Riding Bareback
The teacher was the same but the horses much younger and faster. Upon our arrival, the teacher L put my daughter and the horse, Shonie, in a pen to get to know each other. Now until this moment, Sabrina had been riding with a teacher and a side-walker who had the horse on a lead rope. And the horses were very old and very slow. This was new.
Sabrina petted the horse and then L had Sabrina put on the halter and lead her around the pen by herself. Again the contrast of barely being allowed to hold the end of the rope while an adult held the main rope at last week's lesson was amazing.
Together they put on reins and a pad but no saddle or stirrups. Sabrina got on (mostly on her own) and started riding this sweet mare around a small arena. She shifted and slipped and steered. She rode this pony like she had been riding all her life. No fear, no worries, she just took the reins and rode. She was in heaven. I was a bit in shock.
In that moment, I had to discard my beliefs about her riding a horse. This was the real thing-wild, big and powerful and in that moment I saw it in both Sabrina and her horse. The horse tried to do whatever Sabrina asked. Sabrina tried to figure out how to ask her to do what she wanted.
As I witnessed my daughter, I had to form a new picture of who she is and what she can do. In that moment, I saw a girl who loves horses and is completely capable of riding them. As she bounced on Shonie's back, she was not her disabilities; she was a girl learning to ride a horse.
The next week, she learned to put on a saddle and started trotting. She told us she wants to learn to jump and canter. And now I know she will. Sabrina is an equestrian.
Now it's my turn to learn how not to cringe when she falls off or put limits on her goals. Sabrina rides bareback, whether I can or not. This belongs to her.
Fiction or Fact: Lottery
The hero of this refreshing novel is a man named Perry L Crandall. He tells us the story of his life. He sets a tone from the first page when he tells readers the most important thing, “I am thirty-two years old and I am not retarded. You have to have an IQ number less than 75 to be retarded. I read that in Reader’s Digest. I am not. Mine is 76.”
The next thing he wants you to know is that he won twelve million dollars in the Washington State Lottery. First-time novelist Wood has crafted a defining story. She has taken a character that at first does not seem to be someone we know. After all, how many of us really know people with cognitive disabilities? But she masterfully finds the commonality in this likable character. Perry loves, longs, and laughs. He does best with routine and predictability but he manages to navigate his way though his unusual life and circumstances by listening to his heart. His Grams, who dies early in the book, taught him many things, including how to save and spend, literally and figuratively. She tells him that’s “it’s very important to think of your future, because at some point it becomes your past.”
Her words of wisdom foreshadow the conflicts that come when she dies and when he wins the lottery. She knows he is suggestible (one of his words of the day) and they make a list of whom he can trust. His family is not on the list. But his friend Keith is and so is Gary, the owner of Holsted’s Marine Supply where Perry has worked since his grandfather taught him about boats. When his beloved Gram dies, his half-brothers sell the house they shared from under him and kick him out with $200. It is hard to read when you start to personalize through Perry what happens to adults with disabilities all over the country. Wood makes us uncomfortable but still wanting to discover what will happen next.
This could have been a bitter book, about how family and friends can be spiteful, prejudiced and horrid. But it’s not. Perry does not become like them. He maintains his wonderful sense of self throughout the book. He doesn’t want revenge or to keep all the money for himself. He wants to be with his friends, he wants to be in love, he wants to be part of the store’s success. He wants a good life and he has one.
It’s rare to see the main character be an adult with disabilities. It’s a fine line between making them someone we pity and someone who inspires us to be ourselves. It might challenge some readers to look at their own negative beliefs, name-calling, and other derogatory remarks towards people who may (or may not) be mentally retarded. Perry shows us that even our assumptions that all people with cognitive challenges are the same needs to be challenged. Perry is clearly a well-defined individual and deserves our full attention. As you can imagine, winning the lottery brings out the hunger in others for his money and he has to learn to manage this new role. His true friends, Keith, Gary and Cherry (the young woman he loves but who loves Keith) help him as they expand their own perspectives about Perry. For instance, without his money, would Gary consider having someone like Perry become an active business partner?
You’ll have to read Lottery to find out what choices Perry makes and just what the L. in his name stands for. It’s worth the time.
Is it Fun, Meaningful, and Sustainable?
