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} Favorite Tools and Tricks.

When it comes to learning activities for Ellie, I have tried almost everything.  As a special education and elementary school teacher, I own a lot of this stuff and owned much of it before Ellie was born!

Math:

Junior Learning Rainbow Numbers Magnetic Set - We use this to work on number sense and matching digits to the number of dots.

Reading and Math:

Everything from DSFOC.  Seriously.  Click here.  You have to make an account but they don't spam you at all.  It all includes directions.  I love this stuff and use it with students who benefit from a visual approach.

Here's Ellie "reading" a book she sort of memorized.  (She had it memorized it and outgrew it.  Now she's "reading" to sister.  She has the gist of it right but not all the words.  It should be "A cow says moo.  A sheep says baa.  Three singing pigs say LA LA LA.  No no you say.  That isn't right.  The pigs say OINK all day and night.")

A video posted by Megan Landmeier (@meganlando) on Sep 30, 2015 at 4:00pm PDT

Reading:

See and Learn is one of my favorites, although we've fallen off that track a bit after Ellie learned the vocabulary.  She never did sight reading with these cards, mostly because we got busy.

For learning letter sounds, it's super annoying, but google "Dr. Jean."  Ellie loves every song and knows her sounds.  Awesome, right?  Now go buy earplugs.

Speech:

This is what I get asked about most frequently because Ellie has great speech for a kid with Down syndrome.  I also have the least number of speech tips and tricks.  Ready?

What worked for Ellie?
* Go to preschool.
* Have great Early Intervention.
* Have a mommy who talks a lot.
* Have a natural strength in speech.
* Read a lot of books.

What tools do you love?

A Guest Post: Ms. Lisa, Ellie's Speech Therapist

Of the questions I get on this blog and Instagram, the most common questions are about speech.  Ellie speaks fairly well for a kid with Down syndrome. While we worked hard with her, I'm fairly certain that her natural giftedness plays a big role in her non-stop chatter.

I've also received a fair number of queries about which "program" Ellie uses.  I'm a big believer in traditional early intervention therapies, and we hit the jackpot with our therapists.  While the official relationship with Ellie's first therapists ended when she entered school, I've stayed in touch with all of them.

I got this crazy idea that Ms. Lisa should be the one to tell you about Ellie's speech, since she's a professional speech therapist and I'm a mom with a special ed certification.

And then, I ran into Lisa and totally suckered her into this.  So a huge, huge THANK YOU to Lisa for being awesome even though her official reign as Ellie's SLP ended a year ago. 

First I will start by saying I’m excited to be sharing some tips and tricks with everyone here.  When Megan and I ran into each other a few weeks back and she asked me to do a guest post I laughed and said “sure,” secretly hoping that she never would ask again.  Well, she did and because Megan always took such good care of me when I worked with Ellie, I thought I better hold up my end of the deal.  

Being an Early Intervention therapist has been one of the best learning experiences of my professional career to date.  Having families welcome me into their homes to take part in supporting the growth of their child is an honor that makes my job incredibly rewarding!  

The therapy approach that I try to employ with young toddlers and preschool- aged children, especially within Early Intervention (home- based, family- centered therapy for birth to three year olds) is real- world, child- centered fun! All of you parents know that when your toddler doesn’t want to do something, there’s very little you can do to change his or her mind, so in therapy I try to let the child pick what we play.  You can make just about any activity a language- learning activity.  For example: if your child is building his or her core vocabulary (basic words that can be used in a lot of different activities), grab some containers of different sizes and shapes, some blocks or small toy items and now you have the supplies to work on requesting, turn-taking, and modeling language. 

When parents ask what they can do to make an impact on their child’s speech development, the best thing I can suggest is to talk to their child throughout the day and to give them different life experiences.  It’s all about creating a need to communicate! Go to the library for story-time, take your child to the grocery store (when your list is short!), go to the pool, the park, just about anywhere where they will encounter new things to look at and talk about and even some new friends to play with.  

Also, if your child is working with a Speech- Language Pathologist, be involved in his or her therapy.  Participate directly in sessions if you can, observe, and ask questions whenever you need to.  Ask your child’s therapist for a direct suggestion of what you can practice till you see them again (be it a specific sign/ word, or activity).  

Some of my favorite tips and activities for parents of children with developing language: 

1. Shake things up! Put a favorite toy in a visible but high-up place (hello communication opportunity!), stick a much- loved snack in a Tupperware that your child needs help opening. 
2. Offer choices when possible- giving forced choices serves as an opportunity to model language for your child and also lets them feel they have control to make a decision in the situation.  
3. Pretend food or empty food containers- let you little one “make” you something to eat, pretend to mix things in bowls with spoons, and get to serve you. Children like to “play grown up” and imitate things they’ve seen you do.  
4. Get on the floor! Get down on the floor and play with your child.  Turn off the cell phone, put up the computer and keep the television off! When you are available both physically and mentally for your child, s/he picks up on that. You are the best play activity for your child! 
5. Play off of your child’s interests- if your little one likes trains then start there.  Make silly sounds, even sounds that trains don’t ‘normally’ make.  Model sounds and words that your child can work toward imitating in a low- stress playful situation.  

