbal and doesn't speak very well. He's capable of learning. But if we look at him as someone that needs extra, that automatically looks like a burden. 

Welcome to Holland

Let's go on the other side with the parents. One of my favorite poems is "Welcome to Holland" by Emily Perl Kingsley. This poem was given to me when my kids were diagnosed in the early 2000s by a friend who had a daughter that was deaf. It totally hit home with me, and I want to share it with you. Please take a moment to click the link and read the poem.

I hope you took the time to read "Welcome to Holland." It's very emotional and hard to read because I'm still in Holland with my boys. I love it there. I hope this poem gives you insight into what a parent is going through. Because it was written in 1987, some of the terminologies need to be updated, but it's beautiful.

Research - Parent Edition

What does Holland mean? Let's look at the parents' perspective. We are obsessed with the perfect life. If you look at social media and things that you see on the internet or TikTok and Instagram, everyone's perfect. It's tough when your life isn't perfect. None of us has a perfect life, but we are all obsessed with looking perfect. Social media pressures us. We always hear, "As long as your child's healthy." So when babies are born, people often say, "He's healthy, thank goodness." But what if my babies aren't healthy? Because they're not. They're looked at with disabilities.

Unfortunately, with autism or special needs in general, there are comorbid conditions. For example, ADHD often comes with autism, sensory processing, and GI disorders. Many people will say to me, well, at least your son doesn't have cancer. Wow. It's like, okay, thank God. Yeah, that's true. But we're also in for a long fight over different things. Mitochondrial disease is one of the things that my son has. It is deadly if you don't maintain a specific body temperature and many other things, such as nutrition. Then you have an invisible disability. You look at the child, and they look so healthy, but they may have difficulty with executive function, social skills, or other things you cannot see.

Parents often feel blame and guilt. Throughout their life, some people will always say, well, where did it come from? Your family or his family. When I was a college professor, my boss called me and asked me where my son's autism came from. As a new professor in this particular job, I thought I had to look strong and great. For her to call and ask me that was very upsetting. People are always asking. There's always guilt. There's always the burden of care. I think my kids are just perfect and wonderful how they are. I think that's why the climate is shifting to looking at this strengths-based approach.

Parents state they have experienced difficulties expressing their concerns about their child to school personnel and requesting services for their children with disabilities. That could be because they may not know what's available. They might not know of a strengths-based approach. For example, suppose you are a computer programming parent with a son diagnosed with autism or any condition. In that case, because they are not in a health profession and that is not their expertise, they may not know much about the disability.

How do they know where to begin? This is a common frustration among parents who aren't medically and educationally knowledgeable. According to the research, many parents report frustration with involvement in the IEP process and not having time to discuss their plans or concerns for their child because the meeting is educator driven. Let's talk about the parents here, specifically the fathers. When fathers say they feel heard in an IEP meeting when they're concerned about their child, they're more satisfied with the process. The research says it doesn't matter that their kid's getting more; it's just being heard that has so much value to caregivers. They are even more satisfied if we let them express their concerns.

Other concerns from parents include a lack of communication regarding the implementation of an IEP and the child's progress. They want to know how their child is doing on their goals. How do we communicate regarding all of this? Also, parents are concerned about the lack of implementation of behavior support mechanisms and the utilization of a deficit-based approach. Parents often hear something negative about their children. All they talk about is the negatives of my kids. No one really asks me what they're good at or what's their strength. I include this on every IEP I've ever been a part of. We start with a child's strengths, and we end with the strengths of a child, which makes parents and caregivers feel so much better.

Communication Barriers

Both parents and educators can possess different perspectives when it comes to communication. We have to be partners in communication. Multiple distractions tend to work against a communication partnership in the learning environment. Some of these distractions include language barriers, time management challenges on both the parents' and educators' part, past negative experiences, parents' limited educational background, and other negative factors. So many of us as parents have had to fight. We have that fighting mentality because often we've had to fight for everything for our child, including medical services and basic things. That can also cause a negative look at things.

Parent Concerns About Disability

We also know that our families and our cultures view disability very differently. Part of my doctoral project was to look at ethnicities and how they viewed disability. I found that some people outcast members of their families if they're disabled in any way, shape, or form. There's no value to these people, which I find heartbreaking. You may see that as well and wonder what the heck's happening. Why is the student always upset? Maybe they're undervalued at home. There has to be some cultural incongruency there. We must do our typical jobs and look at the cultural issues here.

