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My Child and Me: Traversing The Educational Terrain


by 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.






Cite This Article as: Teachers College Record, Date Published: November 27, 2006
https://www.tcrecord.org ID Number: 12855, Date Accessed: 11/29/2021 4:41:11 PM

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About the Author
  • Patricia McHatton
    University of South Florida
    E-mail Author
    PATRICIA ALVAREZ MCHATTON, Ph.D., NBPTS, is an Assistant Professor in the Department of Special Education and the Undergraduate Program Coordinator at the University of South Florida. Her research interests include preparing culturally competent educators, experiential learning and service learning, perceptions of school belonging by culturally and linguistically diverse students, and issues of stigma and discrimination for culturally and linguistically diverse families and students. She recently co-authored several articles including “Lessons Learned from Service-Learning: Preparing Professionals Through Community Involvement” (Alvarez McHatton & Thomas, 2006), published in Mentoring and Tutoring: Partnership in Learning and “Stigma and Discrimination: Perspectives from Mexican and Puerto Rican Mothers of Children with Disabilities” (Alvarez McHatton & Correa, 2005), published in Topics in Early Childhood Special Education.
  • Elizabeth Shaunessy
    University of South Florida
    E-mail Author
    ELIZABETH SHAUNESSY, Ph.D., NBCT, is an Assistant Professor in the Department of Special Education, and serves as the Coordinator of the Gifted Education Program at the University of South Florida, where she teaches courses in gifted education. Her research interests include issues of diversity in gifted education, social-emotional needs of gifted students, and technology in gifted education, and public policy in gifted education. She recently co-authored several articles, including “School Functioning and Psychological Well-Being of International Baccalaureate and General Education Students: A Preliminary Examination,” (Shaunessy, Suldo, Hardesty, & Shaffer, 2006), which was published in the Journal of Secondary Gifted Education, and “Preparing Teachers of the Gifted to Address Social-Emotional Needs of Gifted Students: A Web-Based Course,” (Gill & Shaunessy, 2006), which was published in Informing Faculty.
 
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