Megan shared that some of her readers might be looking for suggestions for communication with a non-verbal toddler or early elementary school aged- child.  Personally, I am an advocate of a total- communication approach to learning and teaching.  What that means is that signs, pictures, approximations of words, words, or any viable and reasonable attempt to communicate is accepted.  

One strategy is to start with a few signs, especially for activities or items that your child wants/ needs and struggles to communicate about (eat, juice, cracker, teddy, train, go, etc).  Signs are great because while you can’t physically get your child to say words, you can physically assist your child’s hands in producing the signs as they begin to understand them.  

Another strategy to teach communication is to take and print pictures of high frequency items and activities that your child wants to communicate for.  When S/he wants crackers for example, encourage her to point to or give you the picture of the cracker to communicate what she wants.  Each time she exchanges a picture for an item or activity, you pair it with the verbal word as a model.  Over time, building your child’s repertoire of signs and pictures paired with verbal words. 

Using these ideas, I try to follow a 1-3 rule, which means that I will model a word or sign, only up to three times for a child to imitate.   If after the third model the word/ sign isn’t imitated, the item is given to the child and you move on to a different communication opportunity or a new turn.  

Above all else have fun! I know struggling to communicate with a toddler is difficult.  It’s hard for us as the adults and even harder the little ones so try to keep learning and communication fun and motivating.  

Thank you, Lisa!  You are the best and we wish you could be Ellie's school therapist, too!

Vacation Therapy.

Ellie is taking most of August off from the various therapies she receives, but that doesn't mean she's not doing informal work.

Marco Island, Florida proved to be all the therapy Ellie needed on vacation.  She walked on sand, imitated tasks like putting on sunblock, drank from my running water bottle, walked down to the water and sat in it by herself, learned new animals, and engaged in sensory play.

Thanks, Marco Island!

Sometimes therapy becomes all-consuming and I need to step back and remember that Ellie is constantly learning and growing, even if she still thinks a seagull is a penguin.

Gross motor and sensory work.

More gross motor and sensory.

Gross motor and speech: "Hi birds!"

Imitation skills and fine motor.

Not Ellie.  But awesome.

Sensory, fine motor, and "counting" the shells.  "Two, two, fwee."

Hugs and Thank Yous - Goodbye, Early Intervention.

Well, it's official.

As of Monday, Ellie will no longer be receiving therapy from Early Intervention (Parent and Infant Education in our area), and starting in September, she is officially getting speech, occupational, and physical therapy at school.

At this point in her life, Ellie had been receiving physical therapy for a couple months already.

We've been using Early Intervention services since Ellie was 8 weeks old.  She was evaluated for services within a few weeks of coming home from the NICU, and our EI team has been part of our lives ever since.

I am beyond excited for Ellie's school placement next year.  She'll be in a self-contained class of two year olds with various special needs, housed at the elementary school. with a teacher and aides who will love her and meet her needs.  She'll get to see the "big kids" at school and will develop lots of skills.

Best EI toy ever.

Because all of her therapy will be at school, after school time will be ours for mama to write lesson plans and IEPs, for Ellie to play with her friends, for reading books and getting "isssse cweeeeem!"

When we got Ellie's diagnosis, my teacher-self switched into research mode.  I learned about all kinds of therapies.  The internet is full of information on billions and billions of therapies, from supplements to neurodevelopmental to traditional speech and occupational therapy and physical therapy to treadmill therapy to flashcards and sight reading and... and... and... and....

It gets exhausting to read about them all.

Learning to sit.

Learning to eat.

We went with a pretty basic early intervention approach.  Traditional speech, increasing from the time Ellie was 6 months old to the current weekly sessions.  Traditional PT, once a week since she was eight weeks old.  We did infant education for awhile but had to cut it because of time.  Our goal for Ellie has been to help her develop skills correctly, encourage her, and help her communicate.

Learning to walk.

Ellie is two years and five months old.  She walks, although not as well as her friends without Down syndrome.  She talks, although not as articulately as her friends.  She demonstrates social and emotional skills and manipulation skills that are impressive for any age.  She finally eats with a spoon on occasion, but only if there's no adult present.  She says "please" when prompted and will prompt anyone to say "thank you" if they dare to forget.

Learning to stand was kinda scary.

