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My Child and Me: Traversing The Educational Terrainby Patricia Alvarez McHatton & Elizabeth Shaunessy - November 27, 2006 Background/Context: The study emanated from interviews with caregivers of children with disabilities. We sought a way to convey the emotional power in the parents’ voices. Purpose: The purpose of the study was to understand parents’ perceptions and convey them through a creative vehicle, inviting consumers of the research to become participants in the meaning-making process through their active engagement with the text. Research Design: This investigation is a secondary analysis of two qualitative studies exploring the school experiences of parents of children with exceptionalities. Both original studies consisted of structured interviews; caregivers discussed their experiences raising a child with a disability and their interactions with the educational system. Conclusion: Results indicate that most of the participants experienced multiple challenges with the educational system, specifically related to their child’s behavior. Several caregivers recalled being asked repeatedly to come and pick up their child and questioned the effectiveness of this strategy. In many cases, they shared frustration at the expectations others had for their children and spoke of their hopes and dreams for the future. All expressed concern over what will happen when they are no longer here to look after their child. Their stories also revealed resiliency and advocacy efforts as they strove to ensure their children received necessary services. Many of the parents spoke about both positive and negative experiences with school personnel and several expressed gratitude for a specific teacher that had reached out to them and their child. Each of the participants’ stories was powerful and moved us to reflect on our own experiences as researchers, educators, parents, and relatives of children with exceptionalities. In considering how to best present the data, we determined that a performance piece would be the most appropriate venue. It is our belief that a product such as this would serve as a beneficial teaching tool in the preparation of pre-service and practicing teachers to work with caregivers of children with exceptionalities. To listen to the audio version of this commentary, please click here. The following poem(s) represent our findings from a secondary analysis of two studies exploring the school experiences of parents of children with disabilities (Thomas, Alvarez McHatton, & Shaunessy, 2006; Shaunessy & Graffam, 2005). There were 11 participants, eight of whom were Hispanic. Four of the Hispanic participants were not proficient in English; those interviews were conducted in Spanish and then translated into English. Exceptionalities were varied and included Asperger’s syndrome, developmental delay, giftedness, autism, behavior disorder, ADHD, learning disability, Tourette’s, and Ehlers Danlos syndrome. Data consisted of 317 pages of transcriptions from which 316 quotes emerged. For this piece, quotations coded as school interactions, future aspirations, hope, advocacy, and belief in experts were extracted. This data consisted of 146 quotations. Quotations were collapsed by codes. Findings are presented via found poems, which are produced by selecting and combining memorable words and phrases from the data, adding poetic structure to the text (Oyewole & Inada, 2006). Each of the poems represents a composite of the experiences relayed by the participants. Throughout the text, we have interwoven self-reflections in the form of meta-narratives and problematics (Peshkin, 2000), revealing how we, the researchers, interacted with and made meaning of the data based on our own individual experiences and multiple identities (Harry, 1996) as caregivers, educators, and researchers. We purposely have refrained from providing extensive commentary beyond our own meaning making, encouraging the audience to identify the pieces that speak to them individually. Sitting in the living room, multiple living rooms, at kitchen tables over coffee, they tell their stories, stories of parenting children with disabilities. We sit down with Allison’s mother and father at their kitchen table. They share their daughter’s challenges in school–the fine motor coordination delays, reading, and vocabulary skills years ahead of her peers. Allison mystified them and confounded her teachers. Allison’s mother remembers the night she waited eagerly for her husband to return and share what took place at the welcome night for parents of pre-schoolers. BACK IN SCHOOL Parent conference night Constant wiggling As adults try to find comfort in the child sized seats Accolades for student work Until… Teacher points to a drawing My daughter’s drawing This child chose not to follow the directions and just made a mish mash! You must stay within the lines Stay within the lines Stay within the lines Blood rushes to my face Devastation lasting long past