A Special Treat Just For YOU!

Before I begin today's post, I'd like to mention something.  I am not unaware of all the controversy that has come to light this week regarding the bullying of special needs children by, not other children, but their very own teachers and aides.  I will be addressing this next week, more than likely in a few posts.  I just have so many disturbing thoughts and emotions running through my head that I don't think I can put together a coherent post yet.


In case you're not sure what I'm talking about, I'm just going to refer you to the blog, Solodialogue, written by my lovely friend, Karen.  She has a link to the video that has sparked a firestorm in the special needs community, as well as several other videos worth viewing. Be warned - your blood pressure will rise.  I was so upset, I couldn't even watch all the videos. Click here to go to Karen's post.  And if you do watch the videos, please save your comments about them for now.  I'd love to hear them next week.  I have something special to tell you about today and I don't want to take away from that.  Deal? Deal!


Now let's get on with today's post, shall we? 


Tired.  Worn out.  Frustrated.  Exhausted.  Fatigued.  Stressed.  Burned out. 


Do these words describe how you feel more often than not? 


Well, have I got a special treat for you today!


A few weeks ago, I was sent a free ebook called Your Creed of Care:  How To Dig For Treasure in People (Without Getting Buried Alive) by Caroline McGraw.

Isn't she the cutest thing??

Unfortunately, I was too worn out and busy to read it right away.  So this past weekend, I sat down, determined to at least start the book.  Well, lo and behold, I ended up reading the whole thing!  It was that good. 


When I emailed Caroline to thank her for the book and let her know how much I enjoyed it, here's how I described it:

"Let me say that if I had to sum up your writing in one word, I would say, peaceful.  As I read, I found myself just relaxing into the book.  I'm not sure if that makes any sense at all to you but I hope you take it as the compliment it is meant to be." 

I knew as I was reading along, that I needed to share the message of this book with all of you. 

But Caroline has gone one step further and written a message to each of you.  Check this out:

Hello Along Came the Bird readers! 

My name is Caroline McGraw, and I write about finding meaning in your most challenging relationships at AWishComeClear.com. Having connected with Lana, I'd like to invite you to receive a free copy of Your Creed Of Care:  How To Dig For Treasure In People (Without Getting Buried Alive). It’s a book about balancing the responsibilities of caregiving for an individual with disabilities with that of caring for yourself. It’s a labor of love, containing 60+ pages of true stories and essential insights on life alongside someone with a disability. It’s about living a life grounded in self-respect. It’s about loving yourself, so that you can love people with special needs from a place of peace.

Hearing Caroline describe the book, do you see why I wanted to share it with you?  We're all caregivers and sometimes, we need to be reminded to care for ourselves so we can best care for others.  

And yes, you read that right.  Caroline is including a link that you can click on to receive your own free copy of her lovely book!  Once you add your email address and confirm it, you'll receive your copy within 24 hours.

So, go download the book.  Then wait until the kids are tucked in and the house is quiet and you're wearing your most comfy clothes and drinking something yummy and start reading.  Let it soothe your soul and remind you of how very important you are to so many people.

Have a wonderful weekend! 

(Almost) Wordless Wednesday

Since we talked decor on Monday, has anyone considered a little red wagon in the living room? Just an idea...

Pinkeye and Prayers

Yes.

We've got it.

Well, Lily's got it.

The dreaded pinkeye.

So the Bird is home with me today.  Which makes writing a blog post rather difficult.

But I hate to miss getting to spend a little time with you so I'm pulling out another "post from the past" to share with you.

Truthfully, I meant to share this with you at the beginning of April since it's Autism Awareness Month and it just slipped my mind.  Something that happens rather frequently these days...

Any-who, check out this post titled, A Prayer A Day for a nifty gift from me (and Children of Destiny) that's just for you.

And if you feel like saying a little extra prayer for this mama who now gets to spend the day washing her hands thousands of times while entertaining a child who doesn't really feel sick at all, it'd be much appreciated.

