Tag Archives: special needs

When You Thought I Wasn’t Looking

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When You Thought I Wasn’t Looking

Informant information:

Mike and Sue have a daughter who has autism. She is twenty years old and participates in the “My Own Voice” choir, a choir for children with special needs in Andover, Massachusetts.

Type of lore: Customary

Genre: Tradition

Language: English

Country of Origin: United States of America

Social / Cultural Context: This poem is passed on to new members of the special needs community – these new members are family members of children who have been recently diagnosed. It is unique in it’s own way because it is meant to give the family a sense of what their child is feeling, because ascertaining that from a child who cannot speak is very difficult.

Poem:

“When You Thought I Wasn’t Looking”

When you thought I wasn’t looking, you hung my first painting on the refrigerator and I wanted to paint another.

When you thought I wasn’t looking, you fed a stray cat and I thought it was good to be kind to animals.

When you thought I wasn’t looking, you baked a birthday cake just for me and I knew that little things were special things.

When you thought I wasn’t looking, you kissed me at night and I felt loved.

When you thought I wasn’t looking, I saw tears come from your eyes, and I learned that sometimes we can cry.

When you thought I wasn’t looking, you smiled and it made me want to look that pretty too.

When you thought I wasn’t looking, you cared and I wanted to be everything I could be.

When you thought I wasn’t looking, I looked and I wanted to say thanks for all those things you did when you thought I wasn’t looking.

–Your special child

Informant’s comments:

 Hello Angelina,
We received an email from your mother about your project and thought we would send a few quick things along. Our 20 year old autistic daughter participates in rehearsals at “My Own Voice” but really can’t completely join in so she does not participate in the concerts. However, your mother is great and of course she welcomed Jamie with open arms and it has been a really good experience for [her]. [She] is verbal but really has no language so it is difficult for her  to get the whole concept of singing, etc. but she does enjoy being there.
Sorry we’re running late on getting it to you …..
There are two attachments: One is a little funny story that my wife always remembers [her] doing for a long time and the other is a poem I have hanging up in my office. It is a poem  that someone wrote that kind of sums up maybe what [she] is thinking since she can not articulate her thoughts.
Good Luck
Mike and Sue
Collector’s comments:
The poem that Mike and Sue sent us is particularly something we thought could be considered folklore. Once again, like “Welcome to Holland”, this poem serves to help the family transition into this new community and serves to remind parents of the impact their actions have on their child on a daily basis, even when it cannot be expressed.
Tags/Keywords: special needs, Autism, tradition, folklore, customary

 

 

 

Explaining Through Stories

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Explaining Through Stories

Informant information: 

Pam is from Andover, Massachusetts. She has a seven-year-old daughter with Down Syndrome who participates in the “My Own Voice” choir, a choir for children with special needs in Andover.

Type of lore: Customary

Language: English

Country of Origin: United States of America

Social / Cultural Context: This book is shared among parents of children with special needs when trying to decide how to explain a new baby’s special needs to their typical siblings. Therefore it is most often used when the family is first entering the special needs community.

Informant’s comments

Another book, I thought was very helpful in explaining Down Syndrome to my other kids was… “We’ll Paint the Octopus Red” by Stephanie Stuve-Bodeen

It is a story about how a family is expecting a baby, and the older sister is all excited to do all these fun things with the new baby ( go to the beach, visit grandma, sing, paint, dance, love, play kickball etc). But after the baby is born the parents are crying. The little girl asks what is wrong? The Dad explains that the baby, little Isaac has Down syndrome. the girl says, ooh.. So does that mean the baby can’t play kickball with me? The dad says, it might take the baby a little longer to learn how to walk, but he could learn to play kickball. The little girl says, so baby Isaac won’t be able to ride in the minivan and eat fruit snacks with me, and the dad says I think he’ll be able to do that too.. Well then he won’t be able to go visit grandma and have sleepovers with me, and the dad says I think he would love to do that… So the little girl says, so if Isaac has this down thing then what can’t he do? And the dad says there actually probably isn’t anything that he can’t do.

