Monday, July 21, 2014

Findings.

Today, I found a lot of fun old mementos and stuff.

Some background:  We've lived in our house for a few years.  It was built in the 40s.  It's a townhome.  There's not a ton of storage for the amount of stuff we own.  We own too much.  I just read 7 by Jen Hatmaker and was again convicted that we own too much.  While I spend time each summer cleaning out, this year, I'm trying to not only get rid of clutter, but give away some of the excess we own to help people who may not have the luxury of owning too many books.  I spent some time today in the basement, sorting.

Sidenote: Looks like 7 is in the Kindle lending library, just FYI.  And I'm reviewing another book of Jen's in a few weeks.  

We own how many books, Mommy?


So anyway, I was cleaning, filling up recycling boxes and trash bags and giveaway bags for "general thrift store," "homeless shelter," "crisis pregnancy center" and "BOOKS."

I trashed a lease from 2001, IMAX tickets from a friend's birthday in 2003, and some kind of user guide for Norton Antivirus that was at least ten years old and last used three computers ago.

And I found a letter.

The letterhead was from the DSANV, our local Down syndrome group.  I have received many things on their letterhead over the past few years, but this particular letter was important.

"Dear Matt and Megan, Thank you for contacting us….."

The letter I'd found was the one we received right after we learned Ellie would be born with Down syndrome.  With the letter were booklets about Down syndrome, contact numbers, and encouraging words.

I hadn't looked at it in nearly four years.  The first time I read it, I did so through tears.  In fact, there's a big tear stain right on the folder housing all of the encouraging pamphlets.  I reread the letter thankful for how far we've come in this journey.

I sent a Facebook message to the Parent Coordinator who sent it.  I remember the information we received having an impact.  I remember looking at happy kids on various brochures and thinking, "That's not so bad."

And then, I threw the letter into the recycle bin.

I could have kept it, but I didn't see a need.

My daughter with Down syndrome was in the basement "helping" fold laundry.  She was hugging a giant Olaf cutout, and when she found Princess Anna, she began to sing "Do You Wanna Build a Snowman?"

I've written in the past about how I don't have pictures of Ellie after open heart surgery - I remember enough.  Likewise, I don't need to hold onto an old letter to remember the fear and uncertainty we faced as we waited to meet our daughter.



However, I'm grateful for today as a reminder.

There's hope.


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Friday, July 18, 2014

Challenges, Connections, and Comfort.

Yet again, I am doubling up on blog hop posts for my friend Meriah's blog hop.

The next two posts focus on the challenges associated with disability, as well as the comfort and connections.



The challenges of raising a child with Down syndrome (specifically, raising my child with Down syndrome):

* Ellie usually is not the best at _____ in her class.  I'm caring less and less, but I know that issue will resurface repeatedly over the years.
* Ellie meets milestones later than her peers.  (Walking, talking, potty training, etc.)
* We have to save for Ellie differently due to the laws that limit social security income for people with over $2,000 in assets.  Therefore, we have to make sure Ellie doesn't have any assets when she turns 18, so she can receive aid if needed.
* Lots of doctors appointments and meetings for school.  Lots.  Lots.  Lots.
* Watching other people treat my three year old like a baby.
* Listening to people use language that hurts people with disabilities, specifically the word "r-tarded."
* Reflux.  It's been acting up again lately.
* Open heart surgery.
* GI surgery.
* Everything is too tall for Ellie.  She needs a boost for almost everything.



But the comforts and the connections:

* Connecting with new parents on Babycenter and providing support for pregnant and newly diagnosed moms.
* Friends with Down syndrome in the neighborhood.
* Having friends wherever we go thanks to the big Down syndrome community.
* Living in a community where Ellie receives 1:1 support to participate in inclusive gymnastics.
* Pride when Ellie meets a milestone she's worked hard to achieve.
* Listening to Ellie talk nonstop.
* Our early childhood special education program.
* Therapists who know and love my daughter exactly as she is, but who work hard with her to allow her to reach her potential.
* Knowing that my daughter is the person God intended, with her own full personality and dreams and hopes and fears and loves.