Have a great Tuesday!

Making Your Home Special Needs Friendly

I wonder how many of you, like me, have uttered these words at one time or another:  "I will not re-decorate my home for my children.  I will not move things out of their reach.  I will not have toys take over my home.  I will teach my child to not touch what isn't his.  And I will teach him there is a place for everything and everything in its place."

No touchy-touchy, little kids!

Come on.  Admit it.  You know you've said something similar.

And then you had a child.  Or several.

And reality set in.

Through the years, I've made countless changes in my home solely because of the kids.

I mean, I was perfectly happy with an assortment of magazines and candles arranged just so on my coffee table.  But I was not happy with magazines ripped to shreds, then haphazardly tossed around, along with bites taken out of my candles.  So I surrendered and now have a perfectly bare coffee table top.  Not my idea of homey decor but hey, it's just easier that way.

Lit candles and dried flowers? Not a chance.

Having a special needs child can make decorating extra difficult.  Many of these kiddos have all kinds of different issues that need to be addressed in the home environment.  And sometimes, you just want your home to look nice, too!

By scouring the interwebs, I've come across several ways to make your home special needs friendly,  while still maintaining some order and a sense of fun.

• Rid your home (or specific rooms) of carpet and install flooring more appropriate for wheelchairs, walkers, IV poles, or other rolling equipment.
• Because carpeting helps absorb sound, if you remove it, your home may seem louder.  Place plenty of beanbags, pillows, quilts and throws around to help minimize noise. It also makes for convenient snuggling!
• Use washable fabrics and slipcovers whenever possible.
• Paint walls in soothing colors.
• Replace florescent lighting.  Take advantage of soft, natural lighting when possible.
• If your home does not have a security system, consider using battery operated wireless door alarms that will sound if your child opens a door.  This could even be useful on a bedroom door to signal you to any middle of the night wandering.
• Arrange your kitchen cabinets and drawers to encourage a little help for mom from the kiddos. I think Lily is capable of doing much more around than house than I give her the chance to do. For example, I'm pretty sure she could unload the silverware and sort it in the appropriate slots of the utensil tray.  Making cabinets and drawers more accessible might encourage me to teach more of these life skills to Lily.
• In our home, toilet paper does not reside on the holder.  Since it is might tempting for the Bird to dunk whole rolls in the potty or carry them into the shower with her, we store all TP in hanging baskets that Lily can't reach.

Now let's talk about the bedroom for a special needs child.

• Use black out curtains to block light and make sleeping a bit easier.
• Get a white noise machine to muffle sounds of family members who stay up later.
• Consider painting a fun mural on one wall of a child's room rather than hanging artwork in frames.
• If your child has a dresser, make sure the drawer pulls do not allow for climbing.
• We have large individual photos of family members hanging on a wire right at the ceiling level of Lily's room.  She can't reach them but since they're poster size, she can easily see them and she loves looking at them.
• The Bird has a television/DVD player combo in her room but it's wall mounted and up high so she can't reach it.  The plug is hidden behind the dresser but if I had my druthers, I'd have an electrician come out and install another plug up high behind the TV.
• If your child has medical needs and you need access to supplies throughout the day, consider getting a bedside table with locking cabinets.  Or organize supplies in the closet and put a lock up high on the outside of the closet door.
• Consider hanging a swing or leaving a mini-trampoline out for times when your child needs to calm down and get organized or burn off some steam.

Here's some shots of the Bird's room:

All washable slipcovers - yay!

The pictures on a wire I mentioned. And the table and chairs? No longer there. Someone kept using them for ladders...

Black out curtains

Of course, even with all these good ideas, there are plenty of days in which my home decor consists of laundry in a pile waiting to be folded, popcorn kernels scattered around the floor, sippie cups on the coffee table, fingerprints (and mouth prints!) smeared on the back door glass, and toys in every room.

But that's life.

And some days are just like that.  