Is it fun? One thing I’ve learned from living and working with so many people who have ADHD, is that many of them like to keep things lively. It’s what gets my teenaged son into trouble at school and at home. While I am trying to teach him to find acceptable ways to make class time more interesting, he does bring a certain spark to the room. As an adult, fun means being present in a positive, enthusiastic way. At times, it could mean silly, or goofy, or playful. But it’s much deeper than that. Ask if whatever you are doing is fun by asking;
- Is it engaging?
- Does it make you feel alive?
- Are your senses heightened?
- Do you lose track of time and worry?
Then it’s fun.
Is it meaningful? This is the heart of what is important.. Everyone, whatever their abilities, has a fundamental need to matter. Until we have a sense of belonging, we have diffulty learning and colloaborating. If we can’t learn or work together, then we feel badly about ourselves. If we feel badly about ourselves, we don’t feel worthy as people and a negative cycle is created. Belonging gives us a place to feel meaningful. When we belong, we are contributing to the group. Our involvement matters. We matter.Is it sustainable? In order to keep doing the work it takes to be present and have fun, to belong and be meaningful, our efforts have to be sustainable. Great ideas are important but without sustainable implementation, it won’t work. It’s sort of like New Years’ Resolutions, if we try to do too much, such as start a new diet and start exercising, we are usually asking for too much and can’t sustain the effort it takes to change. Start with what is sustainable.
When I was the PTA president at my kids’ school, I used these three themes to direct all my decisions. I wanted our monthly meetings to be worth attending. So I set up a structure to run the meetings in that always included time for every voice to be heard (meaningful), time to pause and be present often in a whimsical way (fun) and each meeting followed the same basic format (sustainable). The school still uses that structure.
I also ask these questions when I talk to parents about their child’s school experience. I encourage them to reframe their IEP goals and meetings around the question of if what we are doing/offering engagement, connection and continuity?
- Does the student feel they belong?
- Do they engage in meaningful activities throughout their day?
- Is fun defined by being pulled out of class for a special ed field trip or by doing experiments in science lab?
- Can the student sustain the effort to participare and learn?
- Can the adults working with the student sustain the effort to provide meaningful participation and engaging learning?
- Are the goals and objectives consistent with a long-term vision of community involvment?
- Do those involved feel heard, valued, and respected?
How do you ensure your team's efforts are fun, meaningful, and sustainable?
Roots of Conflict
It happens on the other side of the table as well. Teachers and specialists working with our kids often feel that the parents don’t see all that they are doing on behalf of the student. Or how much progress she or he has made. They feel unseen too. Addressing this gap requires a face-to-face meeting but meetings aren’t usually called just to help the IEP team “see’ the child. We usually have to have some kind of reason and that’s when the focus goes on the IEP and what the team is or isn’t doing to implement it. The downside of this as the reason to meet means that there is a focus on the negative. It puts people in the defensive position even before the meeting starts. One way to help prevent this is to share a parent report before the meeting. (see previous blog)
In this way, the IEP becomes a tool. I’ve noticed that when there is agreement and openness about who a student is, what the goals and expected outcomes are, that the IEP itself becomes secondary. It’s just the details. When a team really gets a child, they usually want to support that child and they are motivated to meet their needs, however they are written in the IEP. So to me, the most important thing a team can do is make sure that every member has the opportunity to share what they know about the student and what they see as the student’s strengths, gifts and contributions. Everyone needs to be heard, even if their perspective is different from the parents.
Another source of conflict is the discrepancy between what a team is doing and what they could be doing. Parents call me and complain that the team isn’t doing this or that. They might say that the team isn’t doing things right. And they may be right. But that doesn’t mean that the team isn’t doing their jobs. Parents want the best for their child even when they don’t really now what best is. Schools are bound to provide access to the curriculum but no where in the law does it say they have to do what is best. How can we accept that? No wonder parents feel that school teams have low expectations. And why teams feel that parents expect too much from them. When people are stuck here, it’s even harder to see the child.
How do you create a meaningful meeting?
1. Work with the facilitator of the meeting to ensure there is time for everyone to talk, starting with the parents. Share what you expect school to be like for your child and what the most important parts are to you.
