Wednesday, March 25, 2015

You've Got Four Weeks.

See this picture, Gebba?

That's your brother Biggs.

He's sixteen months old.

He's walking.

He's exactly four weeks older than you are right now.

Which means you have four weeks to attempt standing unsupported.

And cruising.

And putting one foot in front of the other in a forward motion.

Either you pick those buns up from the carpet or "Biggs walked before I did" will be your family legacy.

Not that there's anything wrong with that.

He is naturally gifted.

But I'm shamelessly employing sibling rivalry.

Because the human barnacle thing is getting old.

Four weeks, Gebba.

The clock starts now.

Saturday, March 21, 2015

It's World Down Syndrome Day!

Thanks to the outrageous generosity of our local Down Syndrome Guild, we were able to celebrate the day in the company of Rachel Coleman from Signing Time!

Well, actually, only the Heigele family members without testicles attended.

Loud crowds aren't Biggie's gig, so the boys hung out at home with Froot Loops and unlimited television and the girls and I attended today's event.

The DSG provided a yummy breakfast followed by super fun carnival games.

They even had an Easter Bunny at the ready for photo ops.
("Back off, Rabbit."  LC's not a fan of giant characters in costume.  We're not working to cure her of her anxiety, since it's keeping "Take the Kids to Disney World" off our parenting to-do list.)

Before we knew it, it was time for the show!

The girls had a blast singing and dancing and signing along to their favorite songs.

The time passed so quickly, we couldn't believe it when the show was over!

Thanks for making this World Down Syndrome Day a great one, DSG!  We are so fortunate to have you in our lives.

Tuesday, March 17, 2015

Thanks, Mabel.

Today is day two of spring break.

Since the odds are high we all won't make it to the end of the week, I thought I'd document our survival thus far.

And, it's Gebba's fifteen-month day.  All grand reasons to pull out the camera.

These are the things maternal rage episodes are made of.

Because...if it wasn't hard enough to just take a still photo of my four children...

...let's throw the LEAST obedient golden retriever God ever created into the mix.

You're killing me, Mabel.

So, happy month-day, Gebba.

Not that you'll celebrate it by walking.

Or, frankly, even standing unsupported in the middle of a room.

No rush, I suppose.

Kindergarten is still years away and since you still come in at under 20 pounds, you're portable.

And, let's face it.  Your refusal to become vertical is probably a testament to your high intelligence.

Nobody would blame you for staying low to the ground.

We'll choose to call it "self-preservation practice" rather than "obvious developmental delay".

Crawl on, little brother.

Special thanks to Biggs for observing St. Patrick's day with his cup selection.

That may be as far as our celebrating goes...if you don't count Mom slamming a beer at lunch.

Until next time...

Saturday, March 7, 2015

Missing the Dance

Yesterday was supposed to be Pudge's first ever school dance.

A sock hop, even.

Can you imagine?  Her favorite people...her favorite place...twirly skirts galore and DANCING?

She'd been looking forward to it for weeks.

Even Effie looked forward to show.

But stomach flu shows up when it wants to.

Whether you have glittered saddle shoes waiting or not.

Last night the sock hop went on without her.

So, today we'll make the best of it.

We'll crank up Meghan Trainor and wiggle to "Dear Future Husband".

We'll find that poodle skirts are pretty good bubble-blowing attire.

(They have a satisfying swish when you're running in the sunshine.)

And we'll be reminded that the best way to gaze upon cute shoes is by kicking them in the air when you're pumping a swing.

Here's to playing the hand you're dealt with a smile on your face.

A lesson once again brought to us by the master of the craft.

Sorry the sock hop missed you, Pudge.

And every day grateful we didn't.

Monday, March 2, 2015

Post #2 (It's a Long One): What Do You Really Want?

For those just checking in, this is the second post in a series of posts I'm writing devoted to the topic of inclusion.

The desire to write the posts was generated by my observation that inclusion is one of the most emotionally-charged topics related to special education.  Often, when emotions enter the equation, communication falters.

These posts aren't a series of specific recommendations for IEP interventions or a blanket list of strategies to facilitate a successful inclusion experience for your child.  Rather, each post is an attempt to initiate conversation on inclusion-related topics before you determine which plans might hold the most benefit for your learner. 

The posts invite you to consider delicate subjects before entering an emotionally charged meeting situation.  Understanding your own viewpoint and knowing which topics threaten to emotionally compromise your own objectivity will allow you to be the most clear-headed, conscious and collaborative version of yourself at team meetings.  

What do you really want for your kid?
Before considering the role of inclusion in your child's upcoming school year, it's important to know what you ultimately want to happen for your child within the next 9 months of instruction.