I've learned to live with it.

Meet One of my Friends

I'm going to send you off for the weekend with an awesome and incredibly insightful post written by one of my new bloggy friends.

Bea, over at A Stroke of OT is an occupational therapist with 15 years of experience, 7 of those years being focused on pediatrics.  She is a wealth of information and I think you'll learn more than a few things from her.

Plus, she has one of the cutest baby boys I think I've ever seen.  You will definitely want to peek at her pictures of Baba.  I really want to just squish that baby up!  You'll understand what I mean when you see him.

Bea is beginning a brand new series titled Therapy Secrets and the very first post, Setting Up for Success, is up today.  Go check it out and then you can do what I'll be doing some of this weekend - taking pictures of our home from Lily's perspective.  Should be interesting and might even help me stay a tiny step ahead of the Bird!

Even if you don't have a special needs kiddo, the post will still give you some useful tips on setting up a great play and learning environment.

Have a terrific weekend!

The Art of Unagi

Before I officially begin this post, I have to give Ashley over at Stinker Babies credit for teaching me the concept of "unagi".  Click here to read her post, which inspired this one.


According to Ross Geller, of the television show Friends fame, "unagi is not something you are, it's something you have".

Here.  I'll just let Ross explain it a little further:

So how does "unagi" manifest itself in me?

Well, let me give you a little example.

Wednesday night, the Bird and I are the only ones at home, which can make multi-tasking a bit difficult. I simply can't leave Lily unattended for any length of time because there's just no telling what she'll get into.

Yet, even knowing this about my daughter, I still try to do several things at once.  

Because I am a glutton for punishment.    

We finished eating supper and I put Lily in the shower.  I really wanted to get the kitchen cleaned up while she was bathing playing in the water.  I thought this just might actually work for the following reasons: 

• Her bathroom is not that far from the kitchen.
• I can hear her from the kitchen.
• I removed all clean towels from the bathroom shelves so she wouldn't drag them into the water - a lesson I learned the hard way.
• I removed the soap.

Basically, there's nothing in her bathroom now except the toilet, the shower stall and the sink.

I pat myself on the back and head to the kitchen to start loading the dishwasher.  I check on the Bird a few times and she's perfectly content, filling and emptying cups of water from the shower head.

I continue cleaning the kitchen and suddenly, it hits me.  My unagi kicks in.  That state of total awareness.  That sense that something is going on somewhere in the house that should not be.

You know what I'm talking about.  That quiet that's just too quiet.  The quiet that's left after all sound has been sucked from the room.  

Yes.  It was that quiet in the bathroom.

My unagi propels me to immediately drop the cloth I'm wiping the table with and sprint to the bathroom.

Where I am greeted with the knowledge that I did not remove everything from the bathroom like I thought I had.

Nope.

I left the trash can.

Which Lily has pulled into the shower with her.

Thankfully, there was only one thing in it.

Not so thankfully, that one thing was an entire roll of toilet paper that Lily had dunked in the potty earlier and I had rescued before it was completely submerged.

There is toilet paper completely covering the floor of the shower.  Wet, soggy, sticky blobs of toilet paper in piles of all sizes littering the stall.  Even the cardboard roll had disintegrated and started to biodegrade in front of my eyes.

And what is Lily doing?

Sitting in the middle of it all, grinning from ear to ear, picking up piles of the soggy mess, dropping them into the garbage can, adding a little water, and then dumping it all back out again.

And what do I do?

Sigh.  Turn off the water.  Grab a squeegee and start scraping up the mess.  Trying to convince the Bird this isn't a good activity, all while she's looking at me, grabbing my face by the cheeks, kissing me, and trying to tell me without words how much fun she had.

Maybe my unagi is getting a little rusty.

But at least I got a clean trash can out of it.

(Almost) Wordless Wednesday

At the Special Needs Expo last Saturday, there was one of those kiddie train rides.  While Lily enjoys a good spin on a choo-choo, she was ready to move on to... hmmm.... more mature entertainment, shall we say?