Is Ellie doing as well as she is because of her therapists?  Partially.  They've certainly helped her to learn new tasks.  I have heard over and over again that for children with Down syndrome (and all children) input doesn't always equal output.  Ellie had the skills to walk by 18 months, but walked closer to 28 months.  Ellie didn't release objects in a meaningful way until 14 months.  Those delays can't be explained by lack of therapy or lack of parental input, those are just Ellie.

Fine motor toy, made with tips from Ms. Linda.

And her therapists have loved her through it all.

I'm pretty emotional about the end of Early Intervention.  When Ellie was born, I'd read about moms crying when their kids age out of EI.  "Crazy people," I'd think.

Well, sign me up for crazy.

We love you, PIE team!

She's come a loooong way.

I Wonder....

In teaching reading comprehension strategies, as I teacher, I model "wonderings."

"I wonder if seahorses have any predators..."
"I wonder if the character acted that way because he was scared/happy/angry/sad.."
"I wonder what would happen if..."

In the world of parenting a child with Down syndrome, I have wonderings as well.

I have a question for you...

I wonder if a greater understanding of congenital heart defects in children with Down syndrome could help us find a way to determine the cause of CHDs....  Is there something that can be done to help reduce the odds of CHD in pregnancy?  At this point, CHDs "just happen," but they happen to half of kids with DS.  No one knows why.  Same thing for duodenal atresia, although less common.

Right after Ellie's first "Heart Day" - a celebration of one year past OHS.  Her second Heart Day is almost here!

I wonder what teaching techniques are most effective...  DSE International is hard at work on this one, and I anxiously await each research paper they produce.  Nerdy?  You bet.  But what causes a group of people with the same genetic condition to have a much greater success with visual learning?  And how can we take advantage of that relative strength to ensure our children learn well?

I wonder what the rest of us, those of us without Down syndrome, can learn from our children and family members and neighbors and friends with DS....  Although it's a stereotype that people with Down syndrome are "so loving" and "so happy," 2009 research shows that people over 12 with Down syndrome are happy with their lives at a rate of nearly 100 percent.  Without data in front of me, I can guess with confidence that number is higher in the population with Down syndrome than the typical population.  Why?  For all of the "challenges," what strategies do people with Down syndrome use to live happy lives?  After all, we all want happy lives for our children.

Just don't go around claiming Ellie is always happy.  If you do, I'm happy to let you babysit.

My friend Becca is hosting a blog hop on the topic of DS questions and research.  Check it out.

Dear Grown Ups. {Ellie Guest Post}

Dear all you grown up reader people,

It's been awhile since Mama had me post on here.  I think that maybe is because I've been working a lot on my favorite word ("no!") and Mama thinks I'll just type this:

"NO no NOOOO no no No no NOOO nnnnooooo NO."

But I have way more to say than that.

First of all, I learned to blow bubbles.  Before Ms. Lisa gets all impressed, you should watch this video.  Mama calls me a cheater, and I call me "efficient."



Did you see those bubbles?  No blowing involved.

Anyway, I'm really working hard on my bubble skills.  Sometimes, Mama gets a little crazy and says "No" to bubbles.

No clue why.

Then, I try to bust into the bubbles by myself.

That Mama.  Really no fun at all.

Anyway, I'm doing pretty well.  Today, my mama is taking me to take tests to see if I get to go to a special school next year.  She said she's scared because strangers will ask me to do things, and there was something about my favorite word in there, but then I stopped listening.

I hope they ask me to blow bubbles, because I am excellent.

Also, I hope they ask me about animal signs and noises.  I can say "duck quack" and "pig oink" and "cow mooo" and "dog woof" and "Patchy woof."

What, you don't know "Patchy woof?" Patches (that's the grown up name - I like Patchy) is Ms. Kelly's cat.  I know Patchy is a cat.  That's why Patchy says "woof."

Sometimes, Patchy seems frustrated with my barking, but I just try to speak cat language.

Anyway grown ups, I am getting very good at art, too.  And I'm working on walking, slowly.  I took my baby doll for a walk yesterday.

I also got a wand for doing "Bippity Boppity Boo," a.k.a. "Bip Boo!"  My mommy told you yesterday, but failed to include a photo.  My wand is pink.  And has a star.  And hits stuff.  It's amazing.

Have a great day, grown ups!

Love, Ellie

PS. Thanks to the magic of technology, this post will publish while I'm at my official toddler tests, so they can decide about my school.  I want a school with cookies.  I should probably tell the test people about cookies.

A Post of Thanksgiving.

For all the new parents going through their first assessments, IFSPs, therapies, and early intervention services, I thought you should know that saying goodbye to therapists is way harder than realizing you need them.  The following is a note I sent to Ellie's physical therapist, who is moving away.

Dear Ms. Megan the Physical Therapist,

Thank you.

Two years ago, I was a brand new mama with a NICU baby with Down syndrome who was only a few weeks post-surgery.  You received a new weekly therapy assignment.

