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I’m sorry, I didn’t know

By Laurisa Ballew

Today I headed to the grocery store. I took with me one envelope of grocery money, one non-verbal three-year old, a purse full of snacks, and a cup of milk. I even had a list, which let’s face it, is the icing on the cake.

I quickly checked things off the list and, to my surprise and delight, Emmaus was amazingly well-behaved. No whining, no throwing her snacks or pulling her hair, just happy to be out with mama. As I rounded the produce corner, a well-dressed woman in her mid seventies inquired about Emmaus’s age. I smiled and said, “She is three”.  The woman (in an overly sweet voice) clicked at me and said, “Well, it’s about time to get her out of those diapers then, don’t you think?”

My heart sunk to my feet, and it took everything I could do not to cry. It has been a hard few weeks around our house. The reality of having a child with special needs and the permanency of that reality has hit me like a ton of bricks. Lately, it has taken all my strength to get myself up, care for my children, and not just melt into a puddle of tears all day long.  And so today, for me to wake up, do our September budget, get to the bank, make a grocery list, and get to the store was quite an accomplishment.

I quickly smiled at the woman and replied “Oh, she is developmentally delayed, and has an uncontrolled seizure disorder, so she’s just not there yet.” To which she looked horrified and said “I’m sorry, I didn’t know.”

See, that’s just it. None of us know.

We all walk around assuming that we know what is happening with other people. We form opinions, and convince ourselves we know best and that our opinions are truth. But, we have no idea what is happening in other people’s lives, what their back story is, or if they have had a bad day.

Yet we judge.

We judge the woman in front of us at the grocery store using Woman, Infants, and Children (WIC) checks she pulls out of her designer purse. We judge the grumpy man at subway who gets huffy with the lady making his sandwich. We judge how people parent, how long they breastfeed, and if they don’t breastfeed. We judge if parents spank or if they don’t. We judge what people feed their kids, or how they restrict their kids. We judge peoples’ homes and attitudes. And yet, we don’t truly know.

Just like the woman who thought she could see the whole picture – a child who looked typical and clearly was old enough to be potty trained, yet was still in a diaper. Did she assume I just hadn’t done it? Or was babying her?
She couldn’t see. She didn’t know.
I couldn’t even be mad because I have been this woman. While I haven’t been bold enough to speak my opinions, I have sure thought them.

The permanency of having a child with special needs has hit me hard. Yet, I am so thankful for the sight it has given me. I am learning to fight my opinions, to give people the benefit of the doubt, and to spread love instead of judgment. I just don’t know what people are up against. I don’t know who is thriving and who is barely surviving. Why not try to love those I encounter? I can speak kindness and give people the benefit of the doubt that they are doing the very best they can.

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Laurisa is a mom living in Kansas City- which she affectionately refers to as “the promised land”. She writes about the incredible joy and deep sorrow that comes with parenting. She is the proud mama to two little girls, Emmaus (3) who has a rare genetic disorder and special needs and Shiloh (1) who eats all the food.

What We Don’t Say: The Danger of Silence

By Maggie Beneke

What was not said? Who was silenced? These are the questions that are lingering in my mind after reading Frederick Erickson’s work (1996). His analysis of classroom discourse has me filtering my experiences as I reflect on the value of being explicit and the actual structure of conversations. I continue to think about how silence provides a dangerous opportunity for individuals to form assumptions.

Yesterday, I spent almost two hours re-hashing a series of comments about gender equity that occurred in a doctoral class with two fellow students. We unpacked how we had each formed assumptions based on what was said. During class, the professor prompted us to share our reactions to an article about how parents explain scientific thinking differently to boys and girls (Crowley, Callanan, Tenenbaum, & Allen, 2001). In this fairly unstructured conversation, our class dialogue ping-ponged from national K-12 test data, to equal pay for men and women, to the number of women doing research in STEM, to the efficacy of the research itself. On top of the statistics and research, this is clearly a topic that evokes a lot of feelings for both women and men in our class; we have all had experiences that shape how we understand gender differences. In the follow-up conversation with my two classmates, it became clear that we each had made sense of the comments and their implications in very different ways. For example, I assumed that when the male classmate stated a data point about academic achievement, he was implying that gender equity has been achieved. And honestly, this felt personal and made me angry. After revisiting the topic and asking more probing questions, I realized he was really trying to point out a flaw in the research article. In the moment of class conversation, I drew conclusions based on an inaccurate judgment. Revisiting the conversation made me aware that I had interpreted and formed assumptions because of what wasn’t said.

