Thursday, January 16, 2014

Why It Matters

When Patrick was in kindergarten we needed some sort of incentive that he was willing to work for.
  We needed a pay out.  
Since I didn't want an obese child, the pay out couldn't be candy.  
Who am I kidding, Patrick is not candy focused, he's all about the carb.  
He, for sure, would have worked for a fresh baguette every day but I just couldn't do that.  

So we brainstormed and perseverated and finally landed on the library.  
Patrick and I could go to the library every day after school if he had a happy face day.
Oh, those happy face days!  
That meant that Patrick had listened, worked hard and kept it together.  
It also meant that he came in from recess on his own -- a true trial for Patrick -- 
since he couldn't distinguish when his time was up. 
If he saw anyone on the playground, he thought it was his time to play too.

At first, going to the library was a big deal.  
We celebrated!  
We cheered.
We did the happy dance.
And then we waltzed right in and Patrick spent a delicious amount of time 
over the videos and DVD's,
like a guy named Patrick at a bakery filled with croissants and baguettes and other sourdough options.

He relished the moment.
He perused and paused and savored so many choices.
The library was his spot.

Like all favorite memories, the library still makes him happy but it's no longer something he works for.
His happy face days are the norm now.
The library is just a pit stop on our way to the park...or a place to go to directly if there's research for a school project involved.

And so yesterday I casually suggested that we go to the library while Caroline had basketball practice.
Since he is still known for his slow pace of perusal, I was a bit worried we might be cutting it too close.
But we gave it a try.

Like a salmon finding its place to spawn, without thought, he honed himself straight into the kids' section and started the monumental task of choosing a video.
It only took about 5 minutes and we were done.
He had nothing.

"So, what do you think?" I asked.
"I need the computer." he replied.
so big

He gets on the computer and types in his item: Macbeth.

He finds all sorts of options but zeroes in on a Macbeth video in the adult section...we repeat the call numbers to ourselves over and over as we cross through the library.
We find the Shakespeare section and attempt to locate the video.
My mind: tick tock, tick tock
I suggest that we can put in a request for it and he agrees.
We walk right up and talk to the librarian who happens to be a young guy -- 
note to self: when did that happen??

He says it should be on the shelf...he meanders over to the section with us, finds it for us  
(library newbs) and Patrick is smiling...fired up...for Macbeth???

We don't have time that night to watch the show.

So I wake up to my husband leaving for work and telling me, 
"Yeah, Patrick is fully dressed and watching Macbeth."

I come out a half hour later to check on Patrick and he's engrossed...
full middle English +Shakespearean drama + early morning = confused momma.  
I shake my head and keep my morning pace.

He comes out for breakfast asking questions.
"Who killed Macbeth?"
My mind needs simple gimme questions like, "Where's the toast?"
I do what all motley, sleepy, busy parents do...I tell him to Google it.

He does.
Fascinated he tells me that Macduff kills Macbeth -- 
because Macbeth had killed Macduff's wife and son.
I start to get interested.
I can't help it...
this whole weirdness is also super cool.
It starts to break through my early-morning mind fog: my kid is curious about Shakespeare?!?

I tell him that Macduff got revenge on Macbeth.  I ask him if he knows what that means.
He pauses and lets me continue...Macbeth gets killed because he killed other people...he had it coming.
He understands...and he reveals others that Macbeth has killed, Duncan and one other whose name I can't understand.

But here's what I do understand.
Talking to my 14 year old son about the plot of Macbeth in the early morning time before school was an unanticipated miracle.
My son has Down Syndrome.

The statistic most often given is that women who find out they are carrying a baby with Down Syndrome abort that baby 90% of the time.

I like to think that number is a little high...but if it's 75% or 50% it really doesn't matter.
Women are terminating their wanted pregnancies because of fear.
Because they don't think they will be talking Shakespeare to that child, ever.
Because they can't imagine someone with Down Syndrome being clever or funny or 
with dreams of their own.

Because all they know is mis-information.

My son is no "gifted and talented" child with Down Syndrome, trust me.  
But here's what he has had...access to the curriculum.
He's been fully included alongside his typical peers and exposed to rich literature, big ideas like 
social justice and freedom.  He's been in on class discussions and wrestled with morality.  
He's learned about the arts, history, science and math...just like any other kid at his school.

Once in awhile, his curiosity gets the better of him and he gets sucked in.
It happened when he had to do a big project about New York City in 5th grade.
It happened when he pretended to attend Apple Valley (a school set 150 years ago) in 3rd grade.
It happened with the Terra Cotta Warriors and with 6th grade science camp and music.
And now it's happened again with Shakespeare.

The problem with limited curriculum for people with cognitive disabilities is that we limit the menu.
I don't know if Patrick will become a vegetarian, passionate about mangoes or obsessed with granola.
Who am I to decide??
He gets introduced to new foods all the time...that's part of living.

