Friday, May 13, 2016

Input/Output: Credit where Credit is Due.

A mom friend recently shared a post that expressed some thoughts on parenting a child with a disability.  The post essentially said, "My kid will be successful because I will make it so."  (I'm paraphrasing.)  My friend said that this rubbed her the wrong way, especially on the heels of a bunch of Mother's Day posts praising those who raise children with disabilities as extra amazing.

Don't get me wrong, I think my friends who are raising kids with disabilities are amazing.  But sorry, friends, I don't think you get to determine your child's success any more than parents of typical kids determine the success of those children.

Here are some lessons I've learned parenting and making a career of work with children.  They're all my personal opinions, but many came from conversations with moms in the disability community.

Doing nothing will get you nowhere.

Okay, so let's start here.  It's a bad idea to ignore your kid, never read to him or her, and just expect them to turn out awesome.  Some kids do, but let's just agree that ignoring your kid is not a stellar plan.

Doing everything is no promise of success.

Guess what?  My kid will never be a great basketball player.  She's been the shortest kid in her class for three years.  I love her.  I think the world of her.  If I spend every day for the next five years teaching her how to play basketball, she will most likely learn the game.  But I can't make her tall.  She won't be a basketball "success" and play Varsity ball or play in college.  She's on track never to break 5' and that's just life.

By the same token, I can pour every resource into my kid but I can't determine how she will respond. Her success is not ultimately up to me, and I can't take credit.  I can try lots of different strategies but I am not ultimately going to make Ellie a "success."

In fact, I can take less credit with Ellie than Caroline.  Caroline is 7.5 months old.  At this age, Ellie had two different therapists working with her weekly.  With Caroline, my husband and I are flying solo (er, duo?).

Your definition of success might be messed up.

Ellie is five.  She can read some sight words and knows all of her letters and sounds, she is working on digraphs and blends, and her speech is beyond many kids with Down syndrome.

The first question is: "Is Ellie a success?"  I'd argue that the above paragraph has nothing to do with whether or not Ellie is successful.  Is she contributing to her community?  Is she in relationships with meaning?  Those determine her success in my eyes far better than a list of attributes.

Your definition of failure might be messed up, too.

Oh, and Ellie cannot draw much that is recognizable.  She struggles to write most letters from ideation (or even trace.)  Her 1:1 correspondence is weak at best.  I don't want to list any more of her struggles here because she will grow up one day and read this, and I want to respect her privacy.  But she has struggles.

Is Ellie a failure?  Have I failed her as a parent?

I don't think so.  I think Ellie has some specific delays that make certain things harder for her.

You see, I know some parents of kids with Down syndrome who have given their kid every possible support, and their kids get cancer, or have autism, or have something making it exceptionally hard for them to meet some random success milestone.  Let's not give ourselves too much credit.  If raising a kid with Down syndrome or another disability makes us a crew of supermoms, what does that say about our kids?

Are they too hard to raise?  Are they burdens?  Impossible to teach?

Let me let you in on a secret.  When I dropped Ellie off for respite care the other day, I said that I felt like I was getting respite for the wrong kid.  

When we make parents of kids with special needs sound like supermoms, we make the kids sound like burdens.

When we make the parents of kids with special needs sound like heroes who make or break the kids' successes, we give the parents too much credit.

Give my kid the credit.  Let me share it.  Let her amazing teacher and assistant and gymnastics coach and therapists share it.  Just like with my typical kid.  She's 7.5 months and cruising.  Guess what?  I have given her toys and tools but I didn't make her ahead in gross motor skills.

Kids are not vending machines.  What I put in doesn't always give me the output I would expect.  (See also: Sleep training failure/Apnea/Low ferritin.)

If Ellie only makes it because I'm her mom, I am doing a grave disservice to my child.  Self-advocacy matters.  Her voice matters.

And she's learning to self advocate.  If you want to test her out, point at her and ask how old she is.  If you really want to test her out, imply that she's a baby.  You'll hear an answer loud and clear.

"I am FIVE years old."

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Friday, May 6, 2016

A Medical Month.

Well, I just liked the title.  Really, it's a medical two weeks and two days which includes both April and May.

As I mentioned in my last post, Ellie had a blood draw as a follow up to her sleep study.

Since then, Ellie started a new medication and resumed Flonase in a higher dose to help combat apnea.

