Reimagining Quality of Life for Adults with Significant Needs: Finding Holland

Since the tender age of ten, I have been contemplating what will happen to my brother, CJ, when my parents pass away. When I was four, CJ was diagnosed with Autism. And, similarly to how Emily Perl Kingsley felt in her poem, Welcome to Holland, my family dynamic was altered for the better. While some moments were frustrating (aka when he would jump out of the moving car, mimic crying babies, or climb the tallest of trees), when I took a step back I realized that there were times when I, too, did things that were frustrating (aka my middle school years – sorry mom). And from this new perspective, I began to recognize CJ’s many strengths, as he composed beautiful art and memorized the producers of every Disney movie. While living with CJ has fueled my passion for creating my non-profit housing program, “Finding Holland,” I am continuously driven to advocate for equitable housing for all individuals across the spectrum of Autism as well as moderate to severe disabilities.

The Problem

What resources are available when it comes providing long term supports for adults with special needs? While there are transitional and day programs out there, there is little attention focused on future housing arrangements and equitable employment opportunities that are suitable for individuals with moderate to severe Autism. These individuals have numerous strengths and abilities, and they deserve a dignified quality of life. Unfortunately, housing facilities that uplift their abilities while meeting their individualized needs are not readily available throughout the U.S.

My Vision

My house, “Finding Holland,” will work to build a strong community among its members with a state-of-the-art,  integrative wellness center and residential facility for people of ALL abilities. There will be a vision, positive atmosphere, and leadership team focused on supporting people with Autism and creating an “enviable life” with them. A staff of life coaches, occupational therapists, speech therapists, physical therapists, special educators, and therapeutic recreational specialists will provide accommodations to each individual in order for them to participate as independently as possible. Finding Holland will allow individuals to set personal goals, establish daily routines, and discover a “work-life” balance that supports individuals in living their fullest life.

In the realm of education, we have made progress in providing students with equitable access to deeper learning. About half a century ago, most individuals with moderate to severe special needs were institutionalized throughout their adult lives once they “aged out” of the school system. Families, guardians, and professionals call this “falling off the cliff.” However, in my opinion, we have not made sufficient progress in providing equitable housing and work resources following school. In my classroom and in the home I create, I am working to teach individuals how to take care of themselves, express themselves, and develop their communication, in order to have a voice in determining their own quality of life.

The spectrum of Autism is wide and not fully understood, and therefore, there aren’t a lot of resources available for this specific population post high-school. Yes, there are day recreational programs and work programs, but absolutely nothing considered to be a standard, “traditional job.”  Additionally, in terms of residential living, the majority of these programs are private, which requires significant financial resources. Following the transition from high school, the amount of supports available are limited and accommodations within work and residential life often don’t meet the specific needs of the individual. I’ve only seen programs that provide factory work, work programs, and government funded programs with an emphasis on working. We need to mix that up and provide social recreation, interaction, and a work-life balance.

Yes, maybe, right now this is all just a vision, but we need to advocate, collaborate, and use our voices to create equitable housing access for people of all abilities! Together, we will find Holland.

Katie Miles works as a Paraprofessional at Barbara C. Jordan Elementary in The School District of University City. She graduated from Saint Louis University in December 2017 with a Bachelor of Arts in Elementary and Special Education.

From Punishing to Teaching The Behavior We Want To See

Ahh, “behavior management.”

Research shows that “behavior management” is one of the top challenges for teachers, one of the factors attributed to teacher attrition, and a top priority for school administrators.  But what does it mean, to manage behaviors?

It is a teacher’s job to gain the cooperation of his/her learners.  Think about those words . . . gain the cooperation of . . . What are our expectations of a well-managed classroom?  Cooperative learners?  Engaged learners?  Compliant children?

Many of the systems we find in classrooms (i.e., clip charts, color charts, marble jars) are contingent upon compliance.  But compliance with what?  We often inundate children with vague classroom rules (what does it really mean to “be respectful”?) without clear operationalized expectations for, say, getting clipped up or clipped down.  What is the tangible real difference in behavior between “good job” and “great job” on a clip chart?  Ask any kid.  They’ll tell you it’s the teacher’s call, and it usually depends on the teacher’s mood.

And that’s moving UP on the chart.  Let’s talk about moving down.

Commonly, moving down on the system relies on punishment – lose five minutes recess, “think time,” or call parent.  Consequences are good, you say?  But, how do these things TEACH the behavior we want to see in children?  A child is not sitting still in class, so taking away the one time of day that they can move freely (recess) will teach him/her to sit still?  And if we are clipping kids down and enforcing these consequences consistently, then are we actually managing behavior?  Because the consequences aren’t changing the child’s behavior and now we’re in a punishment cycle where we feel compelled to make the consequences stiffer rather than to consider the entire system is failing.  Let’s reconsider the system together.

These systems operate on some assumptions.

  1. All children come to school ready to learn.
    1. (Spoiler alert:  They don’t.)
  2. All children know what you want them to do and how to do it.
    1. (Spoiler alert:  They don’t.)
  3. Kids at whatever grade I teach “should know better by now.”
    1. (Spoiler alert:  They don’t.)
  4. Punishment is the only way to gain cooperation.
    1. (Spoiler alert:  It isn’t.  In fact, it’s a terrible way to gain cooperation.)

