David Can't Come Over Anymore: Rationalizing Rejection

“David can’t come over anymore.”

Those five words ended our family’s friendship with a couple and their children.

Our son David was approaching adolescence, and his good friend A_____ was still years younger.

A___’s mom had been our Maid of Honor, our daughters were good friends, and our two sets of sons were frequent playmates and got along well. Our families were close—in our case, they were our closest friends.

Then the bombshell.

A___’s parents were concerned that David’s Asperger’s behavior might influence their son. They proposed a solution. Our families could continue to be friends. We could continue to alternate sleepovers and share holiday meals. We could trade hand-me-downs and toys as before.

Except David.

If David came for Thanksgiving—say, he must remain with the adults instead of going off and playing with the kids. If we wanted him to play freely, we had to promise direct and constant supervision. Sleepovers were out of the question and unsupervised time with any of their children was verboten.

We pushed back. What had happened? The worst example they could give was that David led their son in a game of loading toys on their treadmill and then turning it on to see the toys fly off the back. Their son wasn’t allowed to play on the treadmill, so our son’s corrupting influence was clear.

David begged for a second chance. Faced with his grief, we tried to talk to the parents, but they would not budge. He wrote them a long and personal letter about how he felt and what they had decided. He was not rude, but he was blunt. They replied with a thank-you note and gave him a gift card.

The parents later told us that they never read David’s note, believing it was disrespectful for a child to address adults so directly. They earnestly claimed that the issue had nothing to do with Asperger's, but was only because of the age difference. Of course that standard didn't apply to siblings or other family friends. Just our socially different son.

David has never forgotten, and observing his heart from outside, I suspect he has never fully recovered. Our good friends rejected our son. They were genuinely surprised that we wouldn’t relegate him to second-class status. They were surprised that we valued our son’s dignity above our family friendship. They thought we would endorse their rationalization.

I am sad that they didn’t have room in their hearts for our whole family. I am sad that my wife is estranged from her college roommate, maid of honor, and one-time best friend. I am sad that our daughters lost years of friendship. But mostly I am sad that David lives with a message that he is unwanted.

No rationalization can make up for that.

Physical Frustrations #2: Protecting those Affected

Many of us on the spectrum struggle with physical environments and tasks. Here are two strategies to help students in classroom and other school settings.

1.                    Help me control environmental stimuli. Light, sound, odors, and textures are not simply preferences as they may be with some others. These environmental factors can be incapacitating. For example, whenever I enter a classroom or meeting space, I always find the direction of the most sunlight and then sit with my back to it. When teachers assign seating, they sometimes forget to consider that sitting by the clock or next to the hallway can be very distracting for me. I can adjust, by shutting down, but this affects my performance in class. The stimuli in even a normal classroom can be too much for me. I need a way to block out at least some of those distracters. Special seating, a “calming spot” or the option to leave can all give me the security I need to cope. Even when I don’t exercise these options, knowing they are there is calming and helps me maintain composure.

2.                    Recognize my physical challenges. Distractions are minor compared to the potential catastrophe of physical performance. In classes where physical competence is expected, I can fail with spectacular and miserable results. P.E. Classes are a major culprit, as motor clumsiness and social awkwardness combine to make me especially inept at team sports. Situations where I am expected to learn by trial and error are an invitation to meltdown. While others might learn from striking out or missing a shot, I spiral into a cycle of futility and frustration—sure that I cannot succeed. This is usually reinforced by the snickering assessment of my peers. Don’t join them. Warn me in advance when you plan to introduce new skills or physical tasks. Give me a chance to prepare for the science labs or art projects that require fine motor control. Plan  roles for me in PE that protect me from being the odd one out. Please.

I wouldn't trade you for your twin...a free-form letter from this Asperger's Dad to my Asperger's son

David,

I wouldn’t trade you for your twin.

 

The day you were born, your average twin disappeared

I spent nine months and more planning for your twin

He was the child with a bright mind and ordinary senses

Certainly he would be above average, but not too far

He was predictable and normal in every way

•Reading at a normal pace, 

(not instantly like you)

•He would drift from enthusiasm to interest

(without your intense commitment)

•He would see some possibilities and creativities

(but not all of them)

 

When I planned for your twin, I failed to plan for you.

 

I didn’t expect your amazing powers of perception.

Your ability to find mistakes in every textbook

Your ability to hear a ticking clock from across the room

Your ability to detect minute differences in fabrics

Your care and compassion for people who don’t expect it

 

I didn’t know a person could be so creative, finding music in materials, a rainbow in paint swatches…

 

Your insight and intelligence were a complete surprise.  You think on such a different level

 

I planned for a child with normal senses—with dull hearing and a soft touch.  