My older son is great and can do lots of things. His autism is minimal and doesn't impact him as much as others. But my family is so upset that I got him labeled as autistic. It's like, why would you do that to him? My husband's side of the family doesn't talk to me much because they think we made it up. So I'm angry about that. Anger comes from parents as well. Many parents feel like getting a 'label' makes their child a target or judged in our society. Many families struggle with blame over disability and can be angry, especially in younger years. A lot of parents and even educators don't know the law. So if we're coming into this wondering who knows the law, we've got to say, let's figure it out together in partnership.

Another thing to consider is that teachers, as well as parents, often don't know the different supports that are available. There's a high ratio of students to an educator. I think you've probably seen that as well. In addition, many parents are concerned that they are not involved in decision-making for their children. Our average literacy score in the United States is 270 out of 500 puts US adults at Level 2, or below-basic literacy. The global literacy rate is 273. This means that our parents might not even be able to read or understand laws. 

A Fight Mentality

The fight mentality is something that a lot of parents come in with because they're fighting for services. Medical care is expensive, and it is difficult to get into quality clinics. I fought for my kids' medical services and to get them into doctor's appointments. Now that they're young adults, it is even more difficult because they're adults but can't advocate for themselves. As I mentioned previously, there is often fighting with family over the cause of the disability. It's a challenge for parents to get power of attorney as well. Parents fight for every milestone because children with disabilities don't reach milestones as often as typically developing children. It's important to know that there's an 80% divorce rate among parents of kids with special needs because of all this fighting and blame.

Types of Trauma

When we look at trauma, I want you, as an educator, to look at all these various types of trauma. We're not in a trauma course, so we aren't going to go too deep into this.

Types of trauma and explanations. Types of trauma include acute trauma, chronic trauma, system-induced trauma, complex trauma, and vicarious trauma.

Figure 2. Types of trauma and explanations.

Let's focus on the middle of figure 2, vicarious trauma. Vicarious trauma is one of the most significant traumas for me as an occupational therapist and you as an educator. That means we look at all these experiences and have our trauma through the experiences we witness or are a part of. One reason for burnout is that you've seen so many negative things or can't help kids that really need help. You may be traumatized by what you're witnessing or events in your own life related to teaching. That burnout is called vicarious trauma. You've got to take care of yourself. Trauma in you as an educator affects your entire body, as seen in the list of possible effects of trauma below.

  • Muscle tension
  • Chronic pain
  • Migraines
  • Inflammation
  • Acne
  • Brittle or loss of hair
  • Decreased healing of skin
  • Long-term drain
  • ANS looks for threats, and the amygdala becomes larger
  • Higher level thinking decreased with stress reactions
  • Anxiety
  • Vagus nerve
  • Increased cholesterol
  • High blood pressure
  • Increased risk of heart attack and stroke
  • Muscle spasms in the bowel
  • Diarrhea
  • Chronic malabsorption
  • Constipation
  • Bloating
  • Exacerbation of lung problems
  • Decreased oxygen
  • Hyperventilation
  • Decreased libido
  • PMS exacerbation
  • Decreased hormone production

When you're traumatized or stressed out, cortisol is a hormone produced. Cortisol and adrenaline are the hormones that drive stress. High, prolonged levels of stress can affect all of the things above. That's why we need to figure out how to make a system that works. Here's what we would need to consider. This is another time for you to take a moment and reflect.

What kind of baggage do you think kids might come in with? I hate the word baggage, but it really is that they brought this in from their life. They bring in their cumulative experiences from birth and their experiences of the day. We have our own issues that we have to deal with. We cannot change their mindset, but we can work with them to support their current state. We have control over how we respond to them.

Take a step back now and think about the way you view disability. How do you view disability? Take a moment now and write that down for yourself. What does your culture tell you about disability? What things have you been told about educating or being a special educator that is great and not so great? As you think about the answers to these questions and process your thoughts, think about your preconceived notions and things that bug you.

Then think, when that happens to me as an educator, I'm automatically going to practice taking some deep breaths, doing a mindfulness activity, closing my eyes, or relaxing my shoulders. We can change our responses to what's happening in our classroom. Remember, you have your issues, and our kids and families with problems. Understand that.

That brings me to figure 3, which shows two cups. This is a social-emotional learning and mindfulness-based research graphic. We often consider our cups to be empty or full. Instead, think that it's no longer half empty or half full. Think, do we have the ability to tolerate stress?

Joshua's cup which is nearly empty and Billy's cup which is almost full.

Figure 3. Joshua and Billy's cups.