You not only taught my child how to roll over, how to sit up, how to crawl, how to climb stairs (urgh), but you taught me how to teach her.  You never once doubted Ellie, and you were the model of how I want people to treat my daughter.  You acknowledged her disability, you knew things would take her longer, but you absolutely maintained faith in her, even when she was a punk.

And she's a punk a lot.

I started crying when you left today, because I know that a lot of mamas are so scared when they start Early Intervention.  I am lucky that my professional background made me less scared than most, but I admit that I was nervous.  You not only set me at ease, you made our extended family feel better.

Prior to Ellie's heart surgery, your experience with other kids with Down syndrome and heart defects went beyond reassuring.  You had watched lots of babies go through open heart surgery, and you told us success stories.

We are very, very grateful for your love for our child, for your endless patience, and for your friendship.  As Matt and I watch my little darling with low muscle tone stand up in the middle of the floor and confidently take a few steps, I know we aren't the only proud ones.

We'll miss you!

Love,
Team Ellie

Relative Strengths.

Since Ellie still receives Early Intervention services, every six months, we have a little review, and every year, we discuss goals for the upcoming year.

In order to discuss goals, present levels must be noted.

In order to note present levels, Ellie must be assessed.

I know this.  I teach Special Education.  I can write a PLOPs page, which, by the way, stands for Present Levels of Performance.  I could, in reality, write Ellie's PLOPs page.

Ellie's gross motor is behind.  Even Grandma can't deny it, although I'm certain she will try.

Ellie has some gaps in her self-care skills, largely related to gross motor.  It's difficult to safely walk down stairs without walking!

I was very pleased with Ellie's performance in fine motor, speech, and cognitive skills.  She has some gaps, but overall, the scores were far better than I expected when I learned about her Down syndrome.

And then, we have social/emotional.

Therapist: "Is she rigid in her behavior?"
Me: "Um, she gets a higher score for that?"

I am pleased to share that my toddler is scoring quite well in her social emotional skills.  I'm more pleased to share that she is a wonderful little human being, who I love dearly no matter what the numbers say.

Thirteen month level for gross motor?  Still the funniest kid I've ever met.

Speech is going well?  That's nice, now stop demanding burgers at 4:45 am.  (But I still love her.)

Can't make a circle with her crayon?  She still calls it "awt pwetty."  Even if the art is on something other than the paper, like a DVD case, ride on toy, mama's books, etc.

Greets familiar people by name?  She didn't use his name, but during the meeting, our neighbor walked up to his door.  Since we share a porch, Ellie could see and hear him.  She stood at the door and yelled "Hi!!!!!" and showed him the shoes she'd stolen from her case manager.  That melted my heart.  Absolutely melted my heart.

Ellie, we love you no matter what scores you receive.  That you for being wonderful.

And to close, a video of my sleepy little chatterbox.

Speech Therapy for Toddlers.

Speech includes lots of imitation, and Ellie usually copies everything Ms. Lisa does - as soon as Lisa leaves our house.  Yesterday, Ellie wanted to imitate Lisa's actions throughout the session, or at least, for the first 40 minutes or so.



Then, she went to the stairs, stood up holding the baby gate, and yelled.  "UP!"  When that didn't work, she tried telling Lisa, "Bye bye."

We still love you Lisa, even if Ellie tries to kick you out!

One of my favorite "Copy Ms. Lisa Stories" comes from a session a few months ago.  Lisa was making Ellie's doll stack blocks.  Of course, doll has short arms, so to lift the blocks, doll had them up near her face.  For the next two weeks, Ellie would pick up a block, hold it up to her face, and bend her entire body forward to stack.  I'm sad I never caught it on video.

I hope you all have a great week.  Second birthday preparations are in full effect over here, along with scheduling annual appointments for various follow-ups and beginning Ellie's assessment process for school-based special education and related services.

Ability, Disability, and EI - My Personal Thoughts.

I am biased toward early intervention.
I teach Special Education, and I hold a birth-3 certificate alongside my regular elementary - 21 certificate.
My child has received excellent early intervention services.

So it is with total and complete bias that I present these thoughts, which are entirely my own.

I love early intervention (EI).

This blog has contained many, many love notes to our EI team.  And this is my chance, thanks to Lisa's blog hop, to spell out the reasons behind my love for EI, as well as to explain the limits I see.

Ready?

Ellie has Down syndrome, resulting in an intellectual disability, gross motor delays, speech delays, and fine motor delays.  (Socially, she is more or less on target at this time, and that is the only area we don't address specifically through therapies.)

No amount of early intervention can or should rid my daughter of Down syndrome.  It's in every cell of her body and has been since before she was born.  Although I believe Ellie is more alike other kids than different, she has some significant differences.  Early intervention won't remove the differences.

