Are You Talking About My Kid? Down syndrome

Today we talked to Lily's Sunday school class about Down syndrome.  We didn't dwell on the past or on future.  We talked about what it is and what it means for Lily now.  We talked a little bit about science and hopefully gave the other kids a chance to try on some of Lily's challenges for a few minutes in a fun way.  The children were curious, interested, honest, and completely without guile.

I hope you will talk about my kid.

I'm posting the lesson here in hopes it will help you talk to your children about Down Syndrome. 

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Bring:

Paper, pencils, chalk, coloring book, marshmallows, goldfish, gloves, weights,  laptop w/photo album of Lily doing a variety of things

Prayer

Sing – I Am A Child of God

Who in this classroom is a child of God?

(all of us)

Before we came to this world, we lived with Him and if we keep trying to obey His commandments, we’ll live with Him again someday.  But for now, we live here on earth and it’s pretty great.  One of the cool things is that we all get bodies that are made to look like God’s body.  We are His children so, of course, we look like Him.

                                                                                                                                                                                      What are some of the ways we are the same?

(emotions, eyes, mouth, nose, hands, legs, teeth…)

But we’re not exactly alike.                           

What are some of the ways we are different? 

(hair color, eye color, skin color, siblings, height, boy, girl, skills)    

What are some of the things that make Lily different?  (Actual comments:  She's short.  She walks like a penguin -Lilys said, "I'm not a penguin!", She talks like a toddler, etc.)

If you’ve noticed Lily is different, you’re right.  Today we’re going to talk about why she is different and how she is the same.  Lily was born with Down syndrome.

What is Down syndrome?

Let’s get fancy:  chalk drawing   Cell – chromosome –gene

Our bodies are made out of teeny, tiny cells.  Inside each cell there are genes.  There is a lot scientists don’t know about genes, but we do know we each have about 25,000 of them!  These genes are packaged into bundles called chromosomes.  Most humans have 23 pairs (sets) of chromosomes.  These chromosomes give your body information about how to grow; whether you will be a boy or a girl, tall or short, dark skinned or freckled.

Chromosomes: 

Chromosomes are the parts of our cells that carry genes.  Genes provide the information that decides the details about us – our hair color, how tall we are, whether or not we like cilantro…

Pass each child a copy of DS coloring book and read pages 4-9 describing cells, genes, and chromosomes

Some people have an extra set of Chromosomes; 47 instead of 46.  When a body had 47 instead of 46 chromosomes, it is called Down syndrome.  It is a condition people are born with.  Lily was born with Down syndrome.  It isn’t contagious, and Lily won’t grow out of it.  I just happens because of an extra chromosome.  All that extra information makes some things, like walking, talking, reading, and writing harder to do.  When things are harder, it may take more effort and more time to get really good at those things.

Here’s another way of describing it: (from Denver Post Mini-Pages)

 

Suppose you’re making sugar cookies.  You use flour, sugar, butter and other ingredients to make the cookies.  But if you add chocolate chips to the batter, you won’t have sugar cookies anymore.  All the cookies will have chocolate chips – you can’t take them out.  When that extra chromosome gets added in, it changes almost every cell of the body, just like the chocolate chips show up in every cookie.  You still have a cookie, but it’s a little bit different.

Lily’s spirit is perfect and pure just like yours, but the extra chromosome in her body also makes her different.

I won’t show you pictures from Lily’s whole life, but I brought an album of photos of Lily from this past year so you can see some of the things she does and enjoys.

Show album – swimming, hiking, sailing, hanging out with friends, making cookie dough, eating pizza, talking on the phone, at the playground, drawing, reading, doing school work, playing instruments, making silly faces, ballet, riding a horse, collecting eggs, at a bonfire, getting her face painted, playing with a puppy, at the library, etc.
Note - There is a picture of Lily with her younger cousin who also has Down syndrome/Trisomy 21.  I mentioned that he had some health issues at first and needed help breathing.  That extra chromosome can affect each person differently.  Lily hasn't had any medical issues related to DS.  

What are some of the things that are the same about Lily? 

(some actual comments:  We both like coca-cola.  We’re both photogenic.  We both like swimming.  We both like dancing…)

Just like you, Lily likes to do lots of different things.  Just like you, Lily has feelings.

Just like you, Lily learned to walk and talk.  She got some extra help to practice making the different sounds.  She will keep getting better at it.  She had to wear weights strapped to her ankles and practice climbing stairs and hills.  Now, she is really good at it and can even run, jump, and dance.

Just like you, Lily is learning to read books and write.  She will keep getting better at it.

I want to help you imagine how tricky some of these things can be for Lily.  

Talking

Let’s practice talking.  Let me hear each of you introduce yourself.  Say, “Hello.  My name is ­­­­­_______________.”  Now, try it with a mouth full of marshmallows. 

Lily’s words are getting better all the time, but if you don’t understand her, she will be happy to repeat herself.  Or if she doesn’t say a word quite right, she is happy for you to help her say it correctly and she’ll try again.  She wants you to understand what she is saying.

Writing – fine motor skills

Next, let’s try writing our names and eating a snack. Let’s try it with Lily’s Dad’s big gloves on.  (Pencil and paper for each kid to write their name).

With the gloves on, try getting a few goldfish out of the bowl and putting them into your mouth.

Even though it is tricky for her, Lily is learning to write her name.  She is learning to read. 

Moving the body – gross motor skills

It is tricky for Lily to learn to move her body.  Try holding a weight in only one hand and notice how much more difficult it is to move that arm.

Have you noticed some things that are tricky for Lily? (talking, sitting still, not touching other people’s stuff, not touching other people, paying attention, needs repeat or reminders, speaking smoothly…)

Some things are really easy for Lily.

Have you noticed some things that Lily is really good at? (SUPER flexible, pranks, volunteering, forgiving, showing love, good friend, hugs, kicking soccer ball, climbing)

Something Lily doesn't like is being left out or left behind.  Nobody likes that.

                                                                

You are each a precious child of God.  He loves you.  Your parents love you.  Heavenly Father has asked us to love each other, too.  When Lily is bothering you can kindly say, “Please stop ­­­____” or  “That’s not okay.”  You can be a good friend to Lily by saying hello.  She LOVES it when you say hello.  It makes her feel SO good.  You can be a good friend to Lily by asking her about what she likes, by being patient, and by inviting her to play here at church or anywhere. 

Do you have any questions about what Lily likes?  (books, games, movies, foods, playgrounds, places to visit, songs…)

Do you have any other questions?

I know Lily cares about each of you.  She knows all of your names.  She talks about you at our house.  Sometimes she prays for you.  She is always excited to come to Primary and see you.  Thank you for being a good friend to Lily.

Prayer