Some wonderful friends of the family just got hired at our church which means they have moved to Austin.

And they have a Volkswagen Bug Convertible, a much more suitable ride for the Bird.

Here's Mr. Jeff and Lily scoffing at the babies on the train.

And of course, a good convertible ride isn't complete without a snack.

"What are you waiting for? Let's go to Target!"

For those of you who might be concerned about the lack of a car seat, rest assured we never left the church parking lot.  But next time, it's a car seat and the open road, baby.

Special Needs Expo & Sensory Bins

Every year, our church hosts a big Special Needs Expo.  This year's Expo was this past Saturday.

Special needs service providers and vendors set up tables displaying what they have to offer.  There's all kinds of stuff like therapies, camps, horseback riding, pediatric dentists, service dogs, schools, GFCF meal planners, specialized equipment, respite providers.... the list goes on and on.  Our school district comes and educates parents on how to get their kids enrolled for classes, whatever their needs may be. It's a great chance for parents to see what all services are offered for special needs families here in our area.

This year, our Special Needs Director decided to add some fun stuff for the kids to do while their parents were perusing the offerings.

There was a bounce house, which Lily has finally decided she really likes.

But by far and large, her favorite thing of the day was those little styrofoam packing peanuts.  Now, the idea behind this was to dig for buried treasure.  A little wading pool was filled to the brim with those peanuts, hiding bags of Skittles, fancy pencils and stickers for the kids to find.  

Well, my kid wasn't interested in looking for treasure.  Because of her sensory issues, it came as no great shock to any of us that she wanted to sit in the pool, run her hands through the styrofoam, and cover her legs with the peanuts.

Thankfully, there were many willing volunteers who were only too happy to oblige the Bird.

Can you see that sweet little smile on her face as she's being buried?

And I was happy that she never tried to eat those peanuts.

I think you can tell it made a fairly big mess, but I believe Lily would've sat there all day, perfectly content.  And that makes that big mess pretty much worth it to me!

Lately, the Bird has been doing more digging and exploring like this.  It seems to have a calming effect on her.  And since she's not mouthing everything at the moment, it makes this kind of sensory play more enjoyable.  We'll be trying out several of those sensory tubs that I always see floating around Pinterest.

However, I think our sensory bins need to be in a plastic swimming pool since Lily Bird likes to use more than just her hands to explore.

Interested in creating some of these bins yourself?  Kid's Activities Blog has this great list of all kinds of "touchy-feely" items.  Check it out:

 

Courtesy of Quirky Momma Kids Activities Blog

Be sure to visit Quirky Momma Kids Activities Blog for even more sensory play ideas.  And of course, Pinterest!  Come follow me over there, too!

Have a great Tuesday!

From the Archives...

Happy Monday!

I thought I would kick the week off with "a post from the past".  This particular post was not only here on Along Came the Bird but was also part of the "What I Want You to Know" series over at Rage Against the Minivan.

Click here to read Where's the Love?? from January 5, 2011.

Also, if you're taking part in the Ultimate Blog Party 2012, don't forget that tonight is the live Twitter party. Here are the details - check out those prizes!!!

The Twitter Party

This year’s #UBP12 Twitter party is being sponsored byAbingdon Press. They understand all about what us moms go through so we will be chatting with Judy Christie, author ofHurry Less Worry Less for Moms and talking about what our lives are like as busy moms.

During the Twitter party, we will be giving away 3 $100 Target gift cards, 10 signed copies of the Hurry Less Worry Less for Moms, and the grand prize is a Nook Color!

Twitter Party Details:

What: Join @5minutesformom, @abingdonpress, @janicecroze, @susancararetto and@judypchristie for the #UBP12 Twitter party

When: Mon April 16th from 9:00pm until 10:30pm Eastern RSVP HERE

Where: Follow the hashtag #UBP12 for all party tweets and prizing!