2. Look for something positive to say about the professionals working with your child. Share it with the person.
3. Listen without comment or interruption when the professionals have their turn. Stay focused on the child.
The more we all practice listening to everyone a the table ,including listening to what’s hard or challenging, the more likely we can find common ground in serving the needs of our children.
Conflict: What Are We Missing? by Tracy Gershwin Mueller, Ph.D.
- from Carl Jung, Swiss Psychiatrist
The Problem
Perhaps one of the most overlooked expenses in the field of special education is litigation. The numbers of due process hearings that are taking place across the United States are continuing to increase on an annual basis. In fact, it was estimated that over 14,000 due process hearings would take place during the 2006-2007 academic year. These statistics are just now being analyzed and could be as much or more than the predicted numbers. The costs accrued through a hearing could be as much as $50,000 per hearing, with some cases that reach Federal appeals court costing as much as $60,000 to $100,000. School districts across the U.S. report spending over $90 million a year in conflict resolution. This is a great cost considering all of the drastic budget cuts education is continuing to experience through general and special education.
What do these numbers mean for us? Simply put, we are spending more money to have people resolve our own conflict then to just address it ourselves. External activities, funds, and energy are being used unnecessarily. The reality is that the majority of the conflict can and should be addressed internally. After all, how can a district and families learn to resolve disputed issues if they are not given the opportunity themselves?
The irony here is that in the field of special education we promote the concept of self-regulation and self-management. We educate our students with the goal that they can work through their social, academic, and behavioral needs internally, rather than externally. Yet when it comes to the adults who work with these students it is far more accessible and accepted to become so entwined within a conflict that we go straight to a hearing and ask a hearing officer to resolve the issue. The end result is simple. Districts and parents are forced to experience the emotional rollercoaster of a hearing, high legal fees, and a relationship that will most likely be disjointed for good. One issue that most people do not consider at this conjuncture is the relationship between those families and districts that will still be required until the child turns twenty-one years of age. The next questions left before the team is, "What happens if another issue of disagreement arises?" If this is the case, the team has clearly not learned or grown through the experience of working through conflict together. Thus hearing number two is not too far off the horizon.
One important issue to note is that due process hearings should not be viewed as meaningless and inappropriate. On the contrary, due process provisions were written into the law to provide parents with some legal options should their child's Free and Appropriate Public Education (FAPE) be compromised. There is no argument that due process should remain an option for families and, when appropriate, can be very beneficial to the educational team. The issue that should be considered is, "When is a due process hearing appropriate?" Further, "Are we overly using this legal right when in reality conflict could otherwise be resolved between parties?"
There is no question that conflict is uncomfortable. Depending on our own backgrounds, experiences, beliefs, and practices we all address conflict with our own styles. Many people alike this response as one where it is either "fight or flight." Thus when an option such as due process is available, there is a simple "out" for educational teams to exercise. This concern is heightened by the amount of revenue we are spending on our responses to conflict.
Potential Solution
As a teacher educator who works in a highly respected university that prepares students to become special educators, this issue is magnified when I look at the status of most special education licensure programs across the U.S. With the IDEA (2004) and No Child Left Behind (2001) mandates, universities are pressured to prepare highly qualified teachers. Teacher educators are also well aware of the mass shortage of special educators across the county. The final compounding variable is the pressure to prepare and graduate special educators at an increasing rate. The result of these two collisions is universities pressured to gain student enrollment that can complete a program with a minimum number of credits at a quick rate so that they can serve our much-neglected field.
The shortened programs combined with highly qualified educators results in classes that are focused on standards with regard to teacher pedagogy, and very little focus on teacher collaboration, specifically alternative dispute resolution strategies. Thus, teachers are not being prepared to deal with conflict. The programs focus more on the students they teach with little focus on all of the educational members they are required to work with.
One clear solution to this issue is to first acknowledge that conflict is inevitable and needs to be addressed. Similar to the proactive behavior management techniques we promote through the Positive Behavior Support (PBS) movement, we need to prepare our educators for conflict. Teachers can learn strategies for communicating effectively, problem solving, and finding mutual solutions. Models from other disciplines, such as the medical practice and business industries should be considered and applied to our own system so that we can create options to hearings rather than only mediation or litigation. The end result will be well prepared educators who can collaborate and problem solve with families. Due process should and will still be available, when appropriate.