When we talk about differences and our multiple “ways of being” (race, religion, family structure, etc.), what is and isn’t said seems especially important. Could structure support us as we engage in discourse? For adults, dialogue about difference conjures powerful feelings, encourages us to associate our personal experiences, and can be quite political. While I am not in a position to criticize the professor’s teaching moves, I do wonder how our conversation about gender equity might have looked differently if we had been given more structure. At Tufts, I was trained as a facilitator through the School Reform Initiative. One goal of this organization is to support educators to engage in focused and productive conversations about issues of educational equity through the use of protocols (2013). These protocols help funnel the exchange of ideas and eliminate the “turn shark” phenomena by providing equitable ways of participating. Although the protocols are designed to facilitate conversations about the dilemmas educators face in schools, I think it could be useful to adapt them for conversations about equity in university classrooms. By organizing “talk” to provide space for multiple voices, they give contributors conversation avenues for being explicit. Perhaps these protocols would provide less opportunity for individuals to be silenced and for assumptions to be formed.

Finally, and perhaps tangentially, I think about what it means to be explicit with children in our remarks about differences. Just as with adults, when we aren’t straightforward with children, we leave space for them to form assumptions about the diversity they see. When adults silence the topic of difference, it can marginalize individuals and groups of people. In my classroom, children were very curious about one of our students. Because of his learning differences, many children were forming assumptions about him, including, “He is a baby.”  I decided to invite the student’s father to speak to the class because I believe that children need explicit language and concrete experiences to make sense of and accept differences. The following vignette illustrates this point:

I sit in the meeting area with my first and second grade class and listen. The father of a child in my class with special rights has just read My Friend Isabelle by Eliza Woloson, as a way to open up a conversation with my class about his son’s learning differences. He explains his son’s exceptionality to the class, “Our son has Down Syndrome. He will learn the same things as you, but it might take him longer and sometimes he needs extra help.” I carefully watch to see how the children in my class interpret and respond to the father’s assertion. A first grade girl, raises her hand and states matter-of-factly, “Well my mom said it’s just because he has an extra chromosome. And also, he is really good at shooting hoops!” I make eye contact with one of my graduate teaching assistants. We both raise our eyebrows and smile. This student’s simple sentence affirmed that all of our hard work mattered.

For both children and adults, it is important to talk about differences. Educators have a powerful role in the ways students engage in talk, shaping both the content and structure of these conversations. The actions educators take to support dialogue about differences is critical, because these conversations involve values and beliefs, influencing how individuals see each other. People are not going to always agree and that can feel uncomfortable in these charged arenas of communication. But when we don’t talk about our different perspectives in explicit, focused ways, we are left with silence. And in that silence, we risk forming inaccurate, and potentially harmful, assumptions.

References

Crowley, K., Callanan, M. A., Tenenbaum, H. R., & Allen, E. (2001). Parents explain more often to boys than to girls during shared scientific thinking. Psychological Science, 12(3), 258-261.

Erickson, F. (1996). Going for the zone: The social and cognitive ecology of teacher-student interaction in classroom conversations. In D. Hicks (Ed.), Discourse, learning, and schooling (pp. 29-62).  United Kingdom: Cambridge University Press.

School Reform Initiative. (2013). Guiding Principles. Retrieved from: http://www.schoolreforminitiative.org/wp-content/uploads/2011/09/guiding_principles.pdf

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Maggie Beneke is a second year doctoral student at the University of Kansas studying Special Education under advisor Dr. Gregory Cheatham.  Her research interests include critical literacy, culturally reciprocal family-professional partnerships, social justice curriculum for young children, and peer acceptance in inclusive early childhood settings.  Prior to studying at KU, she worked at Tufts University’s laboratory- demonstration school as a Head Teacher and Graduate Student Supervisor in an inclusive, mixed-age classroom. There, she was trained as a facilitator through School Reform Initiative. In the summer of 2013, she taught and consulted with the Expanding Minds Program in Mumbai, developing culturally responsive curriculum to support critical and creative thinking for young children.

Good Citizenry 101

My son was diagnosed with Asperger’s Syndrome  (AS) when he was five and a half.  Typically, children that young are not diagnosed with  AS. AS is said to be a high-functioning form of autism where the keys to diagnosis are: (a) short self-stimulatory behaviors rapidly repeated, like flapping, spinning, and rocking; (b) social awkwardness that includes difficulty reading social cues, understanding voice tone, and interpreting facial expressions; and (c) late development of speech.  The symptoms of AS were pretty obvious to the team that worked with him, as it was to us, his parents.

We wanted to get some sort of diagnosis so we could explain to teachers and family.  We also wanted to be able to share with them researched strategies proven to be effective for young children.  When a diagnosis of AS was given we made a decision to never use the “A” word at our house when discussing him. Our 14-year-old daughter has an idea of what labeling might do since she has read some research material I used while getting my master’s degree in special education.

Most of our friends and family are on board and “get” my son. They have read books and articles to be supportive.  Additionally, we see these same supportive friends and family implementing techniques my husband and I use daily.  However, not everyone in our life has come to terms with the AS diagnosis. One family member thinks that we should not let him bounce around the house stimming, although it helps him calm down and helps him organize his thoughts and feelings.  Another family member suggests he is only acting that way around me.

