Because You Need to Buy Gifts for About 8 Million People.

Ya know what?  Raising a child with Down syndrome comes with challenges no one tells you about.

Like having a billion people (it went up between titling the post and making the graphic) to buy gifts for.

Ellie has....

Two physical education teachers
Two gymnastics teachers
One general education teacher
One classroom assistant
One special education teacher
One occupational therapist
One physical therapist
One speech and language therapist
One respite care provider
One regular babysitter
One art teacher
One music teacher
One Spanish teacher
One librarian


and a partridge in a pear tree.

Some of these people can get a card and candy and I can call it good.

But not all.

So here's my gift guide.  Many these products are Noonday Collection, which I'm an Independent Ambassador for.  Some are affiliate links.  Some are just awesome.

Teachers, classroom assistants and other people who get significant gifts.

Noonday Collection Flora Jewelry Roll

If you know they put up a tree, this garland is so fun!

Noonday Collection Festive Paper Bead Garland

And for the guys or those who aren't into jewelry and cute accessories?

Carmen's Chocolates has lots of goodies!


For those gifts you have to buy en masse?

The Clustered Bead Bracelet is $12.  One friend bought five.  Done.

Or the Funky Paper Bead Bracelet, for your funky service providers.

Sweet Heat Jams.... so fun!  (h/t Meriah!)

For your nanny or someone SUPER special.

This bag... Noonday Collection Great Escape Bag.

A really, really big gift card.

To make it super special, a photo book.


You know your providers.  And these gifts are great, but the BEST addition to any of them is a thank you note and something your child made them!
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{31 for 21} Runner.

I like running.  I really, really like running.

I'm running a 5K in a few weeks.  Ellie is doing the 1K kids race.  She asked if we could go running after school to "practice running for the kids race!"  Her teacher asked me about it - despite a downpour, Ellie had confidently announced her plans to go running after school.

So we ran.

{31 for 21} Just Because.

Some old favorite Ellie photos!

{31 for 21} All About Ellie.

VIDEO!!!!  The Shine Box is basically an "about me" project Ellie is working on for school.

Shine box part 1

A video posted by Megan Landmeier (@meganlando) on Oct 12, 2016 at 4:46am PDT

Shine box part 2

A video posted by Megan Landmeier (@meganlando) on Oct 12, 2016 at 4:46am PDT

{31 for 21} "The Farm"

Ellie had Parent-Teacher conference days on Thursday and Friday, meaning no school for kids.  On Friday, we had an early morning conference with her teacher and then went on a "Girls Only" adventure to the Leesburg Animal Park.

I wanted fall and pumpkins.  Ellie wanted petting zoo.  I wanted not crowded since I was taking both kids alone while Daddy worked.  Caroline didn't get an opinion.

I admit, I was not encouraged at first when all the disabled parking was blocked off for the season.  I asked a manager because I thought the employee directing parking just didn't know where to direct me, but she was correct - there was no disabled parking.  The manager was very responsive and fixed the situation with designated spaces by the time we left, so I got my advocacy done for the day.

The experience was great.  Along with feeding animals (slobbery sheep, slobbery goats, slobbery llamas) there were bounce houses and a giant slide.  I was shocked when Ellie wanted to do the slide, but she loved it!  The girls played together in a bounce house until I pulled Caroline out.  Despite it being a safety move as more big kids arrived, Caroline was not having it and had to be literally wrestled into the Ergo!

We went for a hayride that featured giant fake snakes and real zebras, we met some camels and took selfies with them (of course), and we saw lots of festive fall pumpkins!

I only took my phone for a camera.

This post isn't really about Down syndrome, but it's a good glimpse into life with Ellie!

{31 for 21} School.

Ellie's Parent-Teacher Conference was Friday morning.  As she gets older, I'm sharing a bit less, but this is all stuff we share with her.  She sat in on most of the conference.

Some highlights/lowlights....

* Ellie is in the highest reading group.
* Ellie's writing has lots of room for improvement.
* Ellie's team is working to find a way for Ellie to show what she knows about spelling and sight words that is not strictly printing.
* The writing demands of the highest reading group are significantly above Ellie's ability, but her reading skills are on par with her peers.  Hence the point above.
* Math is harder than reading for Ellie.
* Friendships are forming between Ellie and her peers.
* Ellie is learning to nicely say "please let me do it myself," instead of knocking someone's hand away and yelling.
* Ellie is extroverted.
* Ellie knows everyone at school.
* In speech class, Ellie is demonstrating LOTS of personality.

{31 for 21} Favorites - Toys Over the Years.

