Monday, March 18, 2013

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.
In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.
A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  
As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     
I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.
I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   
Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.
This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.
To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    
One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

Image Source
I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.
For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.
A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.
We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?
If you haven’t yet thought about it, maybe now is the time.             

 

6 comments:

Anonymous said...

I am a Canadian high school teacher. I have taught quite a few kids diagnosed on the spectrum, including one student I currently work with who is fully included into classes - most of our special needs students are here, as much as possible. Thank you for sharing your perspective, I find it very helpful in understanding more and having empathy for my students and their families.

onelocomommy said...

B will start Kindergarten next year and the push is to mainstream. The past three years he's been in a self-contained classroom for early childhood preschool through the public schools.

We did observe a K-2 Autism class and we knew that it would not be the right option for B.

Unfortunately, Kindergarten in my county is only half-day so we have to have an option for afterwards (we both work full-time). So, not only do we have challenges in Kindergarten but also wherever we place him afterwards.

Definitely enough to give me anxiety attacks at night. :)

Justa said...

I just came across your blog this morning and I'm so happy I did. The post I found was the one about guilt as a mother.

My story is so different from most (which I'd love to share with you sometime) but I feel I can relate to so many things you talk about and would love to be more involved in my own community.

Btw this post is so true. I struggle with worry over what other people think. The meltdowns, though mostly a thing of the past, were the hardest for me. People don't understand and are uneducated on autism vs misbehavior. And honestly, it hurts. For your child and yourself.
We shouldn't have to build up a thick skin just to be in public. I'm just so thankful for people like you that aren't afraid to speak up and educate and advocate. With the Autism rate steadily on the rise, its what this country needs.

dada24 Xu said...

ray ban sunglasses
north face outlet
air max 90 white
michael kors outlet online
nike air force black
abercrombie outlet
adidas superstar white
nike air max 95
pandora charms outlet
coach outlet online
michael kors outlet
coach factory outlet online
coach outlet online
tiffany outlet
nike air max 90
new balance shoes
discount nike air max
polo ralph lauren outlet
asics running shoes
nike free flyknit 3.0
michael kors bags
fitflops shoes
discount oakley sunglasses
toms outlet
moncler outlet online
true religion jeans
oakley vault sunglasses
ed hardy uk
dolce and gabbana outlet online
lebron james shoes 2016
cheap basketball shoes
designer handbags wholesale
2016812CAIYAN

John said...

christian louboutin pas cher
pandora charms
yeezy boost
coach outlet store
air max 90
marc jacobs outlet
nike store
adidas superstars
air max 90
longchamp sale
20170727yuanyuan

aaa kitty20101122 said...

hermes belt
links of london outlet store
adidas nmd
dior glasses
jordan shoes
curry shoes
adidas tubular
nike huarache
links of london sale
lacoste polo

Related Posts Plugin for WordPress, Blogger...