 I'll be there so if you want to follow along, my Twitter handle is @lanalrush.

Have a great day!

A Little Housekeeping

Just a few things before the weekend arrives and I totally check out:

I can't believe I forgot to tell you but I did a guest post over at 5 Minutes for Special Needs on Monday.  Click here to read it.  For those of you faithful followers, you'll probably recognize the post.  But if you missed it, it's worth a read and a good way to get to know the Bird and I just a bit more.

Lately, I've not been great at responding to your comments that you are so nice to leave for me.  I've backtracked and replied to each and every one of you so go look and see!  And please keep leaving comments because I love to hear from you!

Think about giving the "Lily Pad" a try this weekend.  I'm telling you, it's the first thing in a loooooong time that kept the Bird so happy and engaged that I could actually sit on the porch swing and relax! We'll be breaking it out this weekend, I assure you.  If you do give it a try, send me a picture, ok?

Have a great weekend, folks!

Ultimate Blog Party 2012 and You're Invited!

It's time to break out the party hats, get ready to meet new bloggers and maybe even win some fabulous prizes!  It's time for the 5 Minutes for Moms Ultimate Blog Party 2012!

Not sure what the Blog Party is all about?  Watch this quick video for details.

For those of you new to these parts, arriving because of the Blog Party, please allow me to introduce myself.  My name is Lana and I am a preacher's wife and mom to three daughters, the youngest of which has autism.  Her name is Lily, though she is more often called "Bird", thus the name of this blog: Along Came the Bird.

I blog five days a week, mostly about special needs and the impact it has on our family.  But I also have plenty of things to say about all kinds of stuff so you can never be too sure what will show up here.

Want to know more?  Check out my About Me page for the all the nitty-gritty details.

And here are a couple of posts that might help you get to know me even better:

The Story of the Bird
This is OUR Story

To celebrate the Ultimate Blog Party, I'll be just one of the many, many people doing a give-away!  And it's a good one, if I do say so myself!  Check this out:


A kid-friendly, drool-proof, very durable iPad Case from Fisher Price.

Click here to be entered to win this, or any of the other amazing prizes.

And here's the agenda for all that will be going on during the Ultimate Blog Party 2012.

Why don't you go ahead and RSVP for one or all of these fun events?  It's a great chance to broaden your "blog horizons", learn some new things, and again - those prizes!!

Looking forward to the fun!

Giant Squishy Sensory Mat - A Total Backyard Win

Have I told you lately how much I love Pinterest?

Well, I do.  

And so does my mother-in-law.

While perusing Pinterest one day, she saw a picture of this giant squishy sensory water mat/bag thing (also called a "redneck waterbed" by Play at Home Mom) and decided it would be just perfect for the Bird.

The Saturday before Easter, she and my father-in-law put it together and Lily dropped by the house to try it out.

Can you tell from the pictures that she loved it?

And just in case you're not 100% sure how much the Bird liked it, click here to watch a little video.

If that wasn't enough, on Easter Sunday afternoon, we doubled the fun factor by placing a kiddie water sprinkler right alongside one of the edges of the mat.  So the mat itself was squishy AND the top of the mat was wet.  

Lily thought she was in heaven.

She would step off into the grass then come running back onto the mat like it was a slip and slide.  

She must have played on it for 30 minutes, which is quite a feat.  I'm pretty confident she would've played even longer but I was afraid she was going to get sunburned.  The Rush Family is not made up of "bronzed beauties", unfortunately.

I don't have any pictures or videos because last year's bathing suit was a little snug so Lily spent the majority of that 30 minutes topless.

Now, I'll be honest and tell you that our mat ended up leaking some.  But with the water on top of it, too, Lily didn't mind at all.  

Needless to say, this squishy mat is such good, clean, cheap fun, that we'll definitely be using it again. And again. And again.

If you'd like to make one yourself, click here for directions.

