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. 

                           *****************************************************

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

Does Your Dream Make You Puke?

In four days we'll be stuffing our duffles and catching a jet stream to our new abode, a catamaran named Fezywig.  We have a new website to go with it.  We'll mostly be hanging out here for awhile: 

 www.Fezywig.com  

Change is fast, but transition is slow and things rarely go as we expect.  This unlikely dream journey is already six years old.  My Hero wanted to sail, so when a friendly visitor at church offered to captain a daysail on his own little sailboat, My Hero jumped.  What did he care ladies were the target audience?  He puked four times that day (it was not the ham sandwich) and couldn't wait to get back out there.  Temporarily taking on a second part-time job, he signed four of us up for bi-weekly afternoon sailing lessons in New York Harbor, one of the busiest waterways on the Hudson.  The excitement of sailing by the Statue of Liberty was lost on three nauseous sailors.  Two of them planted their warm faces on the cool deck of the J-24 and begged to end the lesson early.  As it turns out, I'm not prone to sea sickness.  Phew!  We kept coming back.  The queasies subsided.  We passed our certification exam.

1st instructor

We celebrated by sailing as a family, including the three young children who had never been aboard.  We rented a sailboat at Tom's River, just the seven of us.  Imagine the romantic setting as we launch into the cool blue waters, only one child clenched in an endless death-scream, as we join the jet skis, motor boats, and sailing vessels already skimming along.  What a jolly site.  A 6 month old in a sun bleached life vest and a Bumbo seat nursing undeterred by mother's equally buoyant life vest.  What is 10 inches of foam between mother and child?  Unfazed they are, by the screaming three year old trying to dig a bomb shelter with his face in mother's armpit.  The fearless seven year old clings to the deck as if she is perched on a slender oak branch 40 feet in the air repeating the soothing mantra, "I want to go home.  I want to go home.  I want to go home."  See how the friendly sailors wave and laugh as the family's boat keels two inches starboard and the entire family shrieks in unison racing to the other side of the boat, only to make it wobble to port.  And hear our cheery skipper's unfailing bark as he growls us all to order.  After an hour, the death scream subsides, but tossing pebbles from the riverbank is unanimously voted the favorite part of the day.  We temporarily reconsider this dream.

Tom's River smiles:  they look a little forced.

[Insert lots of other steps over multiple seasons including our favorite skipper sailing splitting rental costs with friends to get sail time, completing two courses in a couple's Caribbean week (NOT romantic), joining a sailing school so we could finally sail as a family for two years of weekly water, 3 days of chartered family puking in Florida, and test sailing a catamaran with friends (romantic after My Hero's non-stop mucous infection finally dried up).]

Pursuing this dream has been an arduous, delightful adventure already.  I'm not sure how many would have continued after such a foreboding start.  After a lifetime of mild aqua phobia, I was not seduced by the romance of the sea.  I proceeded purely out of love for My Hero.  Our skills increased.  It's funny how we never get worse at something.  Sailing became really fun.  This was partly because it's an outdoor water sport with a lot of wind, but also because we could gather up our children to ourselves.  We were often out of cell range.  We sat facing each other in the sunshine for three or four hours at a time.  We would talk, sing, shriek at the occasional steep angle and sea spray.  We would tack, jibe, and run man overboard drills.  We would navigate by map and keep a sharp eye out for buoys with praise heaped on the first scamp who could clearly read it's number and find it on the chart.  That focused time together felt slower and more wholesome than our average hours.  Memories remained more vibrant and distinct.  And I snorkeled.  Now, it's one of my favorite things.  It's still scary, but totally worth it.  What other favorites are hiding inside my fears?

A friend's unfiltered photo of the blue, blue Mediterranean amazed us.

I think My Hero started sailing inspired by the romantic notion of celestial navigation and big oceans connecting humanity through the centuries.  Then one day he said, "I think the seven of us on a boat would be enough universe to keep me engaged for the rest of my life."  If not those exact words, something darn close to that.  And that is the plank I walked to get onboard with this dream.  My vision is a vibrant loving family that works, plays, and explores together.  Home and Family are my watchwords.  My genius husband has figured out how meld our visions to stay home and to travel.  He is a big believer in both.  I swear, one day he will keel over dead from a Stroke of Brilliance!