For some families, those goals are going to be largely academic.  Other families will feel the quality of their child's life is going to be more significantly improved by social development or increased ability in functional skills.

If you are able to objectively determine what you desire for your child and effectively articulate those goals to others, you're already making great strides to avoid one of the most common stumbling blocks of inclusion for students in any learning setting.

When "Where" Trumps "What".
Inclusion is an emotional topic.  And, too often, families and teachers make a decision about where a child should receive instruction long before they consider what that student will be working to achieve.

The fact of the matter is that instruction, in order to be effective, must be delivered through a multitude of methodologies and in a multitude of learning environments.

For all children.

Regardless of diagnoses.

Regardless of chromosome count.

After years of instructing students of all both special and general education settings...I cannot bring to mind a single child who learned best and benefited most when their instruction was generalized as much as possible and delivered in a setting with at least 20 other bodies.

Any teacher...of any type of learner...will tell you the most effective instruction for any child involves individual, small group and whole group learning experiences.  If you demand only one type of learning environment for a child of any developmental ability, you reduce the effectiveness of the instruction delivered.

What do you really want for your child?

Do you want your child to make significant academic progress in the upcoming school year?

Is spending their entire day in a general education room going to support them best in reaching that goal?

Imagine a group of five-year-old children is learning to ride their bikes without training wheels.

You are in charge of supervising the group.   You want each child to be successful in riding his or her bike using only two wheels, including your own five-year-old son, Daniel.

At the end of an hour, three children have a wobbly start but Daniel is still repeatedly falling and getting more discouraged with each slap of his knees to concrete.

What do you really want for Daniel? 

Do you want him to learn to ride a two-wheeled bike?  Or do you want him to learn to ride a two-wheeled bike only alongside other bike riders?

I imagine your instinct is not to encourage the other riders to ride closer to Daniel.  I don't suppose you'd have Daniel sit down beside you and watch the other riders until he was motivated enough to get up and try again.

If I've learned nothing else from canned soup and life insurance policy commercials, it's that a parent's instinct is to grab the back of the bicycle seat and personally guide a shaky rider.  In order for Daniel to learn to ride his bike, you run alongside him and don't allow him to fall until his own skills close the gap and he's riding alone.

And that is when you let go.

That is when Daniel returns to the group and applies his new skills and wreaks havoc on the neighborhood in the fashion he'd originally desired.

What do you really want for your child?  Is full inclusion the best way to achieve it?

Six months ago, I would have told you there are absolutely situations in which full inclusion is not only best, but is the only course to take in order to achieve some learning goals.

And I would have told you that my daughter, LC, was a shining example of one such situation.

A little backstory...

From the time LC began receiving therapy in group settings...before she was 18 months old...her social circle involved a revolving front door to our home.

At least once a week, LC entertained a friend or visited the home of another child.
She craved her time with peers...typically developing or not...and delighted in the time she was able to spend with other children.

Just before LC's final preschool year, a significant number of LC's school friends moved or went to new schools in different districts.  We decided LC would be best prepared for succeeding in public school by attending the preschool provided by our own school district.

By the end of that year, it was time to hold the IEP-writing meeting that would guide the instruction LC received in kindergarten. 

I walked into that meeting, in a new school district, with one statistic at the front of my mind.

The number thirty-six.

Because, from the day LC began attending the district preschool, in a setting for children with IEP's and limited peer models, it had been 36 weeks since LC had been on a playdate.

It had been 36 weeks since LC attended a birthday party.

It had been 36 weeks since LC had verbally mentioned a peer from school.

I had watched, at parks and playgrounds, as LC realized her communication skills were not up to the task of initiating play with other children.

I had watched my social butterfly shrink into herself and stand a safe distance away from groups of children she used to scramble away from me to join.


If ever a child illustrated the regression that could occur when they were denied a fully included learning environment, it was mine.

I knew full inclusion was the only way to right the wrong.

We chose to send LC to a school outside our own neighborhood so she could attend a full day kindergarten a cost of $300 a order to spend an increased amount of time with typically developing peers.

At the meeting to discuss her kindergarten placement, I excused her teachers from the burden of any academic progress for LC.  I literally said I didn't care if she learned her alphabet.  I would be able to sleep at night if the year ended and LC couldn't count to ten.

I knew what I wanted for my kid.

I wanted my daughter to be able to socially behave like her same-aged peers.  I wanted her to initiate communication with friends...whatever form that communication came in...and I wanted her to form meaningful relationships like she had in the past.

I knew what I wanted for my kid and I knew spending as much time as humanly possible with typically-developing peers was the way to achieve that for her.

Only too bad for us.

Because it wasn't.

I knew what I wanted for LC.  But I had greatly misconceived what that learning process might look like.