Parent conference night When did school become a gotcha experience? Bob and Martha have a plush couch and their large sliding glass windows offer an expansive view of countless potted plants. They tell us about their grandsons, John and Paul, and how they have experienced teachers, most of whom have little to no knowledge of giftedness, Asperberg’s syndrome, or Tourette’s. I wonder if the teachers know about the boys’ mother who has schizophrenia and their father who lives several states away and fights daily battles with alcohol addiction. Bob and Martha share numerous accounts of their grandsons’ brilliance, proud of these teenage boys but still trying to make sense of what happens in school. Parents are often able to tell me of their child’s brilliance. How many of us think they are telling tall tales or question if they are at the very least in denial about the real child–the one we think we see. Paying attention with eyes closed The teacher would use a question as punishment Asking him something She’s sure he wouldn’t know But he does Foiled Paying attention with eyes closed NEXT STOP She’s Gifted Oh yes, and has Asperger She made 100 on the practice state exam Doesn’t matter Doesn’t matter Must review All day Drill and practice Drill and practice Drill and practice Out of her mind, she crawls under her desk Hands over her ears Next stop The principals’ office For misbehaving Child must comply Before we make any changes Sitting alone in the sandbox Playing quietly Other children taunting, teasing Ignore Ignore Ignore ENOUGH Sand flies in their faces Running, crying to the teacher Next stop The Principal’s office Off the honor roll list Can’t go to music class anymore acting out inappropriate Next stop The principal’s office Flirting with the girls well, what 6th grader doesn’t just because he is in a wheelchair doesn’t mean he doesn’t have an attraction for the opposite sex Early morning fog lines the road as I make my way to Vivian’s home. Not sure of where I am going, I call her. No te ocupes, yo voy afuera para que tu me veas. (I’ll go outside so you can see me). I keep an eye out and sure enough, soon see her waving at me. I turn into the subsidized housing unit and she directs me to a parking spot and waits as I make my way up her front steps. As I enter I notice a puppy on her couch. I immediately am drawn to it only to find it is a stuffed animal. She giggles and tells me how everyone that visits always thinks it is a real puppy. We make small talk as I set up the recorder. Slowly she begins… COME AND PICK HIM UP When he was in school He had conduct problems and they would suspend him If not suspended By noon he was already out they couldn’t handle him Come and pick him up Confusion Why would a school that deals with conduct behaviors Suspend my son Due to his conduct They were driving me crazy They would call my work Come and pick him up Is he sick No Is he being aggressive No Then why are you calling me Desperation I need my job He was sent home for 15 days Not suspended So they say Frustration They started calling my work again Come and pick him up It was affecting my job Me Always nervous Couldn’t eat Couldn’t concentrate Do you know what its like to come home to feed 3 children And you haven’t had a moment’s peace all day We had sacrificed so much And they still kept Calling Come and pick him up and calling Come and pick him up and calling Come and pick him up When my son was suspended for a month I would have to take him to work with me I told her you need to find a way to work with him yes I can go pick him up and take him home today But tomorrow It’s going to be the same Come and pick him up He tries to manipulate them He’s very good at it I let them know because he wants to be at home He knows that if misbehaves They will call me Telling me to Come and pick him up And I will have to bring him home They were giving him what he wanted He was manipulating them Perhaps, perhaps… We should send him to school one morning No medication and say Look folks, this is the real Jason Now what Come and pick him up SORRY, NO SERVICES HERE Under cover of silence Home schooling would be best But… You didn’t hear it from us It would be much better if you look elsewhere In my area There was no school with a special education classroom He will have to be bussed You see, your son is autistic We can’t teach him No, no, no He’s not supposed to be here Where then and when were you going to tell me It seemed like they wanted to get him off their case This was the last school they were going to try it if it didn’t work there they had no place for him 6 different schools in 2 years How many more I called the school they brushed me off Said, No they don’t have accessibility for wheelchairs they don’t have ESE It’s a two story building classes could be anywhere One of many battles He has a thermal regulatory problem He doesn’t sweat Can’t cool off Up north he had to be in an air conditioned bus Down here there were no air conditioned buses I called the school