For more information on Conflict and appropriate dispute resolution, please visit the CADRE website
Parent Tip #1 Preparing for an IEP
Tip #1: Write a 'parent report'
All the other professionals will write a report. Your voice should be included in your child’s file. I believe that every parent should present their report just like all the other professionals do and take time to do a thorough, meaningful assessment of their child through their own eyes. I have found that the most effective presentation is one page. Put your child’s name and birthday on the top along with the parent’s names and the date. Open with a short paragraph giving an overall picture of your child. Then make a bulleted list in four categories - 1) Strengths, 2) Interests, 3) Needs, and 4) Friendships.
Even though I have worked with the same team for several years, I always provide a parent report at every annual or triennial IEP meeting. My daughter changes and I want the adults working with her to remember that and use my information to adjust their teaching strategies to support her strengths. They may know she likes to sing but I can tell them that she is learning the songs from Annie and learning about orphans and adoption. When they do a social study unit on families, she has awareness of different kinds of families.
When we met for Sabrina’s triennial in second grade, her assessments showed she was over a year behind academically. We weren’t surprised but it did make us consider every accommodation available to help support her. I used my parent report to remind them of her strengths and interests. I wanted to encourage them to use some new accommodations that drew from her interests to help learn to read and write.
This is what her report looked like. To protect other's privacy, some areas have been omitted.
Parent Report, 2006
Sabrina is a good friend, affectionate daughter, caring sister, and engaged learner. She is as eager to learn to read as she is to plan an American Girl sleepover with her best friends. She has a natural social grace and is working on standing up for herself. Every day she wakes up cheerful, cares for her guinea pig, sings, reads, draws, and loves her family and friends.
Strengths:
Social connections to peers
Loyal to friends
Low anxiety
Comfortable with physical contact and games
Singing and music
Enthusiastic learner
Willing to try, even when it's difficult
Transitions easily
Follows classroom routines and rules
Interests:
American Girls
Ballet
Horse-back riding
Sleepovers
Parties
Playdates
Singing
Visiting family in California
Traveling
Needs
Communication strategies for all mediums - verbal, reading, writing
Generalizing concepts across mediums and environments
More time to process when response is required
Options for helping others understand her speech
Increase expectations from staff and self
Opportunities to be a leader
Talk to her about strategies, tools, and her supports
Needs lots of repitition to grasp concepts, master skills,or anticipate evetns
Self-advocacy
Educating Parents About the IEP process by Tracy Mueller
I recently read a news story titled Modeling the Parent-Teacher Strategies of Education By Laurie McLaughlin(link below) which left me wondering one major question: How Can Educators actively involve parents in the IEP process? The word active is used in the very literal and verb tense. It should be an action, that is parents are providing information, asking questions, sharing in a team dialogue about the child’s needs, and truly part of the IEP team, in keeping with the spirit of IDEA.
It should be no surprise that many parents do not actively participate in IEP meetings. Most parents are invited to an hour long meeting with educators taking turns to read their reports or share their interpretations of the students’ progress. Then at the end, everyone signs on the signature page; however, the parents are most often provided the signature page first. The news story is interesting because it talks about one teacher’s dedication to actively including the parents, yet I see no strategies so I am left only to my own experiences.
My research and practice has afforded me the opportunity to get to know many families. I have worked with active families and then some who did not yet know how to find their voice for inclusion with the team. All of these families have given me insights and ideas. The most essential strategy I have heard from families is to help parents understand their role in the IEP team. I think many families will tell you that before they became involved, they didn’t know they could, or what their role was. Parents can become empowered by simply educating them about their rights in words they are familiar with, ensuring that all of the special education jargon we use in the field is eliminated. Further, informing parents that their involvement can make a significant impact on their child’s academic, behavioral, and social growth also makes the statement of their value as a team member and the urgency for their own involvement.
We typically hear from many educators about the time constraints and resource constraints they encounter. Yet few of these professionals realize the amount of time and energy they could save by simply educating parents about their role in the team. Working together and collaborating helps all of our students grow and therefore saves professionals the time to provide the specialized instruction they are trained to do.