I believe that early intervention has helped my daughter learn to do things (eat, speak, hopefully walk) in ways that will benefit her long term development, and has caught some of her "bad habits" that could cause later postural or health issues.  Early intervention has also helped me learn new ways to teach Ellie.

Sometimes, Ellie fusses about therapies and we joke about her strong opinions, but the truth in our situation is that our therapists know exactly how hard to push.  If they feel like Ellie has been unhappy with therapy, they show up for a "repair session" - just hanging out and repairing the relationship.  Ellie's therapists have also helped encourage me as a new mama who is raising a child with unique needs.  They tell me what I'm doing right, and give me ideas to encourage Ellie's development.

Ellie is limited to 2 hours of therapy per week, plus consults.  The biggest weeks are three hours total.  I know some families opt for me, but to me, that's the limit for a baby/toddler.  We're starting the process to determine services for Ellie next school year, and I assume she'll qualify for a Pre-K two-year old program.  Sending my toddler to school is less scary because it's a hand off from one great team to (presumably) another great team.  I imagine that for parents unfamiliar with the IEP process, EI eases the transition into school based special education.

I love EI because it works for my kid.  I think Ellie is learning skills that will help her be more successful in the classroom.  And I care about her success in the classroom a lot, because I'm a teacher. I also know full well that her classroom success won't determine her fate in life.

Early intervention cannot define my child.  More therapies can't make her more loving, more giving, more entertaining, and better able to interact with her peers.  Therapy can help her walk, talk, and conquer academic tasks, but I think Ellie's future rests on her social skills.

I want Ellie to get what she needs to be successful in school.  Early intervention is a step toward giving her what she needs.  I have every expectation that Ellie has a disability that will impact her access to general education and require special educational services/accommodations through high school.

And I'm glad that the same folks who walked me through the first 1.9 years will remain my friends for the next 19.  I hope.

Linked up here - check it out!

What has been your experience with EI?  Love it?  

Let's Talk Learning.

My child may not be much for walking (other than a few steps at Barnes and Noble and the Disney Store today) but she's usually great about participating in learning activities.  Lately, I've had a few people ask me about what we do with Ellie for learning and speech, so I thought I'd address the topic on the blog.

I don't claim to be any sort of expert, but I am a certified Early Childhood SPED teacher (although I teach mostly upper elementary grades) and I read a lot.  So like I said, not making any sort of miracle-worker claims, but I'm going to share some activities that you might like that work for my child.

La Clase de Espanol: I don't speak Spanish.  I have a half-way decent receptive language and poor expressive language, but we really hope to help Ellie obtain Spanish proficiency.  Since Ellie has loved her See and Learn flashcards, I just downloaded some books in Spanish for Matt to read with her.  Check out DSFOC.  You have to sign up, but they don't spam you and it's free.  Seriously.  Go download some books (in English or Spanish) and some number cards, and some parent tips.  We are just starting the Spanish stuff, but she loves the English versions.

Counting Books: There's a few good ones, also at DSFOC.  And we've been counting everything.  And signing number songs.

Letters: Aside from reading Chica Chica Boom Boom over and over and over, Ellie has been playing with magnet letters.  Tip for when you don't want your kid hanging around the kitchen?  Put the letters on a cookie sheet in a room that doesn't have stairs going down to the basement, a hot oven, or knives!

Matching: This is the easiest one to set up.  Make a list of names in your family.  "Ellie" "Mommy" "Daddy."  Write the names each on a different color flashcard, make two copies of each.  Match away to work on colors and name recognition at the same time.  Ellie does this while I'm at work.

Fine Motor Skills: We bought Ellie a cheap RoseArt easel for Christmas, and Matt set it up with the legs upside down, so it's as low as possible.  Since it's pretty light, we put clear plastic boxes holding Ellie's LEGOs, blocks, and crayons on the tray to weigh the easel down and provide our little "I don't wanna" walker with support.  She loves to do art, and will announce that her work is "pwetty!"  I normally dislike RoseArt stuff, but in this case, it's the shortest, so it's the best for Ellie.  The bonus is that the easel forces her to stand, and she likes it!

Videos: Ellie loves herself.  So I take videos of her talking, and she watches them on my phone.  I have no idea what this means developmentally or if she's just kinda vain, but nothing gets Ellie talking like her own image onscreen.

Most Important... We talk a LOT:  I believe Ellie is a talker because her mama is a talker.  We keep up a pretty non-stop conversation describing everything, and really praise every new word.

I honestly believe different kids have different activities they love and different gifts because of their loves.  I believe I have given Ellie every opportunity to be an early walker, and she's nearly two and up to about five steps.  I know that the walking will come, and I'm glad she's a talker and a bookworm.  I hope you find these tips helpful, and if there's any great activities I've left off, please leave them in the comments section!