I've heard special needs parenting described as extreme parenting.  The lows are hard.  The highs are oh-so-great.  I have no idea if this statement is true, because I've only parented in this special needs realm.

I do know that raising Ellie is sometimes hard.  Sometimes, it's pretty simple.  And often, it's full of laughs.


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Thursday, July 17, 2014

Flashcards for High Interest Words.

As I mentioned in a previous post, I made Ellie some new flashcards.  In this video (which is terrible quality, sorry) she'd decided she was done with flashcards, but her baby doll could do them.



Who knew baby dolls could do so well at word recognition?
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Tuesday, July 15, 2014

Summer Learning.

Ah, summer.  A fantastic time of year to be a teacher or a student.  Last summer, Ellie still received therapy services through Early Intervention.  This year, however, she was unable to attend the Extended School Year program offered by the district due to our travel plans.



So today, a few of the things we are doing at home to work on some school-type skills but still have fun during summer vacation.  Let me know if these are helpful to you, and feel free to share any other great tips!

Physical Therapy

Ellie has taken up running.  After the whole family was sick for a week, and then vacation, I've been a little on the slow side.  I've been taking Ellie in her stroller while I run, but the other day, she insisted on running herself.  I encouraged her.  Even if my road back to race shape takes longer due to my little shadow on the run, seeing Ellie run is worthwhile.



Ellie is also participating in a summer gymnastics class and going to the pool almost daily.  When we were in Florida, she spent a lot of time walking on the beach, building up her muscles and improving her balance on the uneven surfaces.  Since summer is a good time to slow down, I encourage Ellie to walk in stores independently more often - I'm not as rushed trying to get to the next place on time as I am during the school year.


The World Cup provided some encouragement with kicking skills.

"I kick it!"

Educational

Ellie loves flashcards, so we've begun to work on some word identification.  The words are all high interest.  I just opened a word processing document and wrote the names of familiar people and dropped in a photo of each person.  That's one side of the card.  The other side has the name only.  I cut them out and taped each to a scrap of leftover scrapbook paper.  I should laminate them.  I haven't yet.

Teacher tip: Look for a font that doesn't have the fancy "a."

Since Ellie loves the Treeschoolers DVD about plants, we planted some carrots, onions, and radishes in a "root viewer" toy I bought on zulily.  Ellie's favorite part of that activity was stirring the dirt (adding water to the peat to make it expand.)

Stirring dirt.
We're also counting everything.  All the time.  And yet Ellie still counts 1, 2, 3, 4, 5, 11…  So that's our next project!

Occupational Therapy

Fine motor skills are one of Ellie's biggest challenges.  This summer, I'm trying a little bit of everything.  We're coloring a lot on big paper, sticking stickers, and playing with play dough.  My dad and stepmom got Ellie this sticker book with reusable stickers, and that seems to be a favorite.  I'm drawing circles and asking Ellie to add eyes, nose, and mouth.  We're making letters in the sand.  Fine motor skills are so important for school - cutting with scissors, writing, tracing, coloring.




Sensory activities have been playing in the sand and playing with bubbles, especially at our neighbor's birthday party, which had a bubble theme.  Anything to help her feel different textures and strengthen hand muscles is good, including the spray ground and the pool!



Note the glasses on her neck.
And of course, the other big concern with fine motor skills is making sure Ellie can see whatever she's working on.  At this point, she will wear her glasses on her neck.  The glasses journey continues to be one of baby steps.  (If you're on Instagram, I am documenting these baby steps with #elliegetsglasses.)

Speech

Full sentences.  Now, expecting a three year old with Down syndrome to speak in full sentences at all times is probably a lofty goal.  However, I've been using chaining to help Ellie use full sentences for requests.

Example, Ellie wanting me to open a lid on a cup.

Ellie: Help cup!
Mom: Help me open the cup, please.
Ellie: Help open cup, pwease.
Mom: Good job.  Help me open the cup please (and I open it.)