Since receiving the AS diagnosis seven years ago things have settled down. Tantrums are rare and he has made a couple of very good friends. They are not his age, but he is happy.

I teach special education.  I live special education at home with every statement I make to my children. Everything is designed to teach empathy and encourage good citizenship. My husband Jeff and I work together and would not change a thing about either of our children. Both of our children are seen as kind-hearted, thoughtful, and helpful. Since my son does seem to be so “normal” on the surface, people are shocked when something happens.

Such a surprise occurred two years ago at our citywide BBQ contest, where thousands of people come. My kids go every year and hang out in a tent with us.  My daughter will walk around with her cousins.  However, my son is stuck either to my husband and me like glue, or plays his DS in the corner of the tent.  After five and a half hours of being in the tent on this BBQ day, I knew it was time to take him home. I’d like to say it was my stellar mommy skills kicking in, trying to avert a tantrum.  However,  I suspect I decided to take him home due to the huge tears he was able to produce (he is able to spew tears if he thinks of something sad- real or imagined) proving he was ready to go home. All was well, the backpack was loaded with his electronic devices and games, the kisses and hugs were given good bye, and we were on our way.

The exit with a bit of a drop-off was about twenty yards past our tent.  You would think that tragedy struck from the blood-curdling scream my son made when he fell down at this drop-off. We attracted about a hundred people from the scream. The police walked over to check on us. One man was certain my son needed an ambulance. A nurse stopped by to check on us. She asked if he was ok, I started to tell her, “He’s ok, he just has A…..” She stopped me and said she understood.  Immediately the nurse started getting people to go away asking them not to hover and stare.  I will forever remember her not allowing me to say that to her.  She did not need an explanation and my son did not need an excuse for his behavior.

I am holding my son in my lap in such a way to administer pressure to his torso, a technique that helps him feel more comfortable when he is upset, sad, or scared.  Meanwhile, I am insisting to everyone that he is fine.  I asked the man, who suggested my son needed an ambulance, to go away since he was just staring at us with his group of friends.  Similarly, to the people passing by I replied, “his knee is only scraped”.  To the police, “there is no need for police intervention”.  At this point I had tears running down my face.  How do you explain any of “this” to a group of strangers?  How do you say “this” is part of his thing?  “This” is part of his hyper-sensitivity to pain (along with light and sound).  “This” is part of who he is but most of the time he is smiling and happy. How do you explain those things to a bunch of people who are whispering and pointing?

Several minutes have gone by, my daughter has run back to our tent to retrieve a cousin, band aids, Neosporin, wipes, and a tissue (for me).  My niece is wiping off his knee and he is still screaming.  People are still staring.  The nurse had tried to get on her bus to go back to her car, but came back when another round of people came to gawk.

My constant coos of “you’re fine” did not help.  There is no getting a child with perseveration issues like this to just stop of his own accord.  I calmly suggested to him that he needed to stop screaming because the police thought I was hurting him or his leg had fallen off.  Since neither had happened, he needed to not scream quite so loudly. Surprisingly, that angle worked.

Once he was bandaged (three small band aids). We gathered our things and hobbled home. We only live a couple of blocks away. He was even able to run across the bigger street (he gets nervous in the road and needs to get across quickly).

On the way home, after my children and I had settled down, I thought it might be a good time to discuss with my son how the screaming led all the strangers to believe that his leg had fallen off.  He said he would try not to freak out like that again.  I thought it important to address the incident again in the morning.

“I know you were tired. I know you wanted to come home. Can we think of some things that we could do to not freak out when you get hurt?”

He replied, “I am not good at not freaking out when it hurts super bad and it is bleeding. You know if that does happen again I will start crying again.”

I answered, “But, can you try not to scream?”

Nodding his head yes, “I will try not to scream.”

This was not a tragedy, but I laid awake that night for hours trying to think of ways I could have avoided that huge melt-down and crowd-gathering event.  One, I could have stayed with him at home.  Two, I could have hired a sitter (though the whole town was at the BBQ). Three, I could have taken him home earlier.  Four, I could have not cried in public.  I realized the tears were an outward demonstration of several feelings.  First, I was embarrassed that I, all knowing self-proclaimed wonder-mom, had lost control.  Second, in the 5 minutes my son and I were crying (his a bit louder than mine) I mourned the inability to get strangers to accept my child was different (to their standards).  Finally, there was some anger or frustration that people pointed, whispered, and stared.  I did not understand this as I had taught my own children it was inappropriate to point, whisper, and stare in “Good Citizenry 101”, apparently the nurse took the class too!

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About Heather G. Wolf

I’m a second year doctoral student at the University of Kansas.  I am studying technology interventions in the special education department in addition to my part-time job as a special educator and my full-time job as a mother.

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