Minor problem: She had an adverse reaction to the antihistamine.

Translation:  She wasn't like our daughter anymore.  She was hitting and angry and it was scary for everyone.  We pulled her off the medication and her medical team has advised against antihistamines for the foreseeable future.

I called the Nurse Practitioner at the sleep clinic, and left a message with the receptionist.  "I think this is having a bad impact on my daughter.  She's hitting her friends."  Ellie interrupted, "NO, I'm PUSHING them!!!"

Ellie acts out normally, like any other five year old.  Or, maybe not like other five year olds in the way she acts out, because developmentally she's a bit different than other five year olds.  But she engages is standard "naughty" behaviors, like saying inappropriate words (her favorite is "POOP!") or using her knee to knock Caroline down if Caroline touches her stuff.  ("I did NOT push Caroline!  I promise!")  But mean isn't a word I typically would use to describe Ellie.  The medication however, made her aggressive and impulsive, a combination that was horrible.  After a couple rough days at school and an evening spent in tears as I ran around the house following my little tornado and attempting to keep her sister safe, we determined the culprit.  That was three days ago and this morning Ellie was a bright ray of sunshine again... a sleepless one, but at least a nice one.  (Until Caroline tried to take her chair, but we can deal with that.)

And just to keep things exciting... with a doctor's visit yesterday and three more next week, medication changes are the rule of the day.  After three years, we are attempting to wean Ellie from reflux medication.  Let's see what the ENT, ophthalmology, and cardiology have to say.  Hopefully, the most we will get from them is the go-ahead for a tonsillectomy, an updated glasses prescription, and a "see ya in a year."

Normally, Ellie's medical stuff is no biggie.  A few extra annual appointments make me feel scattered each Spring, but that's been it.  Daily medication for reflux to remember on vacations, but pretty minor issues.  With the annual appointments coinciding with the sleep study follow ups, this season has been harder than most for me.  (The lack of sleep for the last seven months/five years might have something to do with it too.)  I remember celebrating at the end of 2013 that it was Ellie's first "surgery free" year.  That milestone was big.

Ellie is tough as nails, but she's getting sick of doctors and I can't blame her.  Instead, I'll keep holding her hand and try to provide opportunities for fun in the midst of the unending appointments.

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Saturday, April 30, 2016

Catching Up: Baptism and Sleep.

When Ellie was a baby, I remember reading a criticism of the Down syndrome community somewhere.  It said something like "Those moms all blog about the cute little babies and their kids turn five and they stop blogging because their lives are so hard."

Um, no.

Our kids turn five and maybe we have another baby and then we blink and it's been two weeks since we blogged because we've been running around from school to sports to friends to church and we are BUSY!  Because we have school-age kids, and that's life.

So, no, my life doesn't suck, but yes, I've been neglecting my blog.  Ellie is still cute, by the way.

Two big recent events, in (semi)chronological order:

Caroline was baptized, for real this time!  You may recall that we planned Caroline's baptism for January, but instead, we got a blizzard.  Well, this time around, we made it to church, the weather was great, and Caroline slept through the service, barely opening her eyes when our Rector (that's the pastor in an Anglican church) poured water on her head.  She woke up for a small celebration at our house following the service.

Since we had people over, a couple days before the baptism I asked my dear friend/Caroline's godmother Christina to help me plant some of the planters in our backyard.  That project turned into a small renovation project, and our patio no longer features carpeting!

Both photos credit: Jessica Mellon.

We also got the results of Ellie's sleep study.  No big surprise, her ferritin is most likely still low causing restless sleep, and she has moderate apnea.  We've attempted to treat the ferritin in the past and will continue to do so, and we have an ENT added to our annual spring list of specialist visits.  

The sleep clinic wanted some updated labs from Ellie, which meant a blood draw.

She is so tough.  She watched and didn't even say "ow," just thanked the tech and asked me for a treat.  We went to meet friends for donuts because... well, when the five year old handles a blood draw better than mom, she gets a donut.  And when mom accidentally glances at the needle, she deserves a donut, too!

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Tuesday, April 12, 2016

Sometimes I'm Surprised.

Hearing Ellie speak in sentences is normal for us.  Her articulation and syntax can be a bit off, but our girl is a chatterbox.

(I hesitate to even write that because it feels braggy and I didn't do anything special to make her verbal.  It's just Ellie.)