Ellie loves to sing, so we expose her to music when we can and encourage new words to her favorite school song.  Where is _____, where is ____?  We sing about cars in the street, baby dolls in the backseat, hats on our heads, you name it.

Otherwise, we continue to expose Ellie to new language experiences (in English and Spanish) and to praise her for new words and phrases.

A Look Ahead….

Maybe if I share this publicly, I'll do a better job of teaching Ellie some skills that are next on the list, including:
* Getting dressed with more independence
* Potty training (which can be really hard for kids with low muscle tone)
* Cutting soft foods with a knife
* Responding appropriately to questions
* Counting to ten by rote
* Counting objects with 1:1 correspondence

They key in all of these activities has been helping Ellie learn through normal summer play, but intentionally working on areas in which I know she needs a little boost.

I hope you're enjoying your summer vacation!
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Thursday, July 10, 2014

On Down Syndrome.

My friend Meriah is hosting a blog hop each week this summer, and I'm currently three weeks behind.  The topics all focus on disability as either a person with a disability, a family member of a person with a disability, or as an ally.  Instead of writing three posts today, I'll attempt to address each of Meriah's three prompts.

A bit about my friend Meriah - Her daughter Moxie has Down syndrome, so Meriah is the parent of a child with a disability, and she happens to have a disability herself.  And Meriah is going to NDSC this year for the Down syndrome conference, and I am not, so she is unintentionally making me sad, because I would love to meet up with her.

And she's super funny.  And she writes about a lot of important issues in the disability community, and works hard to connect the Down syndrome community with the disability community as a whole.

So here we go….

#1: My Connection to Disability

In college, a requirement for my major was the class Adapted Physical Activity, in which I learned how to modify physical education activities for people with disabilities.  I took that class around 1999, it was fine, and I would have put it smack dab in the middle of college classes as far as impact goes.  I remember some things, specifically about people first language and prerequisite skills, but I wasn't inspired to go and teach adapted PE or anything like that.

Later in college, I worked for a tutoring organization and provided support in several classrooms, including for special education classes and students.  I enjoyed myself and learned a lot.

Several years later, I made a career change and went into full-time teaching.  My teaching certificate is in special education, so I knew students with disabilities.

A year into my teaching career, I got the call that I would be having a baby girl…. and that she would have Down syndrome.

My connection to disability became much, much more personal.  My connection to disability is now the three year old girl who is "cooking" me chicken and corn on her plastic grill, running back and forth with her "yummy yummy" offerings.  My connection to disability is a little girl who has received disability services from birth, and who makes my world brighter.

Inspecting her goldfish at the beach.


#2: Coming to Terms with Disability

Of course, when I got the news of Ellie's diagnosis, I wasn't exactly thrilled.  Despite my background in special education, I had a lot to learn about Down syndrome in general and my daughter specifically.

I live in the most educated area in America, and education matters a lot to my family.  Come on, I'm a teacher.  I read about education theories for fun.  What would my daughter's learning look like?

The answer is that Ellie's intelligence doesn't always show up in traditional ways.  She has a lot of trouble following directions and she doesn't exactly see the need to do so.  But Ellie also has a fierce independent streak, she's a great problem solver, and she develops on her own time.

Coming to terms with Ellie's disability has meant letting go of what I want for Ellie in some ways. Instead, I've needed to consider what Ellie needs.  She will probably not be the most well-behaved child in her class.  She will likely be the most spirited.

Ellie isn't me.  Ellie isn't Matt.  She has personality traits from both of us, but she is exactly who she was created to be, with her own gifts to celebrate.  Coming to terms with disability has meant coming to a realization of what matters - raising a child who loves others, who has a faith, who contributes and brings joy to her community.

At the Children's Museum of Naples.


#3: A Letter to My Younger Self

Dear Past Self,

You will be okay.  Ellie will be okay.  Matt will be okay.

The child you pray will survive will thrive.  The little girl who makes no consonant sounds will never stop talking at age three.  The little girl who bear crawls for a year will walk and run.  She'll think she can jump.