Billy is your student, and his cup is almost full when he comes into your classroom, as seen on the right side of figure 3. In other words, he's nearly spilling out and exploding because one or two more drops of stress added to that cup will cause a full-blown meltdown. This is first thing in the morning. Maybe he didn't sleep well because of X, Y, and Z circumstances. Perhaps he has a learning disorder, and school is not fun. Maybe he has an anxiety issue. Perhaps he didn't have a healthy breakfast or any food at all in his home. So he comes to your classroom with a high cortisol level and is ready to melt down as soon as you say, "Open your books and turn to page 42." Maybe that's too many instructions, and he thinks, oh my gosh, I know how to open my book. Where did she say to turn to?

Now, look at Joshua, whose cup is on the left side of figure 3. Maybe his cup is so empty that he could pour a whole bunch of drops of stress into it because it's got a lot of room. He's well rested and fed, and his medical needs are met. He's not constipated or refluxing. Medical issues that we can't see sometimes affect us more than physical things in our environment. That is called interoception, a new sensory buzzword right now. Interoception is the way we feel inside. It's not only our emotions, but if you feel like you have diarrhea and cramps right now, you will not be able to focus. It's the same if you're hungry, thirsty, in pain, or feel that tag on the back of your shirt all day long and can't forget about it. That's agitating to you, and your cup is ready to explode. Keep all of these things in mind when looking at your students. It helps the parents and educators to consider other causes of behavior. We need to look closer to be detectives and alleviate some of our stress. 

Strengths-Based Approach

How do we do this? We use a strengths-based approach, valuing everyone equally and focusing on what our kids can do rather than avoiding what they can't do. You may have a child who is really into looking at colors. Maybe they can tell the difference between turquoise, chartreuse, light green, and dark green. Many kids I work with are into superheroes or letters and numbers. So when they're interested in these things, we can start by giving them a springboard on their interests.

Another part of the strengths-based approach is to avoid labels that usually focus on negative aspects of a child. Instead, build on a child's abilities within their proximal and potential development zones. Vygotsky's work on the zone of proximal development hinges on looking at what a child can and prefers to do. There are three concentric circles in this model. The first is the strengths, and the next one is using those strengths to work on learning new skills. Think about Billy, who really, really loves letters and numbers. You want him to do some group work with other children at a center, but you have seen him have trouble with social issues and other children. You might say, "Let's do a project over here with your friends that you can use letters and numbers on." Tailor the center time you are working with or the group activity to use the strengths of the child with whom you're working.

This is an example of scaffolding. It's important to remember that scaffolding should never be removed too quickly. You scaffold every day when you use your planner, look at your smartwatch, or look at your phone or your email. You are dependent on those things for success. Our kids are no different. We might need to give them a visual schedule, considered a strengths-based approach. For example, a visual schedule can be very helpful if you're working with a child and doing a sequence of tasks. According to research, using a visual schedule is a strengths-based approach for children with autism, but it is beneficial to all children. When teaching a child to do something with three or four steps, it's a great help. If you know a child is a visual learner, use pictures of actual items outlining the steps of that particular task.

Many of us are visual learners. Some people are not and prefer to learn through movement. They are called kinesthetic learners. You can use kinesthetics and movement to have them jump and learn the numbers if you're practicing counting. If they are older, have them skip and count as they skip. Use the child's learning style to support your educational goals. Acknowledge that sometimes things are hard. Let children know that people experience difficulties and challenges that need attention and support. If it's harder, we may need to help them build confidence before we work on a skill. Building confidence is a strengths-based approach. You don't want to learn if you feel like a failure. Identify what is taking place when learning and development are going well so that it may be reproduced, further developed, and pedagogy strengthened.

Behavior Charts

Some people use clip-down charts or strikes to manage behavior in the preschool classroom. You deliver three strikes, and you're out. This was an approach used by my kids' early educators and their developmental specialists, educators that came into our home. They delivered this three-strikes-you're-out system. My younger son got three strikes very quickly in a session. Then what was going to happen the rest of the session? We saw that he wasn't motivated. He knew he was going to get those three strikes, and even though he didn't talk much, he went and got those three strikes, so he didn't have to do anything else. We finally caught onto that.

The research regression results showed that behavior chart systems were negatively associated with students' autonomous motivation to learn. Parent-school relationships and teacher autonomy support were positively associated with autonomous motivation. We want to use children's strengths, but we also need to give them our expectations. For example, let them know there are three rules. Remind them of the rules every single time you walk in there. Hi, it's Ms. Cara working with you. Remember, today, we have no hitting, spitting, or kicking, but we can play and have fun. We're going to do this and that. Use a visual schedule to show we will do this then and the other. Remember, like cleaning a closet, behaviors get worse before they get better.