board And fought Until they got him an air conditioned school bus Then they tried to take it away No Mom, that cannot go in the IEP It has absolutely nothing to do with school If he gets sick and can’t go to school Doesn’t that affect his education The papers said one thing But they would tell me differently they would say We can’t deal with your son But when my son came home from school each day 75 %, 85% or 95% written on his papers Notes saying “good behavior all day” CONFUSION When I came here, I came with the idea that she would receive more therapy But the school here said No The pediatrician recommended speech therapy But the school said NO I had to seek independent therapy because The school said No Nobody was willing to accept responsibility for accommodations he needs to be successful No one Not the principal No Not the classroom teacher No No Not the guidance counselor No No No No one would take responsibility She tells me of her job as a day care assistant and shows me the letter she received just last week from Medicaid. Services have been terminated because she makes too much money. In my mind I am thinking, “Too much money?” How much can she possibly make? $6.50, maybe $7 an hour? With three children? Panic swells in my chest and I ask her what she is going to do. She is calm and assures me that things will work out, somehow, someway. I wonder if I would be so calm given the same circumstances. Their strength is evident as they talk about the lengths they went through to get the necessary services for their child. At times asserting quiet dignity, other times going on the offensive. PICKING YOUR BATTLES And I went in there screaming and told them if they didn’t get her some help, I was going to get a lawyer, So I went in there and Demanded help and I went so far above the principal’s head she got an assistant right away until They put the OT in place I had to threaten them I went the other day And told them that maybe There was someone else who could help me Maybe not But I wasn’t moving from there until they found someone I could speak to They found someone I filed a complaint that my son was not at school I still had him at home The next day they came to my house And they found a way to get him in school Some people don’t want to help I write their name the date I was there the time When I come back I let them know who I talked to what happened last time Intimidation Gives me what I need I would fight until the end I would move an entire town I would fight no matter what the consequences would be MOLD AND MILDEW First day of school I see mold and mildew in the classroom I asked the teacher about it she said it will be taken care of But it wasn’t And he got sick Real sick He was in the hospital for two weeks The doctor said he can’t go back there until it’s gone Back to the teacher She gave me a real hard time I went to the assistant principal mold and mildew I went to the principal mold and mildew I went to the Health Department mold and mildew I went to the School board mold and mildew I went to the Superintendent mold and mildew They put him in the library And condemned the portable For 3 months he was in another classroom When he went back to her it was a fight The teacher would call him names put him down degrade him nitpick every single day He would come home every day crying He didn’t want to go to school He wanted to drop out That was the school year of hell The teacher is gone now Because of her behavior How she treated the kids Too late for him Her story reminds me of my son’s experience in second grade—that was my year from hell. His teacher began calling me the first week of school and every week thereafter. He is disruptive, he is talkative, keeps others off task, doesn’t do what he is told. I explain to her the need to keep him busy. “Give him more work. He is bored and needs a challenge.” She didn’t hear. The next week the call comes again, and the week after, and the week after, and the week after. She wouldn’t stop calling so I stopped taking her calls. He changed schools for third grade and got a teacher who understood him and expected things of him. He still talks about her demands that he learn the multiplication tables, a skill he found difficult to master. He was soon found to be gifted. Thank God, for if he had not been found gifted I fear he would have been found to be damaged goods. I realized that if you are smart you can be eccentric; if you are not, then you are a problem. EXPERTS I think this is the best for your son Back then I said, “Yes” to everything At the beginning with my son I would say “yes” too to everything they said Because I thought that they Were the specialized people They know better Emotionally drained So I went along with the situation Teachers know what they are doing Don’t they They would come with some things And I would say “God give me patience and strength “ Because I didn’t understand why These people had to be doing this Come to the meetings they said but don’t talk it wouldn’t be