Now that Ellie is "big" and five and in Kindergarten, parents of younger kids often ask me what we did to work on various skills.  This happens most often on Instagram, where people want to know how this or that toy or book has helped and where it can be purchased.

So here are some old and new favorites in our house, grouped by skill.  I'm also offering comments on how we used the toys with Ellie.  I did a separate post about reading.  This is just products that have worked for us.  These are affiliate links, and I also list if there's other shopping options I've tried.  How we used the products is far more important than the specific product.  Keep reading to learn more.

Gross Motor

We used the easel for both fine and gross motor.  There's certainly other brands.  The Melissa and Doug is super sturdy.  We ended up with a less expensive brand, but I wish I'd picked one with a whiteboard on one side.  Obviously, this is a fine motor toy too, but it really helped Ellie work on standing.

BOTTOM LINE: Play that must be done while standing helps kids balance.

Fine Motor/Working Memory

WARNING: This is the most annoying book in the world, but it helped Ellie learn to turn pages.  It was her favorite at age two.  She's five.  I can still sing the songs.  You've been warned.

BOTTOM LINE: Tabbed pages and high interest books are awesome.


Santa got this for Ellie last year because Santa knows that working memory is an important skill for children with Down syndrome.  Santa knows that pictures of family and friends are super engaging.  And Santa knows that flipping cards is good fine motor work.  Santa also suggests ordering this early for holidays because it's customized and therefore isn't Amazon Prime Now.  (How did we shop before Prime?!)

BOTTOM LINE: Memory Games work on working memory.  Pick one that interests your kid.


These flashcards come up on Zulily under their special needs and reading collections fairly frequently.  They're cheaper there, but you have to pay shipping, so shop around.  I got these because they're similar to the Montessori sandpaper letters.

BOTTOM LINE: Tactile!  Multi-sensory!  Use play dough to make letters.  Or get other textured flashcards.  Or make them. 

Speech/Imagination/Pretend Play



Matt likes birdwatching.  While I'm not sure that Ellie has ever used her binoculars to look at an actual bird, she loves talking about the birds she "sees" with them, even inside the house.

BOTTOM LINE: Pretend play!  Tools!  Kid cameras!  Something where they can do a real job!



We replaced this with a bigger kid dollhouse a few years ago, but this was our first one and Caroline now plays with the doll family.  (Well, with what's left of the family after a several years.)  A dollhouse, a toy firehouse, action figures or toy animals all call for pretend play, recited lines, etc.  "Hi, I'm Mommy.  What do you want to play?"

BOTTOM LINE: Pretend play is the best!

My assistant and I are making crock pot applesauce. Don't tell her, but it's to hide her least favorite medicine.

A video posted by Megan Landmeier (@meganlando) on Sep 4, 2015 at 11:42am PDT

And some other ideas...

COOKING!  So good for fine motor!  (And I got to post this cute old video!)

DRAWING! So good for fine motor!

PLAY DOUGH! So good for fine motor!  Double dip by making your own - cooking + play dough.

{31 for 21} Milestones of a Different Kind.

If your child has a developmental delay, you tend to focus (or hyper focus) on certain milestones.

Walking.
Talking.
Writing.

It's a sad fact that those can get in the way of other, equally important milestones.

Like getting your ears pierced (age 5.5),

Being on the cover of a book (photo of Ellie around 8 months old)




(Couldn't find my own picture, but hey, you can click the photo and order the book!),

Watching the Cubs for the first time (4 months),

Visiting the beach for the first time (4.5 months),

Or getting a baby sister (4.5 years).

Those things matter to varying degrees, but they will probably prove more memorable for Ellie than the ages at which she hit traditional milestones.



*Aff. link

{31 for 21} Dreams.

One of the questions I was asked on Facebook was about me - how I felt about Ellie's diagnosis and how those feelings may have changed.  This is a post I wrote several years ago for another site, but it sums up my answers to those questions.

I adore holidays, and the Christmas season is a special favorite of mine.  My family celebrates both the traditional church Christmas and the American commercial Christmas, and I soak it all up from Halloween onward.

Ever since I was a little girl, I've loved the Nutcracker.  At some point, I began to assume that if I ever had a little girl of my own, she would be my Nutcracker partner in crime come the holiday season.

When I learned of Ellie's Down syndrome diagnosis, I thought that dream had died.  Would Ellie be able to appreciate the beauty of the dance, or even be able to understand the ballet?