Also, if you have any ideas for making the mat just a bit more sturdy, feel free to pass them along! Two things we thought of:

• Rolling some large beach towels along the inside edge of the mat to help "reinforce" the duct tape.
• Placing some good sized PVC pipe or pool noodles along the edge of the mat to create a "frame" to also help "reinforce" the duct tape, removing some of the pressure.

Score one for Grandma and Grandpa!

Wordless Wednesday

Just chillin' with Dad.

This One's For the Grandparents

Since it was Easter, Ryley got out her good camera so we could snap some photos.  I took a few shots of Ryley, who looked at them and promptly fired me on the spot.  Something about how I don't "frame" shots well.  

 Fine then.

Reagan

Ryley

By the way, when you talk about what a bad photographer your mom is, sometimes your mom has no choice but to photo bomb your pictures.

Boom.  Bam.

The Hunt

Saturday was a big day for Lily Bird.  Our church hosted an enormous community-wide Easter Egg Hunt, including one just for special needs kiddos.

When we arrived, Lily quickly ditched me in favor of "Auntie Sharon", one of her all-time favorite blondes and one of my best friends.

Sharon has lots of energy (need evidence? see the flying ponytail below.) which comes in handy when hanging out with the Bird.

Lily was especially social this particular day and happily made the rounds, catching up with all her favorite people, including "Uncle Steve". 

After some socializing, it was time to get to work.  Those eggs weren't going to hunt themselves.

Lily did a great job picking up eggs and putting them in her basket.  Of course, she did it on her terms - picking up a couple plastic eggs, then running off to say hi to someone, and then coming back to pick up a few more.  Good thing it wasn't too cutthroat in the special needs area!

"Uncle Clay" (Sharon's husband) helped the Bird crack open a couple eggs to see what was inside.

Then the two of them settled down for a little snack break.

Watching her during the festivities, I couldn't help but think how far Lily has come since last year.  

She knew to pick up the eggs and put them in her basket.  She knew there was something good inside the eggs so she got some help getting them open.  While she may not win any awards for speed or bulk, we were just so happy to see her having fun and enjoying herself.

It was a really great day.

Happy Easter 2012!

If you'd like a full-size printable in a choice of colors, visit Willow of Wonder.

News You Can Use - Volume 3

Here it is again.

Great stuff from around the interwebs.

All in one place.

All for you.

Since Easter is this weekend, how about trying this fun Easter Egg Lunch Hunt for the kids?

photo courtesy of Gluesticks

Lily is definitely motivated by food so I think this just might encourage her to look for those plastic eggs again this year.  (Click here to see how I got her to hunt last year.)

I am really liking these 12 Creative and Cute Sensory Bins and thinking we might try a couple of them out over the long weekend.

In my house, the countdown to summer has officially begun.  And summer means that many of us will be traveling.  Here are 7 Travel Agencies Specializing in Special Needs Travel that might make those trips just a bit easier for everyone.

And keeping those kiddos occupied while on the road or in the friendly skies is no problem for you.  Why? Because you know of 11 Online Toy Stores for Children with Special Needs that are sure to have something (or lots of things!) your child will love.

If you're a parent who worries about your child with special needs wandering away, here's some great news:  Emseeq by EmFinders can help you keep track of your child through the use of cell phone technology.

 

The device can be worn on the wrist like a watch, or around the ankle over socks.  And here's something impressive - the device can only be removed with two hands and a key, especially important if you have a child like mine!

Now, a News You Can Use post would not be complete if we didn't talk about apps and tablet cases, right?  I am constantly looking for the best case to protect these expensive devices and Lily is almost always able to outsmart those supposedly indestructible cases and then this happens:

Just to let you know, Lily has been banned from iPad use in our home until I come up with a better solution.

  

So I'm walking through Toys R Us one day a couple of months ago and something catches my eye:  this Laugh & Learn Apptivity Case by Fisher Price.  It's for an iPhone or an iPod Touch.  

