The Story of The Bird

If you've been a faithful follower of the blog, then you know that our Lily has a very colorful history, even though she's only been around for a little over 8 years now.

But maybe you're new around these parts. Or maybe in the midst of the book recommendations, recipes, and things that make my life easier, you've never really heard the whole story.

So here it is.

Nine years in about 30 minutes.

It's not an easy story to tell. But it's our story. We've learned a whole heck of a lot along the way. And we continue to learn more almost every single day.

I hope and pray that some of what we have learned will help you in some small way.

Got a question? A comment? A lesson you've learned? I'd love to hear from you. We're all in this together so let's get real and talk about it.




"Overcoming Fear with Gratitude" Sermon 11/30/14 from Kingsland Baptist Church on Vimeo.

Sweet Stories

As Lily gets older, I'll admit that taking her out to certain public places can cause me some anxiety.

Especially those places where other children might try to engage with her, to no avail.

As parents, we so wish for our children to have playmates but when your child is not easy to play with, it's no wonder that most kids give up and move on.  And we often hear terrible stories about special needs children being left out or teased or even bullied so it's a constant source of worry - the desire for friendship, which can be risky, versus the desire to just isolate and protect because its easier.

But every now and then, when you least expect it, people can surprise you.  And restore your belief in the goodness of society.

When we were in Aspen, Lily's two favorite places to hang out were the porch off our condo and the Aspen Recreation Center.

The ARC is just a short walk from the condo so our morning routine consisted of a leisurely breakfast, followed by a brisk walk along Government Trail for Ryan and I with Bird in the BOB jog stroller, and ending up at the ARC for a swim.

The Rec Center has a huge indoor kid water entertainment area with sprayers, slides, drenchers, and a lazy river and no part of it was too deep for Bird.  I think she did that little blue slide 500 times by the end of our two week stay.

The lighting inside the ARC is terrible for pictures but I think you can see that Lily Bird enjoyed herself.

Because we usually arrived fairly early, it was never crowded.  In fact, a couple of times, we pretty much had the whole pool to ourselves.

One day, a group of probably 10 year old girls were hanging out in the pool.  I was sitting on the deck and Ryan was in the pool. Bird was making her usual verbalizations and they were kind of echoey and loud.  I saw the girls look over at her a few times  but they more or less ignored her, which was fine with me.  I just didn't want them whispering and pointing.

So imagine my surprise when a girl swam right up to Ryan and Lily and said, "What's her name?"

Ryan said, "This is Lily.  She doesn't talk, though".

And this precious girl then said, "Oh.  That's ok!  There's a boy in my class who doesn't talk either but he's very nice."

Ryan conversed with Kayla just a minute more, then we got ready to leave the pool and she swam off to join her friends, having thoroughly stolen our hearts.

I so wished I could've met her mom to tell her how proud she should be of her sweet daughter.

Lest you think all the nice people are in Aspen, let me tell you another quick story.

Just the other day, Ryan and I took Lily shoe shopping.  After purchasing some brand new kicks for Bird, we headed next door to Elevation Burger for some lunch.  

The three of us are standing in line at the counter, with Ryan and I are intently studying the menu, waiting on our turn to order.  Unbeknownst to us, Bird turns around to the table behind us and helps herself to a cup of ice water.  

Which would have been perfectly fine had it not belonged to another customer who was already eating lunch.

As Lily turns back around, drinking the water, Ryan and I both look down, see the cup, and start trying to figure out where on earth she got it.  We both turn around and see the table sitting right there behind us, like a Birdie Buffet.  And we also see the couple sitting there, staring at us and our kid who just swiped a free drink off their table.

I immediately begin apologizing profusely, worrying about how these people are going to respond.

I have my hand on this woman's shoulder.  Ryan is offering to buy another drink.  Lily is digging for ice in the "stolen" cup.  We are all up in their personal space.

And this sweet woman grabs my hand and says, "It's fine.  Just fine.  It was just water.  I hadn't even drunk any of it yet."

I'm still apologizing.

She's still just calmly reassuring me it's not a big deal and to quit worrying about it.

And you know what?  She really means it.

We have a good laugh with this sweet couple, then we move on to get our own lunch, keeping a closer eye on the Bird.

With a much greater appreciation for the patience and understanding of total strangers.

Sometimes, in the midst of the hustle and bustle of everyday life, it can be hard to remember that most folks really are just nice people.

Here's hoping we all take a few minutes to notice it this weekend.  

And maybe even get a chance to put a little kindness into action ourselves.

A Dream for my Daughter

At this very moment, Ryan and I and the girls are in Aspen.

Bliss.

So maybe I've got just a little too much free time right now.

Or maybe I'm on a "Rocky Mountain High".

But I've been thinking just a bit about the Bird's future.  I mean, way-off future.  Since thinking about what the future might possibly hold for Lily typically produces nothing but a bunch of anxiety and fear in me, I try to avoid it at all costs.

I think it makes me nervous because there is so much unknown.  Will she talk?  Will she graduate from high school?  Will she drive a car?  Will she ever live on her own?

I just don't know.

Raising a child with special needs is challenging.

Challenging because our kids don't fit the mold.

They are different.

And the general population doesn't always know what to do with different.

Yes, we've come a long way since people with special needs were sequestered away from society in asylums.  Or when parents were told to place their children in homes because they would never progress and would be a burden on the family.

Yes, we have learned that many of these special needs individuals are highly intelligent and very capable of learning.