From the time I was 11 weeks pregnant, I started giving up on dreams, modifying dreams, and fearing dreams.  Despite my high expectations for the baby I was carrying, my mind couldn't wrap around three things: Down syndrome, duodenal atresia, and heart defect.

Really, with all that, who can care about ballet?

One Saturday in December, I dressed my now two-year old Ellie in a tutu.  We drove to our community theater, and sat among a sell-out audience, and my baby girl came alive. 

"Yay Nutcwacker!"  

"Pwincess dancin!" 

"A TREE!"

She was excited and engaged.

When you get a prenatal Down syndrome diagnosis, you start to cross off dreams.  PhD?  Nope.  Doctor?  Nope.  Those are the easy dreams to give up.

But then, you start to give up on little dreams.  A girl who loves ballet?  Doubtful. A fun companion?  Can't hope for that.  A funny and likable individual?  Maybe if we're lucky.

Slowly, slowly, the dreams come back.  A funny and likable individual?  Absolutely.  A fun companion?  Usually.  

And a girl who loves ballet?  Oh, I have that.  

As the Non-Invasive Prenatal Tests (Harmony, MaterniT21 and the like) become more common, more families are learning about their child's extra chromosome before their friends even have heard the baby exists.

More families are giving up on dreams earlier, but they don't have to give up on their dreams.

What matters most for your child?  Happiness?  Participation in a faith community?  Passion for a family pastime?  A life-giving passion for…. something?

Those dreams are realistic.  Those dreams are good.  

{31 for 21} Reader.

I recently posted some videos on Instagram of Ellie reading.

She's reading at a pretty typical early kindergarten level.  (For my teacher friends, about at a DRA level 1.  I'm pretty sure she would dominate the DRA level A book and be instructional at a 1.)

So I must be magic, right?  Or use my amazing teacher skills to help my kid with Down syndrome read?

Not quite.

Here's what we've done from the start:

Baby - Age 2:

* Read a lot of books
* Use See and Learn for Vocabulary
* Point out environmental print (Words you see around - i.e., Cheerios)
* Pointed out letters
* Baby Signing Time DVDs

Age 2 - Age 4:

* Send Ellie to school
* Rachel and the Treeschoolers DVDs, Signing Time DVDs
* Listen to all the Dr. Jean songs and try to maintain calm
* Read lots of books
* Learn letters and sounds (thanks school!)
* Use letter flashcards to help with letter and sound ID
* Watch sight word videos on YouTube while doing hair each morning

Age 5:

* Kindergarten!  Yay!  Thanks, IEP team! (They do so much for Ellie.)
* Read Ellie's "Book Bag" books each day after school.
* Point out sight words while we read
* Let Ellie "read" challenging books she has memorized
* Touch under each word when we read


And we talk a lot.  To her, about her, podcasts, words, words, words.

But here's the thing.  This isn't prescriptive.  It's descriptive.  It's what works for Ellie with her strengths and weaknesses and interests.  So take it as my story and not what you should do, although you're welcome to try!  I just read a study about phoneme blending for kids with Down syndrome and I'll probably attempt to tackle some of that next!

Now with sound!

A video posted by Megan Landmeier (@meganlando) on Sep 23, 2016 at 1:19pm PDT

* Aff links.

{31 for 21} What to Tell Your Kids.

"What do you want other parents to tell their kids about Ellie?"

I love this question.  

Most of the questions about Ellie tend to be...

* Why does she look like that?  (Meaning different in some way kids can't quite explain.)

* Is she a baby?  (She's small.  Really small.  And needs extra help.)

* Why can't I understand her?

* Why does she look like ____?  (The other student in her class with Down syndrome, who also happens to wear glasses and be white.)

My answers to these and more:

Ellie has something called Down syndrome.  There are little tiny pieces of your body that tell your body who you are - what you look like, what to do.  Ellie has a little extra of these things called chromosomes.  (Obviously, this depends on age.)

Ellie was born with Down syndrome.  She had it while she was in her mommy's belly and she will have it her whole life.  You can't catch Down syndrome or get rid of it - either you were born with it or you weren't.  Ellie was born with it.

People with Down syndrome can look a little like each other and like their families, too.  A lot of kids with Down syndrome are kind of short and wear glasses like Ellie.  Ellie also looks a little like her sister.  

If you have Down syndrome, some things are harder.  Your muscles aren't ready all the time, so everything using muscles takes extra work.  And a LOT of things use muscles!  Talking, walking, running, writing... those things all take Ellie more work.  People with Down syndrome are also really flexible, so at gymnastics, things like straddles take Ellie LESS work.