I didn’t know to hope for someone with super-sensitivity and super intelligence.

 

It took me years to figure out that we had David, not your twin.  

But knowing that, I wouldn’t trade you in.

 

Dad

 

Physical Frustrations #1: My Body Betrays Me

Asperger’s syndrome is a neurological condition.  It isn’t a psychological disorder like depression or anxiety that might go away with time and therapy.  Asperger’s and other Autism Spectrum disorders are in a category the American Psychiatric Association labels Pervasive Developmental Disorders.  The name itself reveals that this syndrome is a permanent, physiological condition. We have general motor clumsiness, especially for large-muscle coordination.  This is part of why we tend to dislike and avoid sports, especially team sports which put our social and physical clumsiness on display.  

It may be hard to see, but those of us with Asperger’s have a disability.  It may be masked by superficial normalcy, or adequate intelligence, but we are disabled just the same.  Most of us with Asperger’s also have overly effective senses. In fact, Asperger’s Syndrome is often comorbid with Sensory Integration Deficiency or Sensory Defensiveness, conditions that arise from a nervous system that is too proficient. Every sense can give us trouble. For many with Asperger’s, sounds are the biggest distraction.  Ticking clocks, booming pipes, buzzing fluorescent lights and the 60-cycle hum of electrical equipment can be as intolerable for us as fingernails on an old-fashioned chalkboard may be to you.  Imagine trying to attend to a lesson, read a book or concentrate on a test while someone was dragging fingernails down a chalkboard. Would it be enough to tell yourself, “just ignore it.”  “Just ignore it.” is the universal first response when someone with Asperger’s raises a sensory complaint, but that just isn’t possible.  Part of the syndrome is an inability to selectively block out undesirable stimuli.  My personal issues tend more toward tactile sensitivity.  I cannot wear any shirt with a perceptible tag in the collar.  Clothing with “rough” or “scratchy” fabric is intolerable.  I love the feel of microfiber, flannel and silk, but don’t ever want rough nylon, wool or textured cotton against my skin.  It drives me crazy.  We Aspies know that some forms of lighting, or glare from surfaces can have the same effect.  We sometimes change our seating or request to draw blinds or shades to even out the lighting.  I don’t mind fluorescents, but I always sit with my back to windows if I can. Even on overcast days I wear sunglasses.  Smells and taste are less likely to show up as classroom distractions, but it might help to know that people with Asperger’s sometimes have a condition called Synesthesia, where sensory input is crossed up.  In that condition, intense colors can evoke smells, abrupt sounds can causes visual hallucinations etc.  If I tell you something like that is happening, please take it seriously and help me adjust. 

Social Incompetence #2: Coach Me Please!

Be my coach.  Like the coach of an athletic squad, you can help me improve my performance through careful observation, constructive criticism, guided practice and getting me in the game.  The difference is that while everyone else seems to know the basic rules of the game, I’m playing with different equipment by a different rulebook.  I need explicit direction.  I need word-for-word scripts.  I don’t know how to shake hands, carry on a conversation or read the cues that tell me it’s time to move on.  Temple Grandin, an accomplished engineer, professor and author with a Ph.D. in Animal Science from Colorado State University is one of the most celebrated individuals with Autism in this era, and she describes the social challenges this way: “Figuring out how to interact socially was much more difficult than solving an engineering problem.” (Sedran 2006)[i]

Translate intuition into cognition.  People with Asperger’s have capable intellects, and can process a great deal of information quickly if we know what to look for.  If you can help us by reflecting on your intuitive perceptions and decisions, we can learn how to observe what you perceive.  This distinction is critical.  For example, I studied communications in college and was liberated by the concept of non-verbal communication.  The coursework gave me a long list of postures, behaviors, expressions and intonations that meant something.  Rather than the inscrutable “sense” that others relied on, I could count the number of folded arms, check the amount of facial responses, review the general level of energy in the room and adjust my speaking or teaching accordingly.  As a teacher, I need you to watch me flounder a bit in a conversation, then intervene with quick feedback to dissect my struggle.  I have learned that comments and postures that scream to my wife or colleagues are lost on me.  However, once I learn the cue or clue, I can usually remember to watch for it in the future.  Your coaching can help me grow from oblivious to observant.

Set me up for success.  When forming groups, initially put me with students who are more patient and tolerant.  Be cautious about letting students select their own groups. You might even consider coaching the rest of the class on how to give me explicit feedback to help me stay in bounds.  Since peer approval is important to me, give me opportunities to be socially successful by telling me explicitly how to initiate, continue or terminate interactions.  Redirect me when I don’t get it right, and reinforce me when I do.