We found the book helpful. And then it was a good conversation starter about what is Down syndrome… we explained it to our kids, how everyone when they are born are given a set of chromosomes, one set from your mom and one from your dad. And how these chromosomes are the directions that your body follows on everything, how to breathe, grow, the color of your eyes, if you will be a good singer etc.. And when [our daughter] was born she got one more chromosome then the rest of us… So she has more sets of directions to follow then us, and that is why it takes her longer to learn how to walk and talk and sing…

Collector’s comments:

The informant stated that the title of the book was “Let’s Paint the Octopus Red” but the title is actually “We’ll Paint the Octopus Red”

The book itself is not folklore since it has an author, and folklore is authorless by definition. However, we found that the shared behavior of using this book to explain Down Syndrome to children was a tradition shared between parents of children with special needs.

Tags/Keywords: special needs, Tradition, Down Syndrome, Folklore, Book, Story

 

The Holland Poem

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The Holland Poem

Informant information:

We received the same submission from 2 sources; both are listed below.

Pam has a daughter who has Down Syndrome. She is seven years old and participates in the “My Own Voice” choir, a choir for children with special needs in Andover, Massachusetts.

Diane has a son who also has Down Syndrome. He is twenty-five years old, and has been a member of the “My Own Voice” choir for several years now, and still participates. “My Own Voice” is a choir for children with special needs in Andover, Massachusetts.

Type of lore: Customary

Genre: Tradition

Language: English

Country of Origin: United States of America

Social / Cultural Context: This poem is passed on to new members of the special needs community by friends, families and even doctors. These new members are family members of children who have been recently diagnosed with various forms of special needs.

The Holland Poem:

“Welcome To Holland”

by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Informant’s Comments:

Pam’s Submission:

Hi Angelina,

My name is Pam, I have a 7 year old daughter with Down Syndrome who participates in the “My Own Voice” choir.  My husband and I were trying to think of something specific to tell you but I’m not sure how insightful we can be…  I figured you already have the Holland poem ( and your mom said you already have it).  but I know that poem was very helpful to me, and has allowed me to put a lot of things in perspective. 

  The holland poem, rings true during all stages of life as well.  Not just as a baby, but a toddler on the playground or a high school kid going to the prom. Similar to the holland poem, is the folklore of everyone sitting in a circle  and they all throw their problems in the middle, and after seeing and hearing everyone’s issues, you would always want your own problems back…..Folklore being It is not as bad as you think… Maybe a humbling experience. 

Not sure if this is helpful or not.  I hope you are doing well at school and enjoying it all!  Wishing you luck on your presentation.  

Kindly, 

Pam

Diane’s Submission:

Hi Angelina, What a great assignment, and of course, we would love to help you out.  I hope my contribution is relevant and helps …  Take care, Diane
The day after [my child] was born, we received a beautiful teddy bear from my aunt with a framed poem inside the gift bag.  The name of the poem was “Welcome to Holland” written by Emily Perl Kingsley (see link below).  From day one, it had a very profound effect on me.  I read it daily for at least the first year of [his] life, and it served as my own personal support message as we learned about his disability, Down syndrome; and subsequently, grew to love and appreciate him more and more each day.  We think [he] is funny, cute as a button, mischievous as all get out, totally awesome, and of course, lights up a room like a huge vase of tulips!

Collector’s comments:

While “Welcome to Holland” itself is a literary text because it is a poem with an author, the act of giving this poem to others is folklore – it is a tradition. Moreover, it can also be considered similar to an initiation ritual – the family is being initiated into the special needs community, and the act of giving them this poem is very similar to rites of transition, because they aim at helping  this family transition into this new community/phase of their life.

Tags/Keywords: special needs, tradition, customary, poetry