Ellie might need extra help with some things and she can give extra help with some things, especially helping if someone is sad or hurt.  She helps take care of her baby sister, too.

Even though Ellie is little, if you help her, remember she's not a baby.  It makes her mad if you think she's a baby and she doesn't always have the words to explain that.

Ellie is also fun to play with.  She likes to play on the slide and read books and dress up with accessories.  She likes American Girl dolls and dance parties.

{31 for 21} Challenges

I recently put out a call for questions about Ellie or Down syndrome on Facebook.  One of my favorites was:

"Does Ellie have any challenges she notices?  What do you say to her about that?"

Yes.  Sort of.

Five is a fun age where competition and comparison are beginning but where some kids have high enough self esteem to ignore those things.

Ellie has trouble keeping up with peers physically and in games.  Sometimes she notices, but she doesn't seem to care yet.  I don't know how much she ever will care, because she is the least competitive person I've ever met in my life.

A couple examples:

Ellie is terrified of the water if it's deeper than her knees.  (And given her size, that's pretty shallow water!)  Matt came home from swimming with Caroline and shared that Caroline put her face in the water.  Ellie cheered and praised her sister. "Ellie, are you going to put your face in like Caroline?"  Ellie replied, "No, Caroline already did it!"

I was going for a run.  "Why you going running Mommy?" Ellie asked.  "Because I want to get faster."  "Why?"  "I have a race soon and I want to be in front."  "Um, okayyyyyy."

So Ellie doesn't seem to care much when things are hard for her.  She either tries really hard or totally gives up and finds something else to do.

We do talk about Down syndrome.  We talk about Ellie having Down syndrome like some of her friends.  We talk about how doing the straddle at gymnastics is easier for Ellie because of having Down syndrome, but some things are harder.

We've talked about Down syndrome from the time she was an infant.  We never, ever want her to be surprised that there is something "different" about her.  As a teacher, I've had students who do not know they are getting special help in reading and sixth graders who don't have any awareness of their disability.  I never want to put Ellie or her teachers in that position.

Instead, I want her to know that she might learn differently or need extra help to do the things she wants to do.  And she WILL learn but she might need to try extra hard.

At this point in her life, Ellie is proud to have Down syndrome and I pray that never changes.

{31 for 21} Quotable.

I used to do these quotable posts more frequently.  It's been awhile, so here are some recent gems of Ellie's, copied straight from my Facebook and going back into summer.

Me: I need to plug in my laptop. Ellie, can I please sit in your chair?
Ellie: No, but you may sit on the floor right here.

***

"CAROLINE! Do not MOVE! I'm brushing your hair!" (Violently. With a doll brush.)

***

"Little ones to him belong, they are weak but He is big."

***

Me: What book did your teacher read today?
Ellie: Llama Llama. But llama llama misses mama. But I don't. 

***

Ellie: this is my lucky hangnail and my lucky scrape because I got TWO bandaids!

***

"Curious mas fooda?"

Translation: ellie attempting to ask c if she wants food. In Spanish. Obviously.

***

Ellie: Are you old?
Me: No, I'm young and beautiful.
Ellie: No, you are OLD and beautiful!

***

Ellie: HOORAY HOORAY HOORAY! 
Me: use your inside voice
Ellie: but I'm loud and proud.

***

Me: Do you think Caroline will like the petting zoo at the buddy walk? 
Ellie: Yeah
Me: She might want to pet the little animals
Ellie: Yeah! Like an otter!!!

***

Regardless of political affiliation, I think a woman being nominated by a major party is a big deal. So I turned on the DNC coverage. 

"Ellie, watch, this is important."
"Why?"
"Because it's almost time to pick a new president and our new president might be a girl. So far it's been all boys."  
Ellie looks at my phone (live steaming.) "There's a girl. There's a boy."
"Yep but those aren't the girls who might be president."
"Mommy, why is that lady speaking?.... Can we watch something good?"

Appreciation for history, right here folks.

***

E: Mommy, can I please have a treat?
Me: Didn't you already have a popsicle AND ice cream?
E: Yeah, so I want ANOTHER treat.
Me: Laugh
E: Do not laugh that I want a treat.

{31 for 21} Buddy Walk.

I'll try to share more photos later in the month.  I have a newborn and second birthday session to edit, and when I'm done, I'll be able to fully focus on the Buddy Walk photos.

In the meantime, enjoy.  The DSANV Buddy Walk exists to raise funds and awareness for people with Down syndrome in Northern VA.  We had a great walk today despite the misty weather.

And for the first time, Ellie walked the ENTIRE TIME!