Tuesday, February 17, 2015

Post #1: Where Are They Coming From?

More than a few people in my real-life and social media circles have been struggling lately with issues related to inclusion.

I don't have a perfect situation for either of my children who currently attend public school.  There are aspects of their education that I think could be improved upon.  I am constantly reminding myself that it's FAPE, not FIPE, and they're entitled to an appropriate public education... not an ideal one. 

I still have a great deal to learn about special education and inclusion.  As with all topics I file under "Gray and Sticky Territory" I learn best when I consider them in a variety of ways.

For that reason, I'm writing a (potentially boring) series of posts on the topic of inclusion.  Not because I have a lot of expertise to give, but because I have a lot of questions worth asking...

Where are they coming from?

When LC was born with multiple congenital heart defects, she was weekly monitored by our pediatrician, Dr. Winburn.  Early on...before LC was even a month old...we were told by Dr. Winburn that LC would benefit from being seen by a pediatric cardiologist. 

I heard the referral as Dr. Winburn's way of saying, "This diagnosis isn't within my skill set.  I'm a general practitioner.  I'd feel more comfortable if you were getting advised by someone who specializes in the condition your child has."

I wasn't offended by the referral.  I didn't feel like Dr. Winburn didn't think LC belonged in her office or under her care.  I didn't feel rejected or refused.  I felt referred.

When you approach a general educator with a request for full inclusion and you sense (or hear directly) that the teacher would prefer your child receive instruction in a resource room from a special educator, you rarely feel referred. 

You hear, "Your child doesn't belong with typically developing children."

You hear, "Your child isn't good enough/smart enough/well behaved enough to be with normal kids."

You hear, "Your kid is a burden and there's a tiny room at the end of the hall intended for kids like your's."

But...what if...instead of listening for the rejection, you heard the referral?

Where are they coming from?

When you speak to a general educator, you're speaking to a professional.  And you're talking to someone who CHOSE to be a GENERAL educator.  They considered their own talents, interests, passions and gifts and believed those would be used to the greatest benefit instructing a mixed group of typically developing children with a moderate range of learning abilities.

They didn't choose their profession because they didn't like your kind of kid.

They chose a profession that...by definition...never asked them to specialize in your kind of kid.

And now...with your inclusion request...you have just presented that general educator with a legally binding document that requires the teacher to make some specific things happen with a specific kind of learner in a specific amount of time.

You have asked the pediatrician to perform the heart surgery.

Does a pediatrician have the skills necessary to get the job done?  Would a pediatrician willingly race into that operating room?

Not without a lot of training.  Not without a heckuva lot of support.

And all of that will be considered in a later post in the series.

But for now, I'm asking you to simply stop at the moment you hand the pediatrician the scalpel and consider their probable response.

It might just save your own heart.

What if you're hearing, "I don't have faith in your kid's ability to learn" when they're saying, "I don't have faith in my ability to teach."

What if you're hearing, "I don't want your kid in my classroom" when they're saying "I can't accept a student into my classroom when I know it means I'm dangling promises in front of them I am not professionally  equipped to keep."

There is a world of difference between "That kid doesn't belong here" and "I am not currently able to do right by that kid".

Where are they coming from?

Your willingness to consider the classroom teacher's situation can set the tone for the entire process that follows and be the one question that ensures your child has an educational team actually capable of supporting them in order to reach their learning goals.

Surely, it's a question worth asking.

Monday, February 16, 2015

This Heart

I don't know how I survived the stopping of the tangled, strawberry-sized heart that was repaired six years ago today.

I only know that the one inside her tiny brown chest is

bigger than mine

kinder than mine

more courageous than mine

and it operates by a far more accurate compass.

Never was a heart more worth saving.

Happy Heart Day to you, Pudge.

Thanks for coming home.

Thursday, February 5, 2015

A New Shirt for Effie

It's going to be her "Let's Go to Wal-Mart" shirt.

Also, her "Let's Go to the Grocery Store" shirt.

She'll probably require that it have Thomas the Tank Engine on the front.

That's fine.

We'll need it in multiple colors, I'm guessing.

This is what will be screenprinted on the back.

She's the third kid I've raised past the age of two...if she makes it...and my first tantrum thrower.

Give me strength or alcohol...#Downsyndromeforthewin

Tuesday, February 3, 2015

Five Fingers Up...

Happy Heart Day, kid.

You're lots more than we bargained for.

And infinitely more than we deserve.

Thanks for coming home.

Friday, January 9, 2015

Facebook Friday

On Fridays (when I remember/have 4 minutes to myself in order to sit down at the computer) I go back through some of my Facebook posts from the week and share a few postings in an attempt to keep you relatively updated on our family....it's my feeble attempt to compensate for being a lethargic blogger.  

The trick to surviving a 4 1/2 hour drive with multiple squibs...take along snacks that you can toss into the backseats while you continue driving. LC is the champ at catching Teddy Grahams. When it comes to mini Chips Ahoy, Geb is no slouch. And, it must be said, I'm a pretty good shot. I need to get a video of it to submit along with my resume if they're ever hiring sea lion feeders at Sea World.