 

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[i] http://www.leadershipmedica.com/scientifico/sciefebbr03/scientificaing/2sedrane/2sedraning.htm

A 6th Grader with AS Advocates for Himself

When my son David changed schools and enrolled in sixth grade, he wanted to explain to his classmates what Asperger's Syndrome is and how they could best relate to him. For many in the room, (including his teacher) this was the first time they had heard of the syndrome.

That day was a big day for David. Just now I asked him if he still had those notecards. He knew instantly where they were—five years later—and brought them to me immediately.

David sat on a stool in front of the class and read from these six notecards. The words are his and the idea to explain himself to his class was his as well. Two of his classmates from sixth grade remain very close friends five years later.  I wish I had video, but picture a 12-year-old boy, new to the school, sitting on a stool in the front of modular classroom. This is what he shared:

There is no silver bullet for explaining Asperger's, but giving this short presentation to his classmates gave David a voice. More importantly, it gave his teacher and classmates permission and guidelines to help him be his best self.

Recommended Blogs #1

Social Incompetence #1 Persistence & Pain

Unlike people with classical autism, I am not satisfied to live in my own, isolated world.  I want to be part of your world, especially the social universe.  Unfortunately, I am an alien.  I don’t have the communications sophistication, emotional control or general intuition your society requires.  I am a social incompetent–eager but awkward.  Consider the book titles authored by people with Asperger’s:  Freaks, Geeks and Asperger’s Syndrome by Luke Jackson; Pretending to be Normal by Liane Holliday Willey; Asperger’s Huh? by Rosina Schnurr.  These titles reveal the distance we feel from normal society.  They are matched by websites like WrongPlanet.net and Aspergia.com, a decidedly defensive Aspergian community.  

We with Asperger's are intelligent enough to perceive our difference–acutely.  Our sense of abnormality is a persistent gloom, and many of us fight daily to pierce it.  I distinctly remember at age five learning that my normal conversational impulses were unacceptable, and had to be replaced by socially proscribed scripts.  For you normal folk, the ones we Aspies label “NeuroTypicals (NT’s), that might be part a normal process of acculturation and maturation.  For us, it is a gap that widens through childhood and explodes in adolescence.  I need your help to bridge the gap.  I need friends, and more importantly, I need explicit coaching on how to be a proper friend.

Charter Schools are a better model for special education: A Principal's Perspective

This entry is cross-posted from my more general blog on Charter School Insights.

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The same market forces that bring charter schools into existence help them stay focused on the needs of their clients. The financial constraints facing most charter schools keep them frosty when it comes to pleasing parents, hiring intrinsically motivated teachers, and doing right by kids.

At the Classical Academy in Colorado Springs, a group of nearly 20 teachers, resource staff, former teachers, principals, school psychologists, ad parents showed up for my daughter’s final IEP meeting. That meeting was a celebration of her progress through special education and her return to general education. As a principal, I have attended many such meetings. I know that teaching and leading at a charter school is mostly a labor of love. I suspect that a few teachers in charter schools are “paycheck pros” who take an acceptable wage and deliver uninspiring service. But I’m certain that most of the teachers, tutors, assistants and administrators who staff over 4,000 charter schools around the country do so because they find value and significance in nurturing children. Witness the growing number of charter schools aimed specifically at students on the autism spectrum. These students can be tough to teach and emotionally draining—but we love them. The parents who start such schools, the principals who lead them and the teachers who staff them are noble idealists. Their kind have been represented on every school staff since we started ringing bells and gathering at the front door.

The difference with charter schools is that there is a higher concentration of student-focused, customer-oriented, principle-driven adults than in a normal school. You will not find any “rubber rooms” or “reassignment centers” in charter schools. In part, this is because you rarely find a thriving union at a charter school. Charter schools may struggle to attract and retain the most experienced professionals, but thanks to excellent professional resources and the flexibility of RtI, they have many ways to help special needs students be successful. Traditional schools don’t always know what to do with twice-exceptional students. They don’t typically have a neat program that maximizes these students’ abilities while scaffolding their deficits. Charter schools don’t have a program either, but they are much more likely to have an intimate relationship with a parent who is making a specific choice to bring a challenged child to a public school. That parent has a lifetime of insights—and access to school staff who are eager to hear them.