And yes, this post addresses the particular learning styles common to kids with Down syndrome, but these work for all kids.  And if you have a kid without Down syndrome who just happens to be really short, the RoseArt easel trick is awesome.

P.S. I pin a lot of the activities I find here.

Christmas Vacation, by Ellie.

Dear Grown Ups,

Something amazing is happening lately.  Mommy is staying home from work and playing with me!  I guess the big kids all get to stay home right now and not learn or something, because normally Mommy leaves to teach the big kids.

She says this is called "Winter Break" and that soon, she'll go back to making sure big kids learn stuff.  Until then, she gets to play all day long.

Playing with me is a big job right now, so she drinks a lot more coffee compared to work days.  Here's what happened on winter break so far.  First, Grammy was here.  She brought me presents!  While she was here, we had a party, and I got to play with my friends.

Then, we had Christmas Eve and Christmas and we went to church and Santa came and we ate a lot and there were presents.  Santa got me toothbrushes and goldfish crackers and a bed for my babies and Legos with zoo animals.  Mommy and Daddy got me an easel.  I'd heard that's what I was getting, but Mommy would laugh and say "she has no clue what that means."  OK, so I didn't know, but no need to rub it in.  Turns out, an easel is for art.

See?  Pretty art!

I'm excellent at art.  I go "draw, draw, taste the crayon, draw, draw, taste."  Sometimes, I do marker art, too.

I've also been watching two new movies I got for Christmas.  I got one about "Treeschoolers" and one that is regular (not baby) Signing Time.  So far, I learned to sign lightning and thunder and say the words cookie and cracker.  "Cookie" is a very important word.  I also got fake cookies made of felt that I like to feed my parents.  I tell them "cookie" and feed them felt cookie.  Yummy!

I've been working hard on my walking.  Mommy says it's like watching grass grow.  I think that means I am awesome.  I stand at my easel and practice using my legs while I make my art.  I push my baby in her stroller, too.  I got a new baby from Grammy and some other animal friends, so they all ride in the stroller.

To make sure Mommy stays super busy with me at home, I am also working on my Noah's Ark shape sorter a lot.  And my puzzles.  Both have lots of pieces for Mommy to help me find.  And I've been reading books.  My favorite books right now are Frosty and one about a toucan who says "Caw, Caw" and one about a lion and a frog.  Today, Mommy "accidentally" dropped the lion book behind my toy box and winked at Daddy.

Middle of the day at the park!?

Anyway, I intend to enjoy the rest of my winter break.  I have been practicing saying "snow" and "rain" by signing them, and I heard we should get some snow tomorrow.  Or rain.  No one seems to know.  Either way, I will be practicing all my weather signs to be prepared.

Oh, and I heard that we start a whole new year next week.  I'm not sure what that is about, but I was told to make some resolutions.  Are you ready?

1. Mommy said I have to write "Learn to walk."  Borrrrring!
2. Empty every cabinet in our house at least seven times.
3. Eat more cookies.
4. Find a way to get a pet doggie.  (Parents said no.  I will figure it out anyway.)
5. Make Mommy and Daddy be better listeners when I say "no."

Grown ups, I hope you have a wonderful 2013.  I'm sure Mommy will be writing blog updates and stuff.  Let me know if you or your toddlers have any resolutions to share.

Your friend,

Ellie L.

Thankful for Megan.

No, this is not a post about my own awesomeness.  This is a post about another Megan (popular name) who is a significant part of Ellie's life.

Despite Ellie's grumbling, we have an amazing physical therapist.  A therapist who cares about the whole child, who pushes Ellie when she needs pushing, who hugs and comforts Ellie when she needs hugs, and who feels like part of the family.

If you have a child who needs Early Intervention,  I hope and pray you have therapists as awesome as Ellie's.

Some things I love about physical therapy:
* Conversations about Ellie as more than a little gross motor machine.
* Laughter.
* The pride on Megan's face when Ellie accomplishes a task.
* Endless patience.
* Creativity and humor.

Megan, we love you and we are so very thankful!

Thankful for Talking.

As I've mentioned quite a few times recently, Ellie seems to have experienced a major change of heart.  The child who once loved all things gross motor is now a little chatterbox, but not a walker.

Granted, she usually won't talk around new people.  In fact, her caretaker in the toddler room at church said something about Ellie not talking, which surprised me somewhat, but I'm sure in a couple weeks that same caretaker will be amazed at Ellie's non-stop monologue.

Ellie's current favorite words are:

Apple.

Mine.

Up.

Down.

Out.

More.

No-no-no-no.

Hat.

On the signing front, she's loving:

Wind.

Boat.

Bath.

Cracker.

She's also been saying something that sounds like "Gobble gobble," I assume in anticipation of Thanksgiving.

