Monday, October 29, 2012

True Inclusion


You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will blow
And when it's time, you'll know

You've just got to ignite the light and let it shine
Just own the night like the 4th of July

'Cause baby you're a firework
Come on show 'em what you're worth
Make them go oh, oh, oh
As you shoot across the sky

Baby you're a firework
Come on let your colors burst
Make 'em go oh, oh, oh
You're going to leave them falling down

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
Now it's time to let it through

~ Katy Perry, Firework

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We hear people speak of inclusion often, that children have a right to be educated with typically-developing peers to the greatest extent possible.  Now, my son has never done well with inclusion - self-contained classrooms seem to serve him better - but the right is there and often spoken about in advocacy circles.  

However, inclusion seems to always refer to school settings.  We don't speak as often of inclusion in our everyday settings - with family and friends.

This is where I feel that we fall short.  Inclusion is so much more than a spot in a classroom.  It's about more than rights and laws.  It's about acceptance.  This is where inclusion outside of the classroom becomes an issue.

Think about it.  How many autism parents speak of family members who do not understand?  How many special needs parents feel pressured into putting their children in situations in which their chances for success are low?  How many times do we as parents get pushed to bring our children to places and events in which they'll be bombarded with sensory input, in which they will need to remain still and quiet for an extended period of time, and in which they'll be surrounded by people who do not understand?

And how many of us do it?  I'm as guilty as the next person.  I feel the need to bring my child into a situation that I know - I know - will be unsuccessful for him.  Yet I do it anyway.  I do it because someone else wants me to do it and I don't want to disappoint them.  I do it because someone else doesn't understand just how much these situations bother my boy.  Then, if it's a situation that I can convince someone that he will not be able to handle, I allow other people to encourage me to leave him behind - to leave a piece of my heart, my family, behind.

Why do we do this?  We push our children into situations that make them uncomfortable.  We make them conform to a world that seems to run counter to the way that they are wired.  We do it in the name of making them more like us, more able to "adapt" to the world.

There is something to be said to giving our kids the skills to cope with challenges in their world.  It's also true that no person can truly live in isolation successfully; even the most reclusive person must manage going to the grocery store, the doctor, and other essentials for their survival.  However, in light of all of the work that our children do daily in therapies, school, and just in their everyday lives, is it not the case that we should meet them in the middle?

Unfortunately, there are many people in our lives who won't get it.  They'll say that we need to make our kids do these things, as though a trial by fire will suddenly correct neurological differences.  They will feel slighted when we choose our children over them, but should that not be the case?  Should we not serve as our children's advocates, helping to communicate to the world their needs?

In a way, I've decided that I simply won't allow myself to be swayed by those naysayers.  The people who don't get it will continue to do so until they have an epiphany, but I won't be the one to grant them that.  They have to come to their own realizations.  I can be kind, I can explain until my tongue is tired, but I cannot force someone to listen.  As such, the person I need to be most concerned about, the person who deserves my worry, focus, and attention, is my boy.

Ultimately, anyone who doesn't make accommodations, anyone who doesn't try to reach out to him, anyone who does not truly try to include him in the way that he can best be involved is simply missing out.  They are missing out on my firework - on my brilliant, shining star - who is more amazing than any of them realize.  Inclusion doesn't just mean giving my boy a place; it also means gaining so much more for his presence.  The world and everything in it is better for him being here - autism and sensory issues and everything else added in.

So I make the following resolution to my boy - there is no one more important in my life than you.  Even your father isn't "more" important; I place you both on equal footing.  You are a part of who I am.  You know me better than anyone else on Earth.  So here is my promise, my angel - we will practice true inclusion in our family.  Unless it is truly an "adult" only occasion - like a parents' night out - we will come and go as a family.  If it's a situation in which accommodations won't be made, we will sit it out as a family.  If I cannot make someone understand - and I do try, my love - I will not leave you behind. I will stay with you, because you are an important part of who I am.  The most important part of who I am.  We will always see the brilliance in you and will always be at your side assisting, guiding, and following your lead.  We no longer operate as separate pieces; we come as a package deal.  All of us.  It's you, me, and your father against the world.

And it will be.

4 comments:

  1. This is beautiful - and you are so right.

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  2. This is so right! We need people to understand where our kids are coming from and be willing to meet them at their level. As parents, we have to decide how and where to stretch our kids, not anyone else.

    Coming by way of Love that Max!

    http://marfmom.com

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  3. Found you via Love that Max...

    I tend to have a more difficult time when the inclusion highlights my Boo's difficulties. I am fine in our own little bubble. But when we are at an event with children her actual age it hit home. That as much as people want to include her, sometimes it seems that it is better to exclude her. In school, yes she should be included. But class birthday parties? Sad to admit, but sometimes I would rather she not be invited.

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  4. Hopping over from "love that Max" link to say hi this weekend. If there is one thing that Autism has taught me is how to stand up and say No! for my child. It has been a tough and bumpy road but after 13 years I am much better at standing my ground. The bonus is that it has also taught my DD to stand up and say No! for herself. Great post. ~ Jamie

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