         In full fairness, there are parents who have had bad experiences with special needs education at charter schools. There are parents who disagree with my perspective or level of service. But those parents have had many hours over many years to press their case with me and others. They have aired their concerns and got most or all of what they felt their child needed. We who have poured our best into the charter school movement are motivated to be resourceful, responsive, optimistic, and diligent. We are exactly like the pioneers who settled the American West. We cannot afford to ignore the gift and potential of a child or her family just because they come intertwined with learning challenges and struggles. We want to succeed together, and every solution we develop prepares us to attract and serve the students we need to mature and thrive. Parents, by partnering with us to serve your child, we are both strengthened—and strengthened schools and parents are good for all students…especially the most special among us.

Charter Schools are a better model for special education: A Dad’s Perspective

This entry is cross-posted from my more general blog on Charter School Insights.

Charter Schools are a better model for special education: A Dad’s Perspective

As a parent of six children—three with IEP’s, three ELL’s, one 504 plan and one ILP, I have some familiarity with the parent experience of special education services. My exposure as a parent began when my firstborn was offered an IEP in Minnesota. It continued as I adopted three children with no English skills, fathered another son and daughter with learning challenges, and ended up seeing my special needs children learn skills, make honor societies, graduate, attend college and generally accumulate many of the benefits of a free and appropriate public educations.

Unfortunately, there have been some serious hiccups along the way. There was the principal in North Carolina who said indignantly of our Ethiopian-born ESL daughter, “You can’t expect us to find someone who speaks her language!” (We actually wanted someone to help her speak our shared American language.) Then there was the school whose idea of occupational therapy was doing jumping jacks and wall sits in the principal’s office. Don’t make me talk about the teacher who forced our physically impaired son to attempt 20 pushups in front of his classmates as punishment for a missed attempt at throwing trash in the wastebasket. There was the Colorado school where scoring a 5 on the ASVAB (30 is the minimum score for entry into the armed forces) was good enough to graduate. Like most problems with special-needs education, the issue was often that the well-meaning educators didn’t have the resources or expertise to differentiate instruction and classroom environment effectively.

On the other hand, there have been sparkling moments of grace and compassion that helped our children grow and thrive. Mrs. H. gave our son permission to go into a classroom phone booth to manage his sensory overload. The ESL teacher in Minnesota attended evening school events with our daughter to help her use English in context. Mr. A. formed a international tribe of English-learning students through the sheer force of love and optimism. His self-fulfilling prophecies of success made a cohort of young learners thrive. Many of them—after only a few years in the country, were initiated into the National Honor Society at a major public high school. Our daughter was there because Mr. A. cared.

So, since these positive example include traditional public schools, why do I claim that charter schools are a better system to support special needs learners? It is precisely because I bring a father’s heart and experience to the principalship that I can speak to the difference between traditional and chartered public schools. Tomorrow, I’ll pull on my principal's hard hat and explore some of the student-supporting characteristics that I’ve observed across the charter school community.

Emotional Frailty #2 Protective Practices

Here are three things that classroom  teachers can do to protect my emotional frailty:

1. Provide a quick exit.  If I feel trapped in a situation where my emotional state is spiraling downward, I must have a safe and guaranteed exit.  Give me a code word, a permanent pass, or a “get out of class free” card.  No matter how important the academic or social lesson may be, there is absolutely no way I will learn or retain anything if I am frantic to preserve my composure.  Robert Sylwester points out that emotional safety must precede learning. (Sylwester 1995)  Psychologists know it too.  If I fear my social/emotional safety, learning is already forfeit.  Please don’t sacrifice my emotional identity for a lost cause.  Let me retreat and learn another day.

2. Designate a safe haven.  Depending on the school environment, I might need a quiet corner of the classroom, a special chair, or removal to a resource room, counseling center or library chair.  Pre-determine the acceptable locations, in a cascade order and teach me the order.  “Go to the resource room first.  If it is empty, go to the library.   If Mrs. Grey is not there, wait in the front office.”  Assure me that I will not be penalized or punished for going to my safe haven.  Protect me from ridicule or stigma by explaining to my classmates that I am permitted and encouraged to manage my learning needs by relocating when necessary.

3. Protect me from emotional injury.  In the emotional herd called school, I am the weak and crippled.  Other students can sense and see my vulnerability, and at their worst, they act like emotional predators–attacking my weakness.  They mock me subtly, to avoid detection, but I’m too literal to get it–so they escalate the insults and sarcasm until I break down or you break in.  In most cases, you discern the pattern before I do.  If you tolerate the bullying, or worse yet, participate in it yourself, you make it clear that I am fair game.  Please do the opposite.  I’m the endangered species in your class, deserving and needing your protection.  I’m not confident or sophisticated enough to guard myself.  I’m counting on you.