Educating parents can take many forms and could be offered with a continuum of supports similar to the services we offer our students. Teachers can educate parents through newsletters, email list serves, weekly meetings, parent nights, one-to-one sessions with parents, phone calls, back and forth notebooks, etc. It is won’t take much other than to explain to parents how they can be involved and then most importantly, the action of the professionals to welcome those parents into the IEP meeting and to invite them to be active members.
This is only the initial step to active parent involvement; however, I think this is the most essential first step. How can we get into actual strategies when parents may not even know or understand the meaning behind their inclusion of these strategies? Understanding where we “fit” within a group of people may seem easy yet it is clearly no small feat if we are 32 years past the induction of IDEA and parents are still separated from the team. So… what are the next steps? Where can we go other than to start with education for everyone, including parents and professionals.
To locate the article that inspired this Blog entry, please go to the website below: www.neatoday.org
Resiliency In Action
I attended a presentation this week with national educator, Nan Henderson. She talked about her work in helping people, esp. children and teens, to lean how to unlock the power of resiliency. Her book and company, Resiliency in Action, offers a positive, strengths based way to look at youth.
What I liked about Nan’s approach is that it asks us to put our attention on all the things that are going right for someone. As someone who parents a teen who is very challenging to live with, I know how easy it is to want to correct, harangue, and fault my son. But who can live like that? I am already doing much of what Nan suggests- I try to focus on what he does well and what his strengths are; I give him specific feedback about how I see his strengths (whether he can receive it or not), and I am not giving up!
Nan’s extensive research shows that one person, just one person, can make a huge difference in another person’s life. That person does not need a degree, a title, or an education. That person needs to communicate what Nan calls the ‘resiliency attitude’, which is the belief and attitude that what is right with the child or youth is more powerful than anything wrong.
Though this presentation was for parents worrying about their teens engaging in high-risk behavior, I could see the connection to our sons and daughters who have special needs. The special education system looks at the deficits in our children and than focuses on how to treat, cure, manage, and cope with them. I want to stop here and reiterate that I think the system is set up to see what’s wrong. I think the people who work in the system- the teachers, therapists and other professionals- look for what is positive, and right and good about the students they work with. We have to be careful not to let our thinking become that of the system. We have to keep our humanity as we navigate the system of special education.
The idea of seeing what is right as the most important perspective can be applied to kids, classrooms and even systems. I often ask the parents I work with to talk to their student, esp. if it’s a middle of high school student, about what works for him or her at school. What specifically makes science class manageable while math is not? What are the environmental factors? What are the social factors? What are the specific ways the teacher works with the student? Then I ask how can we apply one or two of those factors of success to social studies? How do we take what is working for a student, acknowledge that to the student, and then connect their strengths to their weaknesses?
Let me give you a personal example using my teen. As you might suspect his room is a mess, he leaves a trail of detritus in every room he touches, however briefly. Getting him to do chores is not fun and though the chores might get done, they are never done well. I know all this about him and our family also holds the value that everyone participates in the housework. I thought about what he likes to do and is good at-- he loves cooking. He likes to make custom marinates for steaks. He loves to chop onions and garlic. He even asked for a new knife and cutting board for his birthday. So his new chore is to cook for our family of five two to three nights a week. He has to plan, shop, and prepare the meal. Vegetables have to be abundantly present. No, he isn’t good at cleaning up but he is taking the steps to learn that he now puts away all ingredients and leftovers, and piles the dishes in the sink. But I am willing to do some of the cleaning in exchange for not cooking and for having him doing something that is meaningful for our family.
I could go on with the concepts that Nan presented. I could talk about how engaging our youth in meaningful participation is one of the key factors to a happy, successful life. But I’ll stop for now, give you her website link, www.resiliency.com, and ask you to share how focusing on what is right with our youth has informed and transformed your work.
The Power of a Picture Book
“This book gives me hope,” said Diane Mosley, mother of Spencer, a boy with significant disabilities similar to Mikayla. “It shows in simple terms that it is possible to welcome a student who uses a wheelchair, can not speak, and has medical issues. These kids welcome Mikayla.” But they didn’t always welcome Spencer. She fought for meaningful inclusion and encountered many more obstacles than welcome mats. Adults put up the barriers by their own beliefs (he couldn’t learn so why should he be here), their inexperience (how do you involve a student who can only communicate with a switch, and even that is not consistent?) and their own lack of creativity for providing modifications and accommodations. With tears in her eyes, Diane said, “this book says so eloquently what our dream was for our son.”