Reviewing rules often is a strengths-based approach for kids. They know what to expect. Don't you hate it when you go somewhere, and you don't know what to expect, and you're always looking around? It causes anxiety. Giving kids expectations is not being mean. It's helping them to succeed. Research tells us that negative rewards and the frequency of students that get negative feedback all the time are detrimental to the relationship between educator and parent.

When we have teacher support and the effects of the rewards for the kids aren't as big as losing recess, we know that it's not as big a deal because the kids want to succeed. They know they're not going to get three strikes. But what will you do if the student starts hitting and punching? It's up to you to deliver whatever consequence you feel is appropriate for that child. But be consistent. That's the number one question I'm asked, how do I know what to do? Consistency in your expectations will help the family. Then if you teach this to the family, they'll realize they can do it too. Review it at the beginning or the end of each day. That's going to help with your management of the classroom and the management relationship with your families.

The Behavior "Problem"

We know that behavior can be a problem when negative and bad, but consider interoception. Is your student sitting there? Are they well-fed? Are they sick that day? Maybe there's something that we need to ask or help the student to ask to advocate for their needs. You may ask if they have used or need to use the bathroom. You may ask about something else to get a judge of how they are feeling. Remember that if the child can't recognize feelings of anger, sadness, or being upset when they're working with you or in themselves, they're not going to be able to look at your face and answer, how do I feel right now? I often get comments from educators in the early intervention preschool system saying he doesn't notice my face is mad like this. If they don't know what that is in their own body, they're never going to be able to have any executive function to look at you and notice yours. Keep that in mind. That's an executive function deficit, specifically an interoceptive deficit. Also, remember that social relationships are difficult. If children are unclear about what they are expected to do, that can also cause challenging behavior. We already start the day overwhelmed when we're feeling crummy. Remember that behavior is communication. 

Adversity and Distress

Children exposed to trauma or adversity often have disrupted self-regulatory and attachment capacities that may manifest as disorganized behavior in the classroom or the home. When the child has disorganized behavior the entire time, we can suspect that the child's either purposefully or non-purposely trying to tell us something. That's when we need to step back and do what I call co-regulation. We're going to share our calm with our students. We might rock back and forth, sing a song with a beat, or do something that's grounding and keeps that student present with you at the time. You may spend your whole time with them, helping them regulate emotionally and sharing your calm. That will help develop that relationship with your student and help the caregiver succeed.

Without adequate training, teachers may fail to identify the underlying causes of disruptive behaviors, despite the students' attempts to convey distress through these behaviors. I know there's not a lot of training for educators, which is frustrating. I heard this frustration, so I was asked to share things from a parent's and educator's perspectives. We can work together as a team when we think of a tidbit like this, share it, and look at the why. I know that you care about your kids. That's why you're in this profession. For the most part, parents want the best for their kids.

Person-Centered Responses

Teachers may respond to misbehaviors using control-focused, disciplinary actions that may be triggering for adversity-affected students. This can further aggravate their symptoms of chronic stress. However, doing person-centered co-regulation can help reduce disruptive behaviors. That means we display warmth and empathy and help the student or the parents feel heard.

What Can You Do?

You need someone to hear you when you are upset, too. Don't let vicarious trauma get to you. Talk with someone. Make sure you have a support system. Think about what you can do to improve the situation. Put aside your personal beliefs because children are doing the best they can. As I mentioned previously, avoid labels.

Begin and end with the compliment sandwich method. I've always used this method because I'm not good at giving negative feedback to my students even though I know they're not doing well or not trying hard enough. I will say you're doing great at X, Y, and Z, and we need to work on this. But when we work on this, you're going to feel great. How can you do something like that? You might give them a picture of a thermometer to measure feelings, or for younger kids, you might show them a volcano and let them say, I'm here on the volcano, I'm rumbling, and I'm mad. Then you might say, what can we do to help you not explode like a volcano? We can do deep breathing or have a sensory corner. Some of these things would help us and give the compliment sandwich.

Four Principles of Transformative Family Engagement

I found four principles of transformative family engagement on the National Parent Teacher Association website.

  1. Inclusive – Considers and embraces diverse perspectives
  2. Individualized – Meets needs of each family and child
  3. Integrated – Connecting and aligning with the educational system
  4. Impactful – Empowers families to support their child's success

We need to be inclusive and embrace diversity, not looking at our kids as a burden or as if there's something extra we have to do for them. We have to say, what does this child need to do their best work? Sometimes parents are reluctant to get a label. This happens a lot with our younger kids. They come into school and may have never been in preschool before, or they've not been around other family members. We may notice a considerable delay and think, why didn't the parents see this before? It could be for some other reason, such as embarrassment or fighting. They may not even know that there's a delay.