Bottom Line:  If your dream makes you puke, carry on.  It's worth it.

Hubris at a Baptism

No surprises.  I saw this coming 8 years away, but when it finally arrived I made a bad call. 

Baptism

Family was joining us from various states.  Food was being prepared.  The building was reserved.  The jumpsuit was on hand.  We had practiced.  A towel had been embroidered with my son's name!  I can't believe I was so ridiculous and there is nothing I can do to retrieve what I missed.

Here's the deal.  One afternoon, I decided I was done with so much hair.  My husband walked in to find our 11 year old cutting one thick (I flatter myself) braid off at the nape of my neck.  Her older sisters have each had a swipe and I think it builds confidence to cut hair.  My Hero volunteered to shape it into an A-line bob for me.  Imagine the haircutting scene from Bourne Identity except with Jason shooing away bouncy children who are trying to step in the hair.  I've sworn not to show any actually photos.  Too sexy.  

It was My Hero's first time cutting my hair and he did a bang-up job.  After taking some selfies and checking it out in the mirror, I thought it might be cool to have someone finesse it a teensy bit.  Maybe blend the layers vertically.  My artistically gifted sister would be at the baptism, so I asked her to meet me an hour early for some tress touch up.  She agreed.  I was late.

Let's just say, our friends and family were greeted with the cries of one of the world's most adorable babies who really wanted to be with her attentive mother instead of waiting in the hall.  All my fault.  My sweet, patient sister.  She appeared calm throughout.  I'm sorry that I pulled her into my crazy haircut scheme even though she did an beautiful job out of the love in her tender heart.  

Let's also just say that everyone was in their seats 5 minutes before the service.  Apparently, that is the difference between D.C. and NYC where you get a 15 minute grace period.  At any rate, I was conducting the meeting (which I had planned 6 weeks out incorporating songs and speakers of my boy's choosing, but which I hurriedly wrote from memory on a piece of scrap paper).  I was also giving a talk.  Basically, I walked in 5 minutes late, went straight to the front of the room to start the meeting and everyone there knew full well I had just walked out of a mobile salon.  Silly.

Awesome friend.  Awesome haircut.  Occasionally lame mom.

I completely missed taking it slow.  I didn't personally greet our friends as they arrived.  I didn't get that calm feeling of preparation despite having otherwise earned it.  I didn't get to give my boy a hug or whisper any private words of love and encouragement.  I didn't exchange warm pleased glances with my husband.  I didn't get to watch my boy interact with his cousins and friends in his little white jumpsuit as he awaited the biggest moment yet in his young life.  I didn't get to be in any pictures with aforementioned jumpsuit.  In fact, only a couple of hurried blurry pictures were taken at all.  I've said before that special times need space.  My son had a fabulous time and he may not remember that day when he's an adult (especially without pictures).  The water was colder than he expected.  He felt good about his choice.  He exited the water into the dressing room and sang, "I'm baptized now!"  But I would have remembered and I can't remember what I didn't experience.  Sad face.

Some cousins

I'll get another chance to do things right.  There will be other special occasions to celebrate.  This is my reminder not to over schedule.  Special times need space. 

On the plus side, we had ukelele duets, three kinds of meat and five kinds of dessert, and a five year old streaker during dinner.  Also, my six year old showcased her fine motor skills by sneaking into the restroom, getting into my Ikea event bag, unzipping the hair clippers, and snipping herself, what I call with affection, the quarter mullet.  Occasionally lame, but generally awesome.

"Mullet Maven"

P.S. I'm sorry if my British punctuation outside the marks bothers you.  It makes me feel fancy.