While the dream didn’t come true for Spencer, who died in 2006, it is real for Mikalya. Mikayla’s third grade classmates at Lower Nazareth Elementary School in Nazareth, Pennsylvania wrote and illustrated Our Friend Mikayla. It is an honest account of how a group of nine-year-olds discovered that at our core, we are more alike than different. On the first page they write, “She is in a wheelchair and has lots of disabilities. But that does not mean we cannot be friends. ”
This is a rare book. Rare because it comes from other children; not from adults telling them how to feel or act. It addresses the reality of more students with significant needs being included in regular classrooms. They acknowledge that when Mikayla first came to their class, they were afraid of her. They write, “we felt scared because we though Mikayla was different and not like a ‘normal’ kid.” But just like the rest of us have to learn how to interact with people with different ways of communicating and being in the world, they learned that there was nothing to be scared of. They learned this because wise and brave adults gave them information, opportunities, and held the expectation that they would figure it out. They did. They learned she was in a wheelchair because she had brain damage. They learned she like bright colors, American Idol, and shopping for clothes. They learned she can skate at Rollerway using her wheelchair.
“People were way too protective of Spencer,” Diane explains.” So he missed out on lots of opportunities. In this book, the kids figured out that she could be the pitcher in kickball by pushing the ball down a ball ramp. I would have loved to see that for Spencer.” People with significant disabilities are both easier and more difficult to include in regular classroom. Easier because it’s obvious they have limitations so others know they need help with most tasks. More difficult because it requires effort to find out who the person is, what they like, what they can do, and what is most helpful to them. Our Friend Mikayla is a wonderful resource for teachers. Reading about someone else who has a disability is a safe way to start a conversation.
This picture book, in its refreshingly matter-of-fact approach, gives readers a way to talk about fears, obstacles, similarities, and disabilities. How else can we converse about meaningful inclusion for those most impacted by their disabilities?
Our Friend Mikayla
Written and Illustrated by Mikayla’s Third-Grade Classmates The Bubel/Aiken Foundation, 2006
www.bubelaiken.org
Welcome to Voices of Inclusion
Welcome and thank you for coming to visit with us. Allow me to introduce the two main authors of this blog. Tracy Mueller is mom to two young girls and an assistant professor in the department of special education at the University of Northern Colorado (UNC). Tracy completed her doctorate at the University of California at Santa Barbara where she studied strategies to build and foster the parent-professional partnership in relation to special education. Anna Stewart is mother to three kids, two with special needs. She is the parent liaison to special education in the Boulder Valley School District and the author of over 300 articles, reviews, essays, and a book, Mother Blessings: Honoring Women Becoming Mothers.
Together, they have presented at national conferences, collaborated on a series of on-line teaching modules for UNC, and are working on a book about parent and professional collaboration.
The blog is named Voices of Inclusion to bring together all the people participating in special education. This includes but is not limited to: children; siblings; parents; family members; teachers; therapists; medical providers; researchers; educators; classmates; and friends.
In our work, we have witnessed and been involved in many different kinds of interactions among people in the world of special education. Most of these interactions have been positive, however, we have also seen what can happen when collaboration takes a wrong turn.
We believe in the power of respectful collaboration. Collaboration is not a one-time event that might happen at an IEP meeting. It is an ongoing process requiring honest communication, evidence-based strategies and an open mind. Within the structure, parents and teachers are empowered to think outside of the box.
We want to challenge our readers and our contributors to dream. We want to discuss, consider, and debate. And in order to do so, we need to hear from everyone. It is important to note that we are not using this platform to pick on people, complain, or harass. We are here to encourage members of the community to reflect and share with the ultimate goal of expression – we are all voices of inclusion.
In future entries, we will open the discussion between parents and professionals by asking questions and posing our thoughts. Tracy and Anna have talked for hours about issues such as including students with significant behavior issues, teachers’ thoughts on the lack of educational resources, and parent empowerment strategies.
We encourage you to participate by sharing your experiences, stories, beliefs, strengths, and challenges. We look forward to hearing from you!