I had failed to consider how my daughter might react to being thrown into a situation in which it was impossible for her to succeed.

I had dropped my daughter down with a tricycle into a group of children her own age who were perched on ten-speeds. 

I wanted her inability to participate like everyone else to be overshadowed by her joy at being included among them.

But inclusion wasn't good enough for LC.

To my surprise and horror, LC compensated for her lack of social and communication proficiencies by electing herself the classroom assassin.

She didn't want to be the classroom baby.  Ask her to assume the role, and she'd physically assault you.  Because babies don't have a mean left hook.

She didn't want to engage in social exchanges to which she couldn't contribute.  Try to interact with her and she'd physically assault you.  Not only did it end the interaction, it prevented you from annoying her with another attempt.

She didn't want to always be on the receiving end of social exchanges.  She wanted to initiate.  And, since she didn't have the social skills to do it appropriately, if she WANTED to interact with you, she'd get your attention guessed it.

Want to communicate that you're happy to see someone?  Physical assault.

Are you bored?  Overwhelmed?  Need a break?  Physical assault.

Are you feeling ignored?  Left out?  Physical assault.

You get the gist.

Not only was LC not benefiting academically from her placement in a general education setting, she wasn't getting the social benefits I'd intended for her to experience either.

To every one of her teacher's and administrator's credit, the option of pulling LC out of her kindergarten classroom was never mentioned.

Until I mentioned it.

What did I really want for my child?

I wanted LC to be able to socially behave like her same-aged peers.  I wanted her to initiate communication with friends and I wanted her to form meaningful relationships like she had in the past.

And if I didn't give her an opportunity to learn the skills she was lacking in a setting where she would get immediate support and feedback, that was not going to happen.

If her classmates continued to flinch at the very sight of her and protect their most physically sensitive bits whenever she approached, she was never going to form authentic friendships.

If I was going to constantly expose that kindergarten class to LC at her most frustrated and worst, they would never have the opportunity to know her and love her at her best.

I had to honestly reconsider where she learned in order for my passionate need for what she learned to be achieved.

At that time...for the skills she was lacking...full inclusion was not the best way to support her in reaching her goals.

And suddenly, you realize Courtney Heigele is an anti-inclusion parent and educator.


Not at all.

When I insisted on full inclusion, I made my decision without knowing how LC would respond.

My knowledge of what I really wanted for my kid had failed to consider what I really DIDN'T want for my kid.

I didn't want her to be perpetually frustrated.
I didn't want her to be socially overwhelmed.
I didn't want her peers to fear her.
I didn't want her peers to be constantly exposed to LC at her worst.

I do not regret our choice of full inclusion for LC.

But I would have saved LC, her teachers, her peers, and myself a great deal of stress if I would have recommended her placement be influenced by her personal experience rather than determined by her legal entitlement or my expectations for her.

That is the beauty of that document...that lovely little IEP.

I don't have to choose between self-contained or fully-included.

I don't have to commit to one placement...and only one...for the duration of the school year.

An IEP is designed to be consistently supportive and effective, even when circumstances for a student change. 

An IEP isn't a year-long educational sentence.  It's an ever-changing, customizable guide. It maps the direction your child is headed.  It notes the markers they'll pass along the way.  And when circumstances arise that influence the route, threaten progress, or suggest a swifter course, the guide should be modified in response to them.

But an IEP cannot be that specific...or that effective...if you are not equally specific in knowing what you really want for your kid.

Inclusion is not a goal to be achieved.

It is a means to an end.

Be sure you have carefully considered where your child is going before you demand on the type of vehicle in which they travel.

Their success in reaching the destination depends upon it.

Happy Birthday, Dr. Seuss!

Unless your mom's spiraling downward into maternity-induced dementia.

Yes, indeed, I have once again come up short in participating as a Kindergarten parent.

Granted, I didn't fail to the degree I did last month...when I sent LC to school celebrating Pajama Day a day early.

But it certainly wasn't my finest parental hour.

Not much good can come from 8:30 on Sunday evening...that Monday is "Dress Like Your Favorite Dr. Seuss Character" day.

Here's LC in her celebratory finery.

Not sure which character she's supposed to be?

Neither is she.

But today, we not only celebrate the literary wonder that was Dr. Seuss.

We also celebrate the fact that LC is still nearly non-verbal.

And completely unable...when asked to identify her answer,

"I have no clue who I'm dressed to be.  My mother frantically clawed through every book she owned as a second grade teacher last night after I'd fallen asleep and shouted praises to Jesus when she stumbled upon a character who consistently wore jeans and a t-shirt.

This morning she told me my favorite character is the kid from Please Try to Remember the First of Octember.