convenient I didn’t come all this way Make all these sacrifices for them to tell me not to talk They just tell you superficially what’s going on, They don’t really give you all the information I wasn’t encouraged to be a participant In the IEP process It was as if the educational system was fighting a war with my children and me Who are the experts? Classroom teachers? Parents? Researchers? How do we negotiate this? The parents wanted our counsel as researchers–experts in their eyes, we wanted their help. They looked to us for answers and we looked to them for understanding. Early in our careers as K-12 classroom teachers, we rarely looked to either researchers or parents for guidance. ALL IS NOT BLEAK… I became overwhelmed with their stories and wondered where all the good teachers have gone. Finally, I saw them… The teacher The paraprofessional They are all very nice with me I call them when she can’t be in school We have a good line of communication She was so nice She said she would take my son into her classroom It was good to give him an opportunity She opened the doors for me For him It’s a really good school I love the teachers They are really good with him I am so impressed they write a daily note this is what he did today and if he ate if he slept I told the teacher thank you Thank you For whatever it is that you’re doing For the help Because every little bit Everything helps They said let us know what else we can do She has the heart of a mother In addition to that of a teacher You can tell that she is an exceptional teacher As a parent, and as an aunt, we found ourselves wondering about the parents’ hopes and dreams for the future. Are they consumed by thoughts of their own mortality and the implications for the children they leave behind? How do they transcend those fears? Transcend. What an interesting word for us to use here, as if they need to rise above or overcome. Whose fears are these? Theirs or ours? In retrospect, it is not they who are uncomfortable, it is us. THE FUTURE When he experiences typical boyhood behavior it makes us feel very very happy, because any boy would feel that way grin like that not because he has Asperger’s not because he’s Gifted But because it is what a typical boy does Laughter His laughter Lord, how we enjoy listening to it A good hearty laugh from way deep in his soul When that happens and he just lets loose just a genuine laugh and you know something has really tickled him that is beyond cool Because any boy would laugh that way… not because he has Aspberger’s not because he’s Gifted But because it is what a typical boy does I want her to learn as much as she can so she can develop into an independent person so she can do something at least eat She loves to eat Once, they were going to have to insert a tube into her stomach I said no, that’s what she enjoys They’re not going to take away Her only joy What do we do ten years from now Will he go to college Will he graduate from high school What kind of job can he possibly hold His future is our biggest concern What will be of him when I am no longer here That is something that goes through my mind over and over again I hope that the day that I’m not here he can take care of himself be independent Because he is not going to have his mother all his life I want him to Feel comfortable Feel complete I would like to know that he Will be able to fit in somewhere That he will be fine We want our children to… be socially accepted be normal, or pretend to be be able to care for themselves be out in society improve play with other kids be as happy as our other child communicate effectively be able to talk so that one of these days he says Mom, I love you That dream gives me the strength to go on I have faith Faith that he can and will do much better than what he is right now I have faith I have faith I wish now that I had dispensed my knowledge less and listened more to parents. The authors wish to thank Eric Jordan at WUSF for his assistance in the audio production of this work. References Harry, B. (1996). These families, those families: The impact of researcher identities on the research act. Exceptional Children, 62(4), 292-300. Oyewole, A., & Inada, L. F. (2006). The expanding canon: Teaching multicultural literature in high school. Critical Pedagogy: Teaching Strategies. Retrieved May 19, 2006 from http://www.learner.org/channel/workshops/hslit/session8/teaching/4ts.html. Peshkin, A. (2000). The nature of interpretation in qualitative research. Educational Researcher, 29(9), 5-9. Shaunessy, E., & Graffam, B. (2005, April). Gifted children with Asperger Syndrome: Understanding the familial context. Paper presented at the Annual Conference of the American Educational Research Association, Montreal, Canada. Thomas, D., Alvarez McHatton, P., & Shaunessy, E. (2006, May). The school, my child, and me: Parent perspectives. Paper presented at the Second International Congress of Qualitative Inquiry, Urbana-Champagne, IL.
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