Tag Archives: down syndrome

Singing Samples

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Singing Samples

The following five recordings are not folklore. These are video and audio recordings sent in by parents of either their children or them singing to their children.

Informant Information:

Mary Kate resides in Andover, Massachusetts. She has a daughter who has an undiagnosed developmental disorder. Her daughter is nine years old and participates in the” My Own Voice” choir, a choir for children with special needs in Andover.

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.

Linda is from North Reading, Massachusetts. She has a thirteen year old son with autism who has been in the “My Own Voice” choir since its very founding four years ago.

Type of Lore: Not Applicable

Language: English

Country of Origin: United States of America

Social/Cultural Context: 

The following recordings show how music is used in typical home life for these children and their families. The first demonstrates a mother singing her daughter to sleep, a lullaby is not an uncommon practice, but typically is not performed when the child is nine years old. The singing of the lullaby helps Mary Kate to connect with her daughter, who is non-verbal. The second demonstrates a child singing to her mother before bed. This girl with Down Syndrome is able to use the music to express herself, which is typically difficult for her to do with conventional language. These two recordings share the aspect of being popular songs.

The last three recordings are of Linda’s son, he over the years has found a way to express himself through songs that he writes himself. They do not have particularly advanced tunes or lyrics, but it allows him to be creative with his own thoughts when typical communication is difficult.

Sample 1: Mary Kate singing her daughter to sleep (2016)

Sample 2: Pam’s daughter singing to her at bedtime (2016)

Sample 3: Linda’s son experimenting with Rap part 1 (2014)

 

Sample 4: Linda’s son experimenting with Rap part 2 (2014)

 

Sample 5: Linda’s son’s Mother’s Day video (2016)

Collector’s comments:

While as we said before these videos are not recordings of folklore, we think that these exhibit very important examples of these children trying to both make sense of their surroundings and communicate in their own individual ways. This is especially seen in the last three clips. These videos were taken a few years apart, and it is apparent how much progress that Linda’s son has made in creating his songs. The last clip is especially touching, it is a song that Linda’s son wrote for her for Mother’s Day, a truly unique gift that he made in an attempt to express his gratitude for her.

Tags/Keywords: Special Needs, Autism, Down Syndrome, Music, Songs, Sleep, Communication, Family

Story 4: “Support Networks”

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Support Networks

Informant Information:

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

Type of Lore: Not Applicable

Language: English

Country of Origin: United States of America

Social/Cultural Context: This story again is not folklore, but it is a touching story about the kinds of support that newly special needs family receive upon learning of a diagnosis from friends, family and providers.

Informant Comments:

When I found out [my daughter] had Down Syndrome I was 18 weeks pregnant.

I had an ultra sound that showed a heart defect.  I had an amnio that day. A few days later we got the news that [she] had Trisomy 21.

I reached out to two friends I had that had siblings with Down Syndrome.

They were both very positive and loved their siblings very much.

They had both lost their sibling with DS from illness. One from a heart defect that could not be repaired at the time he was born. They can now repair that heart defect😊

That friend said to me ” I won’t judge you but I know you will love that baby”. She also told me about how her brother with DS cheered her up when she was a teenager crying or upset about silly teenage stuff.

The other friend told me also about fond childhood memories of her sister with DS.

When I told a man on the board I am on (Board of Assessors), he said ” I have a cousin with DS. She always played with us just like my other cousins”.

[My daughter] is 15 years old , but those are the supportive responses I remember the most😊

I could not forget to mention Dr Allen Crocker at Childrens Hospital Boston.

He was a strong advocate for Children with Down Syndrome.

He met with us prenatal and spoke ok the positive things we would experience . He said we would never have to worry about drinking or drug abuse issues 😊

 

Best Regards,

Cathy

Collector’s Comments: 

We know that this is not folklore because this story involves individuals talking about other individuals in their families, but we do believe that it is significant how other people were so forthcoming with their stories of support and stories of their own siblings and experiences with the disorder. There is a theme in this of how people stressed the attributes of their family members that conveyed how those members of their family experienced many things as typical children do; all families face challenges with their children, those with special needs just have a different set of problems than most.

Tags/Keywords: Special Needs, Children, Down Syndrome, Story, Expectations, Health, Support

Story 1: “Following Instructions”

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“Following Instructions”

Informant Information: 

Terry has a son who has Down Syndrome. He is twenty 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: Not Applicable

Language: English

Country of Origin: United States of America

Social/Cultural Context: Little stories such as these are shared often throughout the community, similar to how parents share mishaps regarding their typical children as well. These are often given as cautionary tales.

Informant Comments: 

Dear Angelina,

So nice to hear from you!  We were in the process of packing up to move when we received your email telling us about the project you are working on.  We have been in our new home just over one week and this is the first time I am opening and responding to them.  

What a fun project!  So, Brian and I were just talking about how Joshua has viewed or understood a particular thing and we recalled a time when:

[He] was, maybe, 10 years old, and he had his first Gameboy and was playing Ratatouille.  He was mixing together all the ingredients for the recipe needed for the game and putting it into a baking pan.  Well, next, it needed to be “cooked”. The Gameboy, along with the game of Ratatouille, recipe ready, was placed into the microwave and turned on for cooking!  How could we feel anything except, grateful that the only things that did not survive were the Gameboy and the microwave, and compassion for [our son], and a greater “SENSE” of humor.

Life can be taken too seriously.

We hope you will enjoy this little story.

Collector’s Comments: 

While this story is entertaining, we have determined that it is not folklore. This is a story about an individual child told by his mother. What is significant in the characteristic of this particular story, though, is how it all hinges on this child’s interpretation of instructions literally, which is a view of the world that many, many people with special needs share.

Tags/Keywords: Literal, Stories, Children, Special Needs, Down Syndrome

 

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