What if we dismissed all of these false assumptions and envisioned a classroom community built on trust and acceptance of individual children’s needs?  What would that even look like?  Let’s start by establishing new assumptions.

  1. All children come to school having already had experiences, both good and bad, for the day.
    1. (Pro tip:  Like adults!  Sometimes, I oversleep.  Sometimes, I spill my coffee.  Sometimes, we run out of hot water.  Sometimes, I’m grumpy.  All of the emotions we as adults experience that affect our day can also be experienced by children.  And their feelings matter as much as ours!)
  2. All children are capable of being taught our expectations.
    1. (Pro tip:  It’s our job to teach!  Some kids need more teaching on some things and less on others.  We still teach.  Behavior is like math.  Differentiated instruction is necessary for all kids to learn.)
  3. All children make mistakes and need the opportunity to try again.
    1. (Pro tip:  Like adults!  I know better than to speed on the highway . . . but, I still do it.  Sometimes, I need teaching too.  Mistakes are learning opportunities!)
  4. Punishment doesn’t work.  It also betrays trust and frustrates everyone.
    1. (Pro tip:  Even after I get a speeding ticket, I speed.  Oops)

So if we assume all kids are doing the best they can and that they need our help to realize their full potential, how would that change our approach to building classroom community?  What if we flip from managing behavior to creating community and developing strategies for meeting individual students where they are?

Jen Newton, PhD is an assistant professor in early childhood/early childhood special education (isn’t that a lot of words for what should be one field??).  I talk a lot and have strong opinions – or so I am told.

Sharing is Caring? Nope. Sharing Sucks.

Kids need to learn to share.  They have to share precious resources with siblings.  They have to share with others at school.  Sharing is a mainstay topic on Sesame Street.  Parents pull their hair out because their kids “can’t” share.  Sharing is caring, a way of life.

Or is it?

Merriam-Webster says “sharing” is 1) a portion belonging to, due to, or contributed by an individual or group and 2) one’s full or fair portion 

Jen Newton says sharing is having enough for everyone including yourself (e.g. birthday treats) and TAKING TURNS is giving “one’s full or fair portion” to another with nothing for yourself.  Sharing is altruistic and happy, it feels good.  Turn taking means waiting, giving up what you had and probably want, for someone else’s happiness.  They are not the same thing but we do tend to confuse them when talking with and about kids.

Adults rarely, if ever, give up treasured items for nothing in return.  Think about it.  When was the last time you gave up something you wanted, really really wanted?  We ask kids to do this all the time.  We tell them they aren’t kind or good friends to others if they do not want to give what they have to someone else.

Adults have to take turns.  We actually do a lot of turn taking in our grown up life; stop lights, grocery store check out lines, drive through ATMs (do people still do that?).  Many adults do not do this well, patiently, with kindness.  Despite our expectations for kids to  willingly and readily “share,” we rarely model this giving-up-of-a-preferred-object-for-nothing-in-return version of caring in our own lives.

So why do we expect kids to do it?  And do it willingly and happily?

The truth is, kids do share willingly and happily.  They just don’t take turns as easily.  Ever curse under your breath at the car in front of you who hasn’t moved despite the light turning green?  Yes?  Then you don’t take turns easily either!

Teaching children to take turns involves strategy.

  1. Start with making turns brief so children do not have to wait long to be rewarded for patiently waiting.
  2. Try a timer, the duration of a song, five pushes on a swing, something tangible even young children can count, or hear, or see.
  3. Provide SPECIFIC feedback for waiting patiently.  “I know how hard it is to wait and you are doing so very patiently.”
  4. Validate that waiting is hard.  Tell your children or students about times when it’s hard for you to wait.  Reveal that turn taking takes effort for all of us – grown ups, too!

Sharing is great!  We all love sharing because we get to bring smiles to the faces of others and ourselves all at the same time!  Turn taking takes teaching and practice and reinforcement.  How do you teach turn taking?

Jen Newton, PhD is an assistant professor in early childhood/early childhood special education (isn’t that a lot of words for what should be one field??).  I talk a lot and have strong opinions – or so I am told.

Teaching Is Intellectual Work

Educators hear it all the time.

“Must be rough to just play with kids all day.”

“Wiping noses and tying shoes, huh?”

“Summers off and work day ends at 3:00?  What do you have to complain about?”

Wrong.

The first five years of life are arguably the most critical in the development of brains, in empathy, in language, in social emotional development, in ways that set the course for a child’s entire lived experience.  Early childhood educators are doing the most critical work of a society – they are investing in the development of humans.

Join us.

We will use this space to promote evidence based practices and to shine light on alternatives to the cookie cutter approaches in education.  We will dismantle beliefs about children and families that do harm and put limits on growth.  We will explore how we can grow toward strengths-based approaches that celebrate the first five years and open the doors for the potential within every child.

Come with us.  

Jen Newton, PhD is an assistant professor in early childhood/early childhood special education (isn’t that a lot of words for what should be one field??).  I talk a lot and have strong opinions – or so I am told.