Young Womanhood Recognition Award

I'm in the Eagle Scout Award (ESA) invitation demographic.  My only boy is 8, but the oldest of my four daughters is 16.  Attending an ESA ceremony lifts my soul.  I've seen the ambition, determination, goodness, and sacrifice of these youth.  I've participated in some of their projects.  My son is impressed.  He can't wait to become an "evil scout."  (Just kidding.  I cleared that up right away.)  I am impressed.  Their efforts should be celebrated and their examples should inspire us.  I want that level of recognition for young women when they complete the Personal Progress requirements for a Young Womanhood Recognition Award (YWRA).  I'm not saying these two awards are equivalents.  I'm saying I want to encourage these values and these goals, so…

When my daughter was ready to receive her YWRA, I threw a celebration and invited everyone!

This was the first such award in nearly 10 years for our ward, so we had no traditions.  This post is 3 months late, but I was searching for something like this when planning our event and couldn't find anything.

I would like young women to feel the significance and value of their accomplishments in completing all the requirements for a YWRA*.   

So many people volunteered to help out or bring food.  I never even made a request.  People were excited to join in.

I would like our girls to have an opportunity to teach, impress, and inspire us all.  

Pinterest will not be featuring my handiwork anytime soon, but these were fun.

I want to show them that what they have achieved is worth celebrating.  I want to hold them up as examples, especially to our 8-11 year old girls.  

Karina made that garland by tracing actual leaves, cutting them from cardboard, and adding veins with white chalk.  Pinterest may be featuring her soon.  She is creative.

I want our congregations and communities aware of all the good these amazing girls are up to.  

Amazing community!  Out of town family, neighbors, and how many males do you count?

While completing the "program" is not the main point and many wonderful girls choose not to, those who do should be feted.  It's a big deal.

Personal Progress is a marvelous program.  It has motivated my daughters to pursue excellence rather than procrastinate.  One of Karina's first value projects (10+ required hours) was to write and record an original song expressing her faith.  It was a lot of work and tech trouble-shooting as she wrote, recorded (all vocals and instruments), and then mixed that first song.  Since then she has gone on to write more than 20 original songs, record, perform, enter competitions, make some videos, and start a Youtube channel.  It may become her professional pursuit.  It is certainly an avenue for reflection and sharing.  Here is a song she wrote as a birthday gift to me about some special vacation time our family was blessed to share in Cape Cod.  She shared this at her YWRA to illustrate individual growth inspired by goals set for the Personal Progress program.

FYI the details (because I couldn't find any templates for this event when I googled it):

The program included:  Opening hymn,  opening prayer, congregational recitation of the YW theme led by youth president, brief explanation of the Personal Progress program by YW counselor, Bishop brief remarks and presentation of the award because he is a personal friend -counselor could do this, YW president brief remarks on the young woman's growth through the program, musical presentation (this girl is very musical),  and a video montage of her growth in the past 4 years (3 min.), brief remarks by the young woman about her personal growth and most meaningful projects, closing hymn, prayer, refreshments in the gym cultural hall.  = 45 min.

Very much like an ESA ceremony, the parents were responsible for sending out invitations, arranging refreshments, creating a program, and inviting speakers.  Ward leadership volunteered to reserve the rooms, and agreed to speak when asked.  The presentation lasted about 45 minutes.  It was inspiring to see the young women and their parents as well as siblings, friends, extended family, neighbors, and even young men gathering to celebrate and recognize the achievements of a young woman.  This format could easily accommodate multiple young women, but this was the first YWRA in more than 10 years in our ward.  Some other girls are getting close!

*The YW auxiliary generally sponsors 2 annual celebrations.  One to start the year and welcome new girls.  One to recognize accomplishments achieved that year.  In my experience, these events are for family and usually just parents (not siblings) because a dinner is often provided and the budget must be considered.  Occasionally, I've heard of congregations being included in these recognition events.  That's great.  Unlike an ESA, it isn't generally open to extended family, school mates, teachers, friends, neighbors.  Why?

Best Chocolate Fudge Cake  I've ever tasted.

I Don't Want to Be More Awesome

Happy New Year!!!  