Yes, there are many services available today for our kids to help ensure that they can be contributing members of society and have a bright future.

But here's where my thinking starts to veer off course just a little.

Many of those services are about conformity.  Teaching our kids how to function in society with their peers.  How to sit in a classroom with others without causing interruptions.  How to write with proper pencil grip on lined paper.  How to appropriately walk the halls of a school.  How to check out a library book.  How to do a project for the science fair.

Yes, exceptions are made so that our kids can participate in these tasks and be successful.

But at the end of the day, the goal is to end up completing those same tasks as their peers.

Our kids may take a different route but the final destination is the same - do what their peers are doing.

Now, I don't have a huge problem with that.

Our kids do have to learn how to appropriately attend school and all that entails if they are going to attend school.  I don't believe we should be sending them to school for free babysitting.  There should be active learning taking place, even if the starting place is simply learning how to behave at school.  Let's face it - it's going to be hard to teach a kid how to read if he can't sit still.

But it is an undeniable fact that our kids work hard.  When a typical child attends school, things like lunch, recess, and PE are essentially breaks.  For a special needs child, there are no real breaks.  Lunch, recess, and PE are just more opportunities to practice skills that help them "conform", to blend in and be more like their peers.

As long as a child is continuing to learn, to meet educational and behavioral goals, and is progressing successfully, then there is no reason to assume that the course of "conformity" is having any negative impact on him.

But I can't help thinking beyond the school years.  To the time when Lily is 18 or 20 years old.

What if she doesn't want to conform anymore?

What if she's still nonverbal and doesn't really want to use a special device for communicating?

What if she's happy just doing something simple, something that gives her immense satisfaction and joy, but doesn't really count towards the statistics showing that she could be a highly functioning member of society?

For example, what if sketching all day long makes her happy?  Or tending chickens and goats brings her joy?  What if writing stories makes her feel peaceful?  Or gardening makes her feel productive?

Will I be ok with that?  With allowing her to do just that?

Or deep down inside, do I want her to keep pushing, to keep working so very hard, to keep "conforming", like I might expect her to do if she didn't have special needs?

While I obviously can't see 12 years down the road, and many things will change between now and then, I do want to reach the day when Lily is able to make her own decisions.  And when that day comes, I want to be respectful and supportive.

I want to help her achieve whatever it is that brings her joy.

I am not concerned with my child being a special needs success story in the eyes of the world.

I am concerned with my child being a special needs success story in her own eyes.

And in the long run, isn't that what really matters?

A Story To Make You Smile

Imagine you are a waiter.  

You are waiting on a group of four adults and they request to be moved to another table.  As you are making the switch, you overhear them make an offensive remark about another family in the restaurant.  A family that just happens to have a five year child with Down's Syndrome. 

The remark?  "Special needs kids should be kept in special places".  In other words, special needs kids should be kept hidden away from public view where they might bother someone who is trying to eat. 

What would you do?

Say nothing?  After all, if you speak up, you might not only lose a tip that night, you might lose your job.

Now stop imagining.

Because I didn't make this up.  

Michael Garcia is a real-life waiter at Laurenzo's Restaurant in Houston, Texas and this exact situation happened to him.

And what did Michael do?  He rose to the occasion and has become a local hero.

Here's a great feel-good story that'll make you smile and serve as a gentle and happy reminder that while it sometimes seems the world is overrun with jerks, there are still a whole lot of amazing people out there. 

Michael Garcia, Waiter who Defended Boy with Special Needs, Gives Donations Away

It's people like Michael that reassure me that I can do this special needs parenting thing.  A kind word, a  smile that isn't one of pity, an offer of help, including Bird in conversation all the while knowing she can't respond, standing up for my child and others like her.... these are the things that keep me going.

So.  Have a fun weekend, sweet ones.  And if you, like Michael Garcia, get the chance to be amazing, I hope you'll do it!

Five Favorites: Special Needs Books

I am a total bookworm.

I love books.

I mean, I love books.

Probably a tiny bit too much.

But hey, there are worse vices in life, right?

And I've gotten over my need to own ALL THE BOOKS and I actually utilize the library quite often these days.

Today, I thought I'd share with you my top five favorite special needs books - the ones that helped me in the early days of diagnosis, the ones that inspire me, and the ones that I reach for time and again.  Maybe a few are familiar to you?

1.  Mother Warriors by Jenny McCarthy.  I know what you're thinking.  I'm not a huge Jenny fan either but this book gave me hope that I myself, just a little ol' mom, could take on whatever challenges were before me and conquer them.  Pretty motivational stuff.

2.  How to be a Sister: A Love Story with a Twist of Autism by Eileen Garvin.  This book gave me a unique look into how my big girls might feel about having a special needs sibling and what the future could look like for all of them.

3.  The Myth of Autism by Dr. Michael Goldberg.  The book that answered so many of my questions about Lily, ultimately gave us her real diagnosis, and confirmed that she does not have autism.  This book is the reason Lily is a patient of Dr. Goldberg's today.

4.  The Out of Sync Child (and companion book The Out of Synch Child Has Fun) by Carol Stock Kranowitz.  Introduced me to the concept of sensory processing and showed me all kinds of "out of the box" ways to engage Lily in play.

5.  The Everyday Advocate by Areva Martin, Esq.  This book continually teaches me how to stand up for Lily, how to assert myself, and how to get some results.  Some pretty good how-to's there, don't you think?

Got some more to add to the list?  Leave a comment and share it with everyone.  There's power in being informed.

Have a terrific weekend, my lovely readers.