{31 for 21} Q&A.

I recently sent out a request for the questions my Facebook friends might have about Ellie, Down syndrome, Ellie's health needs associated with having Down syndrome, early intervention or "anything else."

Here are a few of the questions I received with my attempts to answer:

1. How can the church welcome people with Down syndrome and their families?

I can only speak for my own family here, but I would guess I'm not alone.  The things I want for Ellie aren't so different - I want her to serve, to have deep relationships and a deep faith.  One way a church can be welcoming is to have high expectations for my child, and expect her to serve, to attend Sunday school, and to participate.  At the same time, I want people to ask questions to ask respectfully but to ask when they don't understand something about Ellie, Down syndrome, or her particular needs.  As Ellie gets older, I think the ideal community will also make sure other kids understand her differences and understand that she is okay, she just moves at a slower pace than some kids.  I want the other kids in our church to be Ellie's friends, to see her as valuable in the eyes of God, and to see her as a person who has something to offer.

For parents, I can say first and foremost, I am grateful no one from our church ever offered to pray away Ellie's Down syndrome.  Encouragement that God is present and good is the message I wanted facing a new diagnosis.  "Special babies for special parents" isn't biblical.  "God does everything for a reason" sounds trite when you have an infant facing major surgery.  But... "God is present," "How are you doing?" and "How can we pray for you?" are all great responses.  And check in with parents.  Offer practical help during surgeries, but also for parents of older kids who might need a break.

Other parents, how would you answer this question?


2. What can you tell me about pre-speech oral development, therapy, etc?

Disclaimer: I am absolutely not an expert in this area, but I'll tell you the things we used and still use with Ellie.

First and foremost, we exposed Ellie as much as possible to a lot of words and conversations.  I orally labeled everything I could as we went through our day.  We also did some massage around Ellie's mouth, and made sure to use her spoon sideways when she started eating.

We started signing seriously by six months, and also allowed Ellie to watch Baby Signing Time DVDs.  While she didn't start signing until much later (maybe 10 months?) she understood quite a few signs very early.  At ten months, we started See and Learn "First Word Pictures" to help vocabulary development.  I think this program is fantastic, it's research based, and it's specifically for kids with Down syndrome.

Ellie is a good eater, and we let her try a lot of textures and spicy foods and make a mess.  The goal is to give her plenty of sensory input in her mouth, and I have no idea if that input has made a difference.  Ellie still won't use utensils, but at 13 months gave up the bottle completely for her straw cup.

I'm always fascinated by the gaps and inconsistencies in Ellie's development, and I've noticed that when she's working hard on gross motor, her speech plateaus, and vice versa.  Ellie received monthly speech therapy starting at six months, and every other week since she was about a year.  She was late to babble, and learned to say "apple" before she learned to say "no."  She's demonstrating speech skills a few months behind her cognitive level, which we are monitoring.

We are currently trying to add Spanish, with the idea that I'll speak English and Matt will speak Spanish.  I have no idea if we'll stick with it, but we would like Ellie to be at least proficient.  I'll let you know how it goes.

3. You've mentioned Ellie's physical therapy and speech therapy.  Would she be receiving physical therapy if she didn't have surgeries?  And did you do anything extra along with the therapies?

I'll answer the second part of the question first - we do a lot beyond the weekly therapies, but a lot of our ideas come from Ellie's therapists.  At this age, the document guiding Ellie's services is family centered, so her therapists not only work with Ellie, they work with me to help me teach her.  We also have incorporated See and Learn and Baby Signing Time (see above) and try to give Ellie as many experiences as possible.  I think the NICU impacts different people in different ways.  We felt like Ellie spent the first three weeks of her life so limited, we don't want to limit her experiences now.

As far as physical therapy, Ellie receives that service due to low muscle tone, which is present in almost every person with Down syndrome.  (Low muscle tone, or hypotonia, can also be found in the general population.)  Ellie qualified for PT because of her diagnosis, because it's hard to be "behind" at five weeks, which was her age at the evaluation.  If she didn't have Down syndrome, but still had the heart surgery, she may have qualified for short term PT following recovery, if she showed significant delays in her gross motor skills.

My expectation is that at some point, we will drop physical therapy once Ellie can run, jump, skip, and ride a trike.  At that point, she'd be in school and receiving either Physical Education as a class or Adapted Physical Education.  I also need to consult with her therapist.

Any other questions?  Feel free to leave them in the comments below, or email me... I'll do my best to answer.

{31 for 21} Wise Words.

Despite Ellie's mockery yesterday, I think all of our regular readers know that we love our early intervention team.  I tell people who have kids with disabilities to move to my neighborhood.  I love early intervention.

My honest belief is that Ellie is able to communicate, move, and play the way she can because of our team.