    (We did a lot of holiday traveling.  Totally worth it...but totally exhausting.  And the floor of my van remains under an inch and a half of travel snacks.)

You can tell me she doesn't take after her father, but I have a wealth of evidence that proves otherwise...

 We went to a family wedding over our Christmas vacation.  It was all sorts of wonderful getting to love on people we don't have the opportunity to hug on in person often enough.

Lately, I've noticed my affinity for delivery pizza rising while my commitment to daily exercise has been crumbling at an equally swift rate. Which led to the following evening conversation:
Me: Justin, you think I'm cute?
Justin: Yes.
Me: Hypothetically...how much weight could I gain and still be cute?
Justin: 35...40 pounds?
Me: You know I was 60 pounds heavier than this with each of my last pregnancies, right?

This kid had a birthday since you've last heard from us...we caked him up.  

I'm nearly positive God is having deliberate fun at my expense.
"I think I'll make Effie really talkative with strangers. Ooooo....I know. I'll make one of her favorite topics her love for Thomas the Tank Engine's best friend.
And then...wait for it....I'll design her tongue to be unable to articulate the "r" sound."
Effie, even if you genuinely adore him and want to recruit more fan club members, "I love Percy" is not going to be an appropriate conversation starter until we get you some speech therapy.‪  #‎whywehaveanotalkingtostrangersrule‬

Teachers shouldn't accept holiday presents until after the winter break. The gifts would be a heckuva lot better.
(Squibs returned to the bliss that is typical school routine.  Thank you, merciful Lord.)

Someone is no longer allowed out of her kennel during squib bath time. 
(The bowels of hell opened up and spat out this dog.  Which is exactly why the squibs love her brains out.)
And, speaking of Mabel...

That awkward moment when Jace's progress report comes home. And you realize his goal to "appropriately respond to the commands sit down, stand, point and give me" are the same goals you have for Mabel.
And she's showing a helluva lot more progress in meeting them.
#yourekillingmebiggs, #mabelcantdotheactionstoitsybitsyspiderthough

I love the Biggs to the point of physical pain.  I can also fully acknowledge the fact that he is an academic lump.  These are not mutually exclusive truths.   And he's up from the "performed with 0% accuracy" score he received last quarter.  Way to reach for the stars, Jace.  His teachers are saints.  Saints, I tell you.

Thanks for continuing to check in on our herd...until you hear from us again...

Wednesday, December 10, 2014

Holiday Blessings

First and foremost...THANK YOU, THANK YOU for sharing about sweet Devine.  I wish I could update you on his status, but one of the best ways of keeping kids in state custody safe is keeping their information confidential.  I won't know anything more than most of you...I only know that his adoption profile is gone and I hope it means amazing things for a redheaded boy whose picture was seen nearly 6,000 times more than it might otherwise have been because of the generosity of each of you.

Thank you so much for showering the squibs with your kindness and extending it on to others as well.

You have certainly been responsible for making our holiday much more merry and bright.

Sending you the sweetest wishes for blessings this holiday season and beyond...

From Pudge, Biggie, Effbomb, YoGebbaGebba and the whole Heigele crew...

Happy Holidays!!!

Wednesday, November 19, 2014

Saying Goodbye to the Blog

It's probably been coming for awhile now.

I haven't been posting very regularly and life with four kids and a golden retriever puppy spat straight from the bowels of hell is keeping me away from my computer.

I think we still get blog visitors.

I assume we do.

But...just to test the waters a bit...I've decided to make one last bid for an incentive to hang around blogland.

So, here's the deal.

His name is Devine.  You can read more about him here.

And this kid is keeping me up nights, people.

He's seven.  Only.  Seven.  And hasn't been seven for even five months yet.

He's available for adoption.  To any state.  Because no one has ever stepped forward to say, "He's mine.  I'll take him.  He stays with me."

Every WORD of his adoption bio is true for BOTH Pudge and Biggs.

But, more importantly, LC and Jace were domestically adopted because, repeatedly during the years before I was married, I had seen...firsthand...what happens to children with Down syndrome who are brought up in foster care in our country.

It would break your heart and turn your stomach.  I guarantee it.

This kid is oozing with potential.  This kid is waiting to explode with wonder in an environment that would support the kind of consistency and emotional investment he deserves.

This kid is drop dead gorgeous, if that figures in at all.

I need a family for Devine.  I need somebody to step out of their comfort zone and say, "Kid.  I'm here to change.  your.  world."

I need a safe bed and a warm lap and a "you are so worth it" for this kid.

If you can't be Devine's hallelujah, could you please pass on his information in the hopes that a family willing to be his "yes" might see it?

December 1st.  If 100 people comment to tell me (and prove it) how you shared about Devine's status via social media, the blog stays.  If not, that's okay.  I get it.  It's probably been in the works for awhile anyhow.

And, of course, if we DO hit the hundred mark, you never know just how we may have to celebrate...

Thank you for sharing Devine's story.

Thanks for praying this kid into an amazing place with me.  You never let me down.