It's the same in school.
People like Patrick deserve to have the same menu as anybody else.
We can't know what will intrigue or light the fire of anyone's mind -- people like Patrick most of all.
If you would have asked me if Patrick would love Macbeth, I would have guessed no.
I would have guessed wrong.

People like Patrick love learning; they light up with excitement when they figure it out.
Just like anybody else.

People like Patrick deserve more opportunities and more depth and more enrichment in school.
Because we can never guess or know what will touch their hearts and speak to their soul.
Their individual passion and interest is unpredictable and incongruous.
Just like every human on the planet.

So, yes, it matters if people like Patrick get to learn alongside their typical classmates.
Yes, it matters if opportunities are limited.
If the curriculum is watered down and dull.

No mind should be wasted.
Nobody should be denied.

We should all get the chance to hate Shakespeare...or in Patrick's case, love it.
It matters.


  1. Beth, I can hardly explain how much this moved me. As a teacher, a parent, a friend...I so admire you, and Patrick. You make the world a better place.

  2. Jennifer, As a teacher, a parent and friend we can just call it a mutual admiration society. :) Thank you for commenting and letting me know how you feel. I really appreciate it! Thank you especially for recognizing the transformative power of full inclusion for children with disabilities and thank you for helping that to happen at your school. That's the ground zero of acceptance and I am so grateful for teachers (and parents) like you!

  3. Hi Beth , thank you for sharing your thoughts. Cristina is thriving in her new environment and is so enjoying the new menu she has to explore!

  4. Raquel, I've been wondering how Cristina is doing. I'm so so glad that she is thriving and enjoying her "menu". Great news! Thanks for the update. :) ~Beth

  5. Thank you so much for these wonderfil, inspiring words! As a mom new to the world of IEPs, they matter! :)

  6. Tara, Thanks for taking the time to comment -- I really appreciate it. :) The IEP process can be very intimidating...just hold your vision for your child's future in your heart. It will be the guide you need during those long meetings. ~Beth

  7. Beth, thank you so much for this wonderful post. My daughter Kate has Ds. She is 6 years old and attending first grade.
    You give me the inspiration to keep up!

  8. Edith...thanks for taking the time to comment! :) I'm so glad this story touched you! I can hardly wait to see where your Kate takes you! Keep in touch! ~Beth

  9. We recently moved to a new district for better opportunities for my son with Down syndrome. Your words in this post were validation for making the tough decision to move!

    1. Laura, I applaud you for taking the leap and moving to a new district for abetter opportunity for your son. I'm excited for all of you and truly hope his education is exactly what you were hoping for in this new spot. Good for you! :)

  10. Such a wonderful post and so perfectly explains why having the opportunity for inclusion really does matter. Thank you so much for sharing this and for sharing your experience with Patrick!

    1. Leah -- thank you so much for taking the time to comment! I really appreciate it. :) ~Beth

  11. I love this post! Our daughter is just entering preschool next year, and we've been told by many professionals that these are the years that she can easily integrate with her peers. That once she hits gradeschool she will likely need to pulled out, separated, so she isn't lost in the pace of 'typical' curriculum. And that all made sense to me as they were saying it. I don't want my daughter to be lost. And then I read your post. Thank you for broadening my views and sharing Patrick's love of The Scottish Play!

    1. Jenni...thank you for taking the time to comment! :) I really appreciate it...and I love hearing about your daughter. Preschool is such a precious time and YES it is easy to make fully inclusive. It is also not so hard to make junior high fully inclusive. You just have to help teachers get over the giant mental hurdle that even students who are not on grade level in every subject deserve to learn alongside their peers. And as an educator, I can reveal the dirty little secret in education that no one wants to talk about: there are plenty of "typical kids" (read: no formal diagnosis) that are below grade level in several subjects in any given classroom. And, when your child is in that classroom and supported academically guess what happens to those kids? They get supported too. :) Inclusion is a very good thing...and well, segregation was always a bad idea. I don't understand why it's still so often the placement recommended for our kids. Stay in touch! ~Beth

  12. Brilliant post and you are a great mom who always creates a fun and great learning environment and enrichment opportunities for Patrick.

  13. Your post makes me think of a phrase I see often in the community of Autistic advocates "Presume Competence". So important!

  14. I love your analogy to segregation, "We limit the menu". Exactly! How do we know what kids want, need or like? They need the opportunity to explore their options and find out what interests them! Thank you so much for sharing this story :)

  15. I respect anyone who can appreciate classics.

  16. All I can think of is ... 'it's a beautiful world'.

  17. All I can think of is ... 'it's a beautiful world'.

  18. What a fantastic story. Thank you.