Ellie had her "every 6 month" IFSP review last week.  For those unfamiliar with the special education process, an IFSP is a document that guides family centered early intervention services for the under-3 crowd.  As usual, while her case manager and I were chatting, Ellie was demonstrating her, "I hear what you're saying, but I have other ideas" skills.

Translation: "Ellie, give Mama the shoe.  Shoe to Mama," resulted in "I'll be leaving with this shoe now."

(Note: I try to make requests twice, once using the language I would typically use, and once using a simplified version to make sure Ellie understands.  She made her understanding clear by looking at the shoe, and me, but then taking off the other direction.)

Ms. Linda reminded me that the fortitude Ellie demonstrates while blatantly disregarding requests/commands/rules is the same fortitude she demonstrated while recovering from her two major surgeries.

Linda called it "fortitude."  I called it other things.

Now that Ellie is healthy, she's using her determination for other means.

"More food."
"Mamamamamamaamamamamamamma!!!!!!!!!!!!!"
And of course, removing all the books from the bookshelf.

You win some, you lose some.

{31 for 21} Physical Therapy Month, by Ellie.

This is a post to Ms. Megan, but first, I have to say "Happy Physical Therapy Month" to Aunt Danielle.

Now Ms. Megan.

Blog readers, I have known Ms. Megan forever.  She is my very own physical therapist.  She is also sometimes my friend.  Every week since I was six weeks old (except when Megan left to have her own baby) Ms. Megan has visited my house.

Every week, I am so happy when my Ms. Megan arrives.

Toy Ms. Megan brought over one time.

And then, she tortures me.

Ms. Megan's job is horrible.  Instead of playing with me, she makes me do things that are awful.  When I was very very very little, she made me hold my head up.  Then she made me roll.  And sit.  Ms. Megan even came over after I had heart surgery.  That was when I worked on sitting up.  Now she makes me try to walk and stand and do squats.  My mommy won't even do squats, but she lets Ms. Megan make me, a sweet little 19 month old child, do squats.

Ms. Megan is very nice, except for the torturing.  That's why I greet her with a smile every week, but the torturing has got to end.

Ms. Megan, I love you very much, and I think you should just come hang out with me with no torture.  Your "games" all seem to work on gross motor skills.  I think you are sneaky.  Quit being sneaky.  Come play real games, like "feed Ellie Cheerios" or bring your baby over for me to hug.

Also, Ms. Megan, my mommy lies about you.  She says, "Ms. Megan is coming to play!"  That is why I am so happy about Ms. Megan.  And then, Ms. Megan does not come to play.  Baby torture isn't playtime.

Ms. Megan, I have some physical therapy tips for you.

Ms. Megan made me wear 80s spandex.

I quit.

1) Walking is overrated.  If you are a very fast bear crawler and can pull up, walking is totally not needed.  Also, it helps if you can point to things and make your friends bring them.  That is what I do.  Maybe, just maybe, that could be a physical therapy lesson?

2) Physical therapy should include more tips on getting past baby gates.  That would be very useful, way more useful than squats.

3) Do not leave "toys" here.  I know that sometimes you leave me things that you call "toys," that are really just baby torture devices.  Good toys are Elmo, baby, and kitchens.  Your toys are things to work on core strength and squats.

4) Someday, can you pretty please come over just to play?  That would be nice.

Ms. Megan, someday, I will thank you.  But not today.

Love, Ellie

PS from Ellie's Mommy: I did warn Ms. Megan that Ellie would write this post.  We all (even Ellie) are so grateful to be in a jurisdiction that offers excellent services for young children with disabilities, and we feel like we hit the jackpot when they assigned Megan as our PT.

Learning to Use a Spoon.

Ellie tends to do best when given the opportunity to explore and figure things out on her own.  Three spoons later, we have maybe one real bite...

Talkin'.

I've heard over and over again that kids with Down syndrome focus.  Ellie spent the first part of her life very focused on gross motor.

The past few months, she's been hyper focused on speech and signing.  She was so very close to walking and doesn't seem interested anymore (although I'm hoping two mobile friends she sees daily will help) but she is signing and chatting like nobody's business, mostly to express strong opinions.

This video is mostly a string of random words with prompting from me.  (There's also a musical interlude.  Plug your ears/use the "mute" button, hum "The Wheels on the Bus," and watch Ellie.  Or ignore that advice and listen to me singing.)

For those with younger kids, this is NOT how we teach Ellie.  We use context, and pictures, and the objects when available.  This video is for grandparents and aunts and uncles and cousins and Miss Lisa.  Please note that all of Ellie's spoken words start with "B".  Also, note that Ellie only does it halfway, but she won't sign sleeping.  Instead, she lays down on the ground, then pops back up with a smile.  "Sleeping."



Enjoy!