Earlier this month my friend Tim Villegas, another educator who is dedicated to furthering systems of inclusion, put a post on FB where he asked the question “Why do you support inclusive education?
 
He received many, many terrific answers and I was thrilled that mine was deemed worthy of being one in that amazing list.  Here is what I said:
 
So many reasons but let’s go with-we never know what someone is capable of until they have an opportunity to show it.

Oh, wait- how about because you can’t get to the same place in The same way by taking a different path.

Or because we know that if we took the same person and filled their lives with enriching experiences they would be changed far beyond a life where they had none.

How many responses do I get?

And I left it at that.  But I realized later, that though each of those answers was true- none of them captured the piece that keeps me going- the piece that reminds me, daily- that what is sometimes so incredibly hard, is not really a choice for me at all.  Because we believe, as a family, that it is up to us to leave the world better than we found it. 

To understand how this allows me to do that you would have to know that upon our post- natal diagnosis of Down syndrome for Sevi, I was lost.  So incredibly lost.  I looked down at this newborn baby, who my whole heart loved, and I could not see the any future of possibility, for him or for our family.  I certainly was not in a head- space to be able to look beyond the tiny corner of the world where we existed.

And then time passed, and as it did I learned, and as I learned, I watched.  I watched this baby who so many would judge by his face, and began to see those who didn’t.  I saw those that looked a few moments longer than one would expect, and I didn’t see judgment, as often as I expected. 

Instead, I began to see curiosity and I saw connection.  And as he grew, and I learned and saw more, I came to realize, through a few chance interactions, that I will never know the reach of my son’s impact on the world. 

Because I will never know of all those people who know him today, who may find themselves as a future parent, or a future sibling, or a future aunt, or uncle, or grandparent of a person with Down syndrome.  I will never know which one of those who knows Sevi today, will be a future friend, or neighbor, or in a position to employ a person with Ds, whose perspective will be forever changed, for good, because they knew, truly knew Sevi, and realized that having Down syndrome does not define him. 
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To use his words- they will know that having Down syndrome is no big deal- once you understand it.  Knowing him may change their perspective, and thus change not only their story, but the story for another future baby with Down syndrome, and that, is a future that I can get behind, each and every day.

​People with Down syndrome often (and by often, I mean almost always) experience challenges with their fine motor development at some time in their life.  For some this is more fleeting, and for others it is more of a long-term deal.  Sevi has the long- term kind, and it affects everything he does, especially Sevi holding and effectively using something to write, draw, color, paint, pretty much anything that makes a mark on a page. 
 
Because of this, Sevi has pretty much always avoided drawing because it is hard and his drawings don’t generally come out the way he wants them to.  This is something he is acutely aware of, and something he wishes was different.  12-years of not being able to do something the way you want can have lasting effects on your belief that things could ever change. 
 
But change it can, because, for some reason, and we may never know why, after a few sessions with his current Occupational Therapist, Sevi has begun to draw. 
 
Mostly he is copying images his brothers draw but he also copied an elk from a coaster in the house, and then the cover of a Harry Potter Book, and was so proud of his end products.  
 
He has colored in the past but drawing has never been an activity of choice to fill free time.  Yet, after 12- years, he is building confidence, and the practice can only help him build skill.  
 
His drawings are still far from what he wants them to look like, though he doesn’t seem deterred, and they may not look like much to someone else, but for me they are a prime example that it is never “game over” where learning is concerned.  
 
Watching him, get enjoyment from something that has previously caused so much struggle, shows that the window can always open, no matter for how long it had been closed- sometimes it is just going to take a little bit of elbow grease and even more belief that it will.