I wondered if it might work for the Bird's Touch.  Yes, it looks babyish but I knew Lily wouldn't care.  But what sold me?  It was $14.99.  I've easily spent double that (or more) on cases that have been an utter failure.  I figured $15 wasn't too much of a risk if it didn't work.  

I want you to know, that cheap case has worked better than anything else I've tried!  Lily can't take it off (nothing short of a miracle) and it's been dropped and licked and chewed and even took a quick dip in the potty and the Touch just keeps on ticking.

Best news of all?  They now have the same kind of case for the iPad.  

Oh joy!  Once I buy one, the Bird just might get to use an iPad again!

At Lily's school, they use a touch screen desk-top computer for certain tasks and the Bird loves it.  While I would love to reinforce some of those skills she's learning on that computer, the only trouble is that I don't want to buy a touch screen computer - and we've just seen how well the iPad is working for us now.  So I was super excited to discover this portable touch panel usb that turns any monitor into a touch screen!

photo courtesy of Tips 4 Special Kids

I'm the only person in my family that still uses my trusty Apple desktop because it has an enormous screen that I don't have to squint or reposition to see and that makes me happy.  But I'm thinking if I buy one of these touch panels, I can set Lily up at my computer and we can do some of the more educational apps without a mouse and keyboard.

And since we're on the subject, how about a great list of 32 Apps for Toddlers?  I know lots of our kiddos are no longer considered toddlers but many of these apps teach some skills that the Bird still needs to learn and practice.

Rounding out this edition are two links just for us parents.

One, a list of 25 Clever Ideas to Make Life Easier .  My personal favorites?  The rubber band around the apple and the bread tag cord labels.  Don't forget to click on the bottom of the article for 25 more clever ideas.

And lastly, alternaVites is a quick dissolving vitamin powder (think Pixie Stix) that your child just might enjoy taking, thus also making your life a little easier. 

Well, that's all folks.  

Except for this - since tomorrow is Good Friday and all my girls are home, I'll be taking the day off to hang out with them.  But I'll post a little Easter note on Saturday or Sunday so be sure to check back!  

Have a great Thursday!

A Family Picture

Hey!

Guess what?

A few weeks ago, I was asked to write an article for the fantastic website SpecialNeeds.com.  Have you visited there yet?  It's got tons of valuable information about all kinds of special needs.  You really need to check it out.

The editor asked me to focus on having a "surprise" third child with special needs and how we adjusted (and are still adjusting!) our lives for the changes this brought about in our family.  Then she asked me to share any helpful advice I might have for other families in this same situation.

Are you curious?

Then click here to head over to SpecialNeeds.com and see what you think.

And while you're there, be sure to browse around the website.  I think you'll like it!

Have a great Tuesday!

This Is OUR Story - World Autism Awareness Day

Today, April 2, is World Autism Awareness Day.

There has been so much recent talk in the autism community about hate versus acceptance.

As in, how can you hate autism and expect acceptance?  And if you hate autism, are you at risk of projecting that hatred onto your child, who then comes to believe that you hate him because of his autism?

To quote Brenda, from the blog, Mama Be Good, hating autism is unacceptable.  She wrote a very thought-provoking post about this topic and I want to highlight just one paragraph that she wrote:

April is Autism Acceptance month.  Not just awareness, but full-on acceptance, embracing the ups and the downs.  Not "I accept parts of autism,  the ones that are easy."  Not "I accept parts of my child."  But "I embrace my child, every single part of him, easy and difficult."  And "I acknowledge that hating an inherent, biological part of my child is unacceptable."  

I totally agree with her statement - "I embrace my child, every single part of him, easy and difficult."

I embrace all three of my daughters whole-heartedly and unconditionally.  I love them no matter what, forever and ever.

But here's where my heart gets troubled:  I don't want to accept autism.

Now before you get all mad and start firing off ugly comments and vow to never read this blog again, let me explain myself.