Despite the monologue that Ellie provides nearly 24/7, occasionally she says something that captures my attention and reminds me of how wrong my expectations were.

Yesterday afternoon, the girls and I were getting ready to go outside.  I told Ellie to put her Keens on. She asked where they were.  I told her to check the shoe bin.  The entire conversation was yelled back and forth between the kitchen and living room over a fussy baby.

Ellie walked up to me a few minutes later holding adorable little pink Chucks.  "Do these fit me, Mommy?"

I explained that I'd recently found them for Caroline with her old clothes but Caroline was still too little.

For reasons I don't understand, the conversation stood out to me later that night.  Not because of amazing content (although Ellie has good taste) but because it was an ordinary conversation, the exact type of ordinary conversation I spent my pregnancy wondering if I would even experience.

And as I had that thought last night, Ellie came and snuggled next to me on the couch.

"Hey Mommy, can you say 'FARTS!?'"

Because hey, she's five.

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Monday, April 4, 2016

New Perspective.

Ellie walked at two and a half.

She army crawled at ten months.

She cruised a little at 12 months.

Caroline is crawling and pulling up and even taking a couple little cruising steps and she's like a little wrecking ball.

So that brings me to perspective change #1: When kids meet developmental milestones later, they are more cognitively ready for their new skills.

So yeah, Ellie has a cognitive disability, but at 12 months, her cognition was I'm sure beyond that of a six month old.  Ellie had some knowledge of cause and effect, such as "if I keep crawling into that coffee table, my head will keep hurting."

As I'm sure you've guessed, Caroline at six months does NOT have cause and effect figured out.

Here she is, showing off new skills and hanging out in her crib, aka "the baby cage."

New perspective #2:  When I thought about hypothetical future siblings for Ellie, I thought about them taking care of her.

In reality, if Caroline is having a rough night, we have to bring her down to the basement and sleep with her down there because if Ellie hears any crying, she wakes up.

And yells at us, "MOMMY!  DADDY!  Caroline is CRYING!" and then she runs to her sister's room.  "It's okay Caroline.  You don't have to be sad.  Mommy will feed you."

Ellie the sleepless wonder is not only the best big sister, taking such good care of Caroline, but also the ultimate sleep training hurdle.

But as far as perspective, Caroline's earliest memories will probably be Ellie caring for her.  And that makes my heart happy.

Ellie is at school right now, and Caroline and I are getting ready to head out to her six month doctor's visit.  Everything is so different this time around.  Ellie's six month visit was combined with her "Hey, I just got out of the hospital from open heart surgery" visit and her shots had to be delayed.  We couldn't hold her under the armpits.  Caroline was over 19 pounds last month, so carrying her has its own set of challenges.

Off to the doctor we go!
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Wednesday, March 30, 2016

Vacation Wrap Up.

The beach.  The sun.  The water.

It was a good vacation.

A few final photo highlights:

Photo credit random lady on beach.

We're back to the grind today.  Ellie is at school.  Caroline has a cold and is asleep on the living room floor.  We have massive piles of clothing and kid supplies to unpack and put away and no food in the house.  But we're all a little sun kissed and salty haired.  (Don't think one or two showers can remove the amount of sand on my children.  They looked like churros.)

The next few weeks will be a return to routine with gymnastics and school and photo shoots.  But as the weather gets nicer, I hope the next few weeks will also feature some outdoor play!
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Monday, March 28, 2016

Always in Naples/Photo Highlights.

We vacation about once a year in Naples, Florida.  And without exception, we meet another family who has a child with Down syndrome.  (We often plan meet ups, but I'm talking about chance meetings.)

Easter was no exception.  We happened to sit near a family of six girls and one boy, and the boy has DS.  Ellie was of course delighted.

Other highlights have included the beach, the Children's Museum of Naples, and feeding giraffes at the zoo.  We went to the museum for sensory night, so there were very few children, extra sensory friendly experiences, and and additional staff on hand.  Ellie loved it.  At the zoo, we also met the Easter Bunny and a giant chick.  Ellie was thrilled, and I was grateful.  Caroline was unfazed.

Museum fun.

Baby blues.

We wouldn't let her eat sand.  She was angry.

All Ellie wanted for her birthday was to feed the giraffes salad in Florida.

Easter service on the beach.

The Easter Bunny is holding baby Caroline!!

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