Me, Karina, Alison, Erik (My Hero)

I set goals and intentions whenever I feel like it.  I know.  I'm a maverick.  This year we happen to be making big changes in January.  We are switching locations and lifestyles.  We are temporarily swapping out a small apartment on an island for an even smaller floating home (read:  boat)  in the Caribbean.*  A dramatic shake-up is not required to make changes or set new intentions, but I'm hoping to capitalize on this opportunity to reconsider some of my personal patterns and move forward deliberately.  These quotes/post links are compass points for the direction I hope to travel in the next decade.

"I don't want to be more awesome.  I just want to be."

or

"Just because I could do something, doesn't mean I should."

*more on that later

No Crankypants for Christmas

Dear Self,

Even though you read several blog posts about chilling out for Christmas, you were a Crankypants all season (except for a handful of choice moments...that almost all happened at church).  This is unacceptable.  Here are a few ideas to consider that will put the sparkle in your smile next year.

It looks like this

1.  It's not about you.  It's actually about Jesus Christ.  Remember that whole Grace thing?
     Best.  Gift.  Forever.  Meditate on that a little every day...all year long, even.
2.  Plan on it.  Christmas happens every year.  It's not a surprise.
3.  Pick 2-4 traditions you can commit to.  Adjust any tradition that adds more pressure than joy.
4.  Find out what the kids wish for around Halloween.
5.  Finish shopping by Thanksgiving (or some reasonable deadline).  Remember the year you did that?
     Remember how it was the best Christmas ever because you knew you were ready?  Remember how
     you could focus on the Savior and serving others?  Remember how much you enjoyed every
     concert, party, and all those quiet evenings peacefully watching a Youtube fire crackle because you
     knew you were ready?  Do that again.  It does help to coordinate with a friend and have dinner out together as
      a reward for your noble efforts.
6.  Be clear and direct about any expectations or support you would like from your husband.  He loves
     you.  He desires your happiness.  He cannot read your mind (which is a good thing because sometimes you 
      want to keep your thoughts to yourself, right?).  
7.  Get a grip!  Christmas is not out to crush you.  Take responsibility for your attitude.
8.  Create a Pinterest board for items you would actually like to receive for Christmas.  Seriously, not
     even your beloved soul-mate could guess some of the odd things you wish for.  Rumor has it, the
     kids would love some hints as well.  I know it's not your style.  Just consider it.
9.  Grace for you!  Grace for everyone!  See item 1.

P.S.  In the future, avoid planning and executing an international move during the holidays.  

        Special times need space.

Live Nativity

Maybe you've seen those t-shirt of the Nativity with a speech bubble which says, "It's a girl!"  That's not my personal belief, but 14 years ago our daughter, Alison, portrayed the holy infant.  She's got range.  Karina, our oldest child, was a shepherdess.  

Bethlehem was created by a professional scenic designer and onlookers stopped on the city streets to peer through glass at the scene.  Half the time, they saw an empty manger and no Mary because public breastfeeding wasn't quite the rage in 1999 that it is today, so we hit the semi-private stairwell for hungry time.

 It was a warm and wonderful experience, the highlight of our first Christmas in New York City.  We loved being together, wearing loose comfortable clothing, and focusing on that tiny new family as a family.  The vision was that a live nativity featuring a precious real infant would inspire reflection on the reality of the Savior's birth and life.  When our shift was over, we felt so peaceful that we didn't want to leave.

That ancient experience led directly to an opportunity to create a live nativity at our church in 2013.  While I have no trouble dressing up and holding a baby, I have never created a theatrical anything.  I was really nervous about how it would come together with no professionals, no budget, and me at the helm.  Not a peaceful feeling.

No budget = representational theatre

Some of the willing souls who made this miracle happen.

In the end, it did feel peaceful.  Even though I was making it up as I went along, even though we only had two wise men, even though little boys were running through the halls screaming about mistletoe...I did want it to go on and others seemed to feel it, too.  Contemplating this clutch of willing players, I knew for certain that Heavenly Father is just as mindful of me and my family, and you and your family, as He ever was of the holy family.  

That made my Christmas merry.