I am 100% willing to accept autism (or any special needs, for that matter) as a whole.  I am a compassionate person and I've raised my big girls to be the same way.  I believe special needs individuals have as much to offer our world as any neurotypical person.  Maybe even more so.

But I'm not ready to accept autism in my daughter.

And I want to tell you why.

Most of you know, Lily was a surprise for our family.  And to be perfectly honest, I spent much of my pregnancy trying to come to grips with this unexpected change in my plans.

But one night, I got an incredibly clear picture of how much I loved and wanted this precious baby girl.

After Lily was born, on day five of her life, in the middle of the night, she quit breathing.

Ryan rushed that tiny child of mine into the living room, laid her on the rug, and began performing rescue breathing, all with tears streaming down his face.

I called 911 and was literally screaming hysterically into the phone that my five day old daughter wasn't breathing and we needed immediate help.  The operator stayed on the phone with me and honestly, I remember her talking.  But I wasn't listening anymore.

Because at that very moment, I began pleading with God - "I want this baby!  Don't you dare take her from me!  I want her!  PLEASE!"

After nine months of uncertainty, all it took was a frantic few seconds of thinking my daughter might not live to convince me that beyond a shadow of a doubt, I wanted this baby girl.  I chose her.

An ambulance ride and a long stay in the hospital revealed that Lily had a large hole in her heart that would require open heart surgery.  Also, her kidneys were not fully functioning and she had severe GERD.  She also had pyloric stenosis, which would need surgical repair.  Needless to say, we spent the majority of Lily's first four months of life in the hospital.  I kept a hospital bag packed in my closet, ready to go at a moment's notice.

At four months of age, we temporarily moved our family to a little apartment in Houston, where Lily would be having her heart surgery.  We were there for a month.

When we arrived back home in Austin, Lily was well.  Her heart was perfect, her kidneys were on the road to recovery and our girl was good.  She began hitting all those lovely developmental milestones, of which I had been watching anxiously for since children who have heart surgery can sometimes be delayed.

Lily Bird was a joy.  By the time she was 14 months old, she was walking and talking.  She was reading books with us, shaking her head, and pointing to things we asked her to.  She loved doing the hand motions to "Itsy Bitsy Spider".  She would walk into the church nursery and say, "Hi there!"  She would smile for a camera and say "uh-oh" when she dropped something.

And then came the unexpected, yet again.

Around 19 months of age, Lily began regressing, losing skills at a fairly rapid rate.  No more waving.  No more singing.  No more talking.

Our baby girl was gone, locked inside herself, in her own world that none of us could penetrate or understand.

We immediately began searching for answers and seeking medical help, visiting doctor after doctor, specialist after specialist.  Lily began multiple therapies.

At the age of 3, Lily received an autism diagnosis.

And while she has grown leaps and bounds since that day, she is not the baby girl I remember.  She is not that little girl we had for those too brief months.  My daughter was not born this way.

So why do I not want to accept autism?

Because I truly believe autism is holding my daughter captive.

Oh, she's still my daughter, no matter what.  And I still love her unconditionally, with every fiber of my being, all the more because I chose her.  If she stays this way for the rest of our lives, so be it.  And she will never hear the words, "I hate autism" cross my lips or see them on this blog.

But autism makes me mad.  And sad.  And frustrated.

Because I believe it's holding that little girl that I remember captive.  That little girl I remember is in there somewhere, buried underneath a brain that somehow got confused.  A hostage of a mind that no longer works as it used to.  

It's those feelings that spur me on and keep me fighting to win back that little girl I just can't forget.

But if that little girl never returns to us again?  I'll still keep fighting for her.  To make her life count for something.  To have her become exactly the person God intended for her to be.

And I will love her, forever and ever, no matter what.

Do I hate autism?  No.

Do I accept autism?  No.

But that's just my story.


If you'd like to hear Ryan and I tell "The Story of The Bird", click here.  The story starts at about 12 minutes.