Those things you worry about are little.  They don't matter.  And the big things?  She'll do just fine.  Heart surgery?  She'll call her scar her zipper and help put sunblock on it.  She'll give kisses and proclaim love.  She will be her own little person and you will laugh frequently and laugh hard.

She'll be a great road tripper.  You'll drive to Florida with her for fun.  Yep, you read that right.  When a friend tells you her unborn child has Down syndrome, you will not be sad for her.  You will remember the hurt, but you won't feel sad.

Your life will be good.

Quit stressing.


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Tuesday, July 8, 2014

Snippets from Florida.

Ellie worked it.

At the Naples Farmers Market, she managed to earn herself two free bagels and a mango just for being friendly toward the vendors.



Thunder and lightning.

We got thundered out of a water park, and lost power that night.  Despite the loud thunder, flashing lights, intermittent air conditioner, and neighbors lighting fireworks, Ellie slept like a rock.  She even slept in the next morning, something unheard of around here.

Photo credit: Matt, who flew down to join us for a few days.

Swimming.

The little girl who would hardly touch the water when our pool opened over Memorial Day weekend likes swimming in the ocean, as long as Mommy and Daddy keep our hands on her.  She lays in the shallow water and laughs uncontrollably.



Bedtime stories.

I told Ellie to lay her head on her pillow and I'd tell her a story.  Ellie decided that was not acceptable.  "No!  Ellie tell story!  Lay down!"  Her story went like this: "A princess.  Knock knock knock.  Open the door.  Blink blink!"  (There were hand motions for the blink-blink.)


Birds.

Matt loves birds.  Ellie liked the birds too.  I liked the dolphins more.



Rainy play.

Rain is normal in Florida this time of year, but we took a trek to the pier anyway.  Ellie was totally content and she even did some splashing in puddles around the house.

 }

But she still misses school…. she's been singing Ellie's version of the clean up song. (Clean up, clean up, everybody do a cheer!) and singing "Where is Ellie?  Where is Ellie? She at SCHOOL!  Yay!  Hi fwiends at school today!"

Sorry kiddo.  Hopefully the beach is a decent substitute.


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Sunday, July 6, 2014

Breaks from the Norm and Development.

Our church goes on a retreat each year to create space, to get away, to build relationships, and to prepare for the year ahead.  Getting away from the norms of life helps us readjust to be better when we return.

When breaks occur in the school year, I have time to reflect on my teaching practice and return with new ideas.

And yet each time Ellie goes on vacation and takes the time to integrate new skills into her daily routine, I'm shocked.

This trip is no exception.

"Mommy, I find-ed a shell!"

She plays on the beach doing her entire gymnastics warm up, including planks.





For two days, she talked about a hippopotamus, leaving me in utter confusion, until I realized a hotel along the road to the beach featured a hippo statue outside.

She runs up and down the beach and runs into the shallow water.



The first time we came here, less than a year ago, she was barely walking.  Two word combinations were a big deal.

Now, we hear Ellie's version of her school attendance song from the backseat:

Where is car?  Where is car?  In the STREET!  In the STREET!
Where is shoe?  Where is shoe?  In the FOOT!  In the FOOT!
Where is Ellie?  Where is Ellie?  In the CAR!  In the CAR!

She just interrupted me to hand me cereal she dropped in her chair while eating.

"I lost the cereal.  Gross.  Put in the bowl."

And all of those things make me proud, but none compare to the total joy I see in Ellie at the beach.




Unless there are fireworks.  She sobbed uncontrollably at the loud (setting off car alarm loud, in her defense) fireworks and we had to leave because she was terrified.

(No tripod, and sobbing child.  Pretty excited to get this shot!)


Some other scenes from the Fourth of July:

Ellie loves her shoes.

Parade float.

Parade.



Here's hoping you had a wonderful time celebrating Independence Day and that those on summer break are enjoying themselves and taking time to reboot for the upcoming year.



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