Think of a nice way to describe the delay and explain it to us as parents so we don't feel as bad that our kid is doing poorly because our hearts break. You might say it's not about Billy not doing well in my class or with counting or writing his name. It's just that we want to help him feel more comfortable in learning. We want to support and help him feel like he's doing his best work. That shifts the mindset. It's inclusive, very individualized, integrated, and connecting and aligning with all parts of our educational system and our early intervention. It's impactful, empowering our families and each other to do successful work. Remember, inclusive, individualized, integrated, and impactful. 

Summary

To sum this up, let's look at our research findings. Research findings underscore the importance of communication for creating positive partnerships with parents. These positive partnerships with our caregivers do work. Ask the parent to bring their favorite photo of their child to the IEP or IFSP meeting and have them pass the picture to everyone in the meeting. You can have each person say one word or phrase about why they love the child. Ask the parent to tell why they chose that photo. For example, I chose this photo of my child because he's really happy here, and he's happy when he is playing with his light-up necklace.

I want you to know that Joshua, who I showed you earlier in Figure 1 and talked about, is my son. I want full disclosure here. Joshua, the chair thrower, is my son. I never knew that they weren't using his communication device. I never knew why he threw things and was almost kicked out of preschool. When I got an educator who communicated with me, it all changed because I could help. I felt terrible because here I am, this world-renowned OT and a mom. I felt like now I knew and I could help everyone. We helped each other. At any rate, he's graduated high school and is 19 now.

In conclusion, we know that the main causes of conflict between parents and educators are differences in values, different perceptions of the same student, and not truly listening to each other. Conflict also occurs when we accuse each other or don't have a common goal. When you get that nasty, angry email from the parents, maybe say, okay, I want to respond this way. I want to say, didn't you know I sent this to you four times before? Write that down on a piece of paper, scrunch it up, and throw it away. Then give your real response. But get those emotions out if you need to because we all need to vent. But don't vent directly to each other. Remember, we have a common goal of being calm. Communication and compromise will always win. Always reiterate that as an educator, you are here to help.

Here are some key things to do to help build partnerships.

  • Engage together in meaningful dialogue
  • Show mutual respect
  • Actively listen to one another
  • Collaborate on issues that affect student learning
  • Empathize with one another
  • Open yourselves to learning from each other
  • Involve students as responsible collaborators in their own learning

Engage together in meaningful dialogue showing mutual respect and actively listening. This means you don't cross your arms or legs; you lean into each other and focus on the time together. Open yourselves to learning. Parents are amazing at looking at what their kids need, and you are amazing at educating and looking to build strengths. So team up, and that's what's going to happen. Don't forget the student. If children can speak or communicate with you, involving them can be fun. Then maybe we'll know their perspective too. It's important to let parents know you're accessible and involve them in problem-solving. You don't have to know all the answers to fix something. No one knows all the answers, and we don't expect parents to have all the answers. All we expect you to say as educators is, I don't know that, but I will try to find it out. Work together. Use apps to help energize the parent-teacher relationship. This article provides information on several apps that can be helpful with this.

Resource Links

  • PocketOT
    • www.PocketOT.com
  • Every Moment Counts
    • www.everymomentcounts.org
  • Parent-Teacher Partnership Model
    • https://www.parentcenterhub.org/ohio-parent-teacher-partnership-model/
  • Parent Center Hub  
    • www.parentcenterhub.org
  • National PTA
    • https://www.pta.org/the-center-for-family-engagement
  • Barbara Coloroso
    • https://www.kidsareworthit.com/
  • Why Autonomy Matters
    • https://www.youtube.com/watch?v=hol2JumnTx4

References

See handout.

Citation

Koscinski, C. (2022). Meeting in the middle: Parent's perspective of educating a child with special needs. Continued.com - Early Childhood Education, Article 23823. Available at www.continued.com/early-childhood-education

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cara koscinski

Cara Koscinski, OTD, MOT, OTR/L, CAS

Cara Koscinski, OTD, MOT, OTR/L, CAS, has been an occupational therapist for over 25 years. Dr. Koscinski recently earned her certification as an autism specialist (CAS). Her interests as a pediatric occupational therapist include trauma-informed care, behavior, interoception, executive function, and autism. As an educational speaker, Cara incorporates her expertise as a mother of two children with autism. She has published six books and has over 110,000 followers on her blog and social media channels. She is a former professor at the University of St. Augustine’s MOT and OTD programs and currently mentors OTD students across the US during their capstone projects. Her website at www.PocketOT.com contains products designed to support the busy occupational therapist, is AOTA approved for delivering PDUs and helps caregivers learn advocacy and use strengths-based approaches for their children.



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