I rather wish she'd try to remember to look at my freaking school calendar once in awhile, because I've never seen that book in my life."

 To her credit, she insisted on wearing her brother's underwear to school, so she's embracing the role of a striped shirted young boy with gusto.

Happy Seuss Day, Pudge.

Don't get anything on that shirt.  If I can squeeze your brother into it next year, he'll no doubt need it.


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 definition...never asked them to specialize in your kind of kid.

And now...with your inclusion 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.

2.22.15  Update:  I received the following in email format because it was too lengthy for my comment section.  Because I felt it was a perspective that would contribute to the conversation, I'm choosing to publish it below.  Thanks to Cassie for taking time to email her experiences with such honesty and compassion.  

I love this blog. I began following as a mum because it made me feel good. Like the world would be alright. However occasionally there are posts like this which are much deeper and more serious (than photos of Pudge or Biggs sitting on the table eating cereal), and I appreciate the way they make me feel.

I was an Australian high school teacher for several years (before pausing to raise my kids), so perhaps I can offer a little perspective from the 'they' side. Forgive me if I use any of the wrong terminology, it is intended without offence, my sole education is this blog (and an unrelated facebook page focusing on special needs children).

I often had young adults with special needs in my classrooms. Sometimes they were accompanied by an additional teacher, sometimes not. At the beginning of each school term when I received the class rolls for my 6 or 7 classes, I also received sheets details the special needs of certain students that I would be working with. It was difficult. I would have 5 - 10 sheets with a range of requirements (make sure X has wheelchair access, make sure Z can sit near the front because his eye sight is poor, use clear directions when talking to W as she becomes overwhelmed by too much detail).

It was difficult, and sometimes demanding, including those students I had 100-200 new names to learn, classwork to organise, a range of ordinary discipline problems, and all the usual classroom problems (there was always one less computer than what was required).

The needs of any child that deviated from the other 30 becomes a burden, and occasionally it was begrudged, especially when the requirements became very specific and I could see that there was no way for me to implement it in a 70 minute lesson plan and still achieve what I wanted to achieve. Or if the requirements required a level of memorising that I couldn't achieve while trying to do all my other duties. I am embarrased to say it once took me several months to realise I had mistaken two very similiar looking boys, one that reacted extremely badly to direct confrontation. I recall digging through the piles of paperwork on my desk looking for the student's sheet of special needs and having the penny drop. I had got it wrong, no wonder I was having troubles with the young man.

I know it must seem heartbreaking from the perspective of the parent, a parent has one child that they love, one sheet of special needs, one child that they know would thrive under exactly the right conditions. As a highschool teacher I have 200 students, and my job is to attempt to give them all a good education.

The most difficult thing for a high school teacher is discipline. It isn't like the movies. In reality it might take me 5 or 6 attempts to figure out how to work with a student. In high school, with 1-3 lesson per week it could take 4 or 5 weeks of a 20 week semester for me to get it right. That is time that I haven't been able to teach effectively. It is the most frustrating thing walking up to a classroom door knowing that you have run out of things to try, knowing that you have no idea how to teach the 26 other students because 1 or 2 are not controllable, hoping that they are away, organising to have them sent out of the classroom just so you can teach a lesson... (For the record, I am not talking about special needs students being badly behaved, I simply mean that this is one of the major focuses of a high school teacher.) When extra requirements are added to this it is overwhelming.

Do you know what was easiest, was when the coordinator of a special needs unit (or a parent) caught up with me for a chat. I got so much information, and memorable information, I got a personal introduction from someone that the child trusted, I got a chance to meet the child outside of the classroom where she is just one of 30 others.

It was great when the student, particularly the junior high school students, had support people in the class with us, it meant that we became a team of three. I could teach and the support person could address the special needs and remind me of what the needs were. Often having a support person in just half of the lessons was enough to help us both, the student to do the things she needed (sit in a good spot) and me to become aware of what was needed.

I taught at a school with a large special needs unit. I loved being involved with the students, I took pride in working with the students. Some students it was so easy, some excelled in my subject area and I enjoy bantering with them, some students I pushed because I knew they needed pushing (and others that I pushed too far and had to learn to help back again). I wanted to be good, I loved hearing that I had succeeded... But my job was to teach 200 students, and I did not have the liberty to spend great deals of my time on any child. Each student gets about 1minutes of my time per lesson. If they take more then someone else gets less. I spend about 90 minutes per day preparing for classes. This includes marking assignments, doing other admin duties, writing new course material, discussing new ideas with colleagues and eating my lunch). Very little time is available for me to rewrite a lesson for any student whose needs differ from the majority.

I hope I have offered some incite into the "they".