Friday, August 13, 2010

Just Wondering

We parents of children with disabilities spend a great deal of time advocating for our children. And, that advocacy often involves some sort of inclusion for our children with their non-disabled peers. We will say that we long for the vision of all children, regardless of ability level, playing together, learning together, just generally being one big happy group. But what about within the world of disabilities – do we advocate for that same level of inclusion? I’m not so sure…

I’ve noticed over the 13 or so years that I have had children receiving special education services in my school district that even within the disability world we tend to segregate.

Children with milder disabilities, even some with invisible disabilities, do not socialize or learn with children who have severe disabilities. Parents of children with Down Syndrome, for example, usually win the battle to have their children educated in the general education classroom. The children move freely among their non-disabled peers. But my children with significant or severe disabilities are kept in separate classrooms, often in separate areas of the school, using separate lunch tables, and with limited or no access to their non-disabled peers. That seems to be ok with those parents of the Down Syndrome children. But it usually is not ok with the parents of the children with severe disabilities.

And then there are those times and events that include children with emotional or behavioral issues. Parents of children with disabilities that don’t have those issues can often be seen drawing their children closer, away from the ‘wilder’ children. Or, parents of children with Deafness will often only facilitate socialization only with other Deaf children, relying on the whole Deaf Community argument for their rationale.

More and more, I hear about ‘Autism’ classrooms. Are we sure that isolating children with Autism will make their adults lives easier and happier? Are we afraid to have children who are blind, or have ADHD, or who have orthopedic issues interact with the child with Autism? I know that I have heard many, many times that “I don’t want my child around that child with Autism. He will learn even more negative behaviors.”

Umm….So is inclusion only good when it suits us – when we think our children with disabilities will learn positive things from others? Are we being a tad hypocritical?

What do you think?


Stephanie said...

First, I have to say as a Mom of a child with Down syndrome - I take exception to the geralization, HOWEVER, I know exactly what you are talking about.

I think we forget that each child's placement in school is not only representative(or should be) of that child' particular abilities, comfort level, etc, but also a reflection of what a parent is willing to accept for their child.

In the case of children with Down syndrome, lots of work has gone in to getting folks to realize that children with Down syndrome are more alike than they are different. That should be the attitude for children with ANY type of disability, but it isn't.

As a parent, you have got to remember that your responsibility isn't to the other children in the classroom. You are only there to advocate for YOUR child. If another parent doesn't want their child around "that autistic child", then they are welcome to have their child placed elsewhere. If a regular classroom is where your child needs to be, then there should be no stopping you from getting there.

I KNOW this is easier said than done in some situations. Parents also have to pick their battle and decide what they REALLY want for their children. School districts need to get out of the "put your kid in a box" thinking. (All kids with DS learn/belong here, all kids with Autism learn/belong over there, etc).

Yep - it sucks for teacher with 40 kids in their classroom to have to deal with a child who takes more time to get their lessons - they should be the greatest advocate for assistants. But it also sucks for the kid with Autism and a genius IQ to be stuck in a room down the hall for 8 hours a day learning how to count change & bake brownies - all because of the label they have.

The unfortunate truth is that most school districts are going to try to do the least amount of work to get their pay & not be "technically" in violation of any laws. There are always going to be parents who are so happy to get their kid out of the house, or who just don't care, that allow the school districts to do what ever they want.

Then there are parents like us....;P The ones who don't back down, who hold the district's feet to the fire, who challenge them to step outside of their comfort zones. We can't fix this for ALL children, but we can pave the way for others...

Hope this helps...


Ashley's Mom said...

Stephanie, I did not mean my comments to be generalizations at all. I was just citing one example. Probably writing really late at night doesn't always help me avoid the pitfalls :)

I personally haven't had too many issues like the ones I described. But I have heard stories from my friends that have.

Perhaps because my children do have significant disabilities, it is easier for me to accept and include children of all abilities. Maybe going 'up the disability ladder' is easier than going down.

The introspection of this post was more a warning to myself to always practice what I preach :)

Kitty Dobson said...

I know what you're talking about, I have been working with special needs children since I was 11, and it is one of the greatest joys of my life! One of the things that bothers me the most, is one of my own failings as well as the failing of the school systems in Canada as I'm sure if happens the same in the US.

I have trouble working with Autistic children. I don't care about their disability, it's there ABILITY I care about. I KNOW they are in there, you say something or talk kindly to them at take time they look at your of the corner of their eye and say "hehe I'm in here, see that sparkle? I hear you!" After that moment I put all my energy into them, I loose sleep, and try everything and it bothers me so much that the teachers say, I need you to help here or there.

This brings me to the school system failing them. In a special needs class room, you have all sorts, downsyndrome children both those who are in the room full time and those who come for special classes like life skills, you have deaf/blind children who also have some level of mental retardation (is that still the pc phrase there? please know I use it only in it's proper term. My favourite response when people use that word is to teach them the history of the word, back in the day if you were late, say at a function you would say and this is in the 1800s or so, sorry I'm retarded, meaning late. From that came tardy. and most people stop, and think about}. The children who are deaf but with full mental faculties or only slight impairments are in classes in schools that have deaf and hh programs or with an aide in the class room.

In the special needs class room with an autistic child, that child is with their aide and put in the back of the class room with something that keeps them quiet while the other children, who they decide can learn to make change and buy groceries and simple simple things, rather than trying to teach them to their full abilities that they could achieve. Should this Autistic child have the nerve to make noise, to maybe run around to get into things he's not supposed to, instead of saying kind words, maybe bringing him into the circle for a little bit for some interaction, he is should at and pushed back to the outskirts.

The first sever autistic boy I worked with was called Daniel, one of his quirks was he like to sniff hair, most people would push him away and scold him. I took my cue from one of the other children in the class room, she was deaf/blind and when he came over to her, she would sit there, and let him do it then, he could come to her and put his head under her face and she would put her hands on his head. There were other people who let him smell their hair once in a while but to no one else did he return the favour. When I first started working in that class room I was using a great banana shampoo, and Daniel came over, the first time i was like what is he doing?? And later I saw it was just what he did. So I allowed him to just smell my hair, it wasn't a big deal (unless he had a cold!) and I was incredibly honoured when one day after smelling my hair, he returned the favour. I knew then that this child was a caring, friendly boy under his communication problems.

Daniel taught me many things, I offered to work with him more, taking his aide's breaks. I brought him crayons and paints and we did art, and he had a talent no one would have guessed and so he communicated and showed us all that he saw more than most people thought.

Daniel touched my life, and will forever be in my heart and help me to think twice when I see a child who is not getting the same treatment nor being helped to reach his or her potential.


Janet said...

As a mom of a son w/ autism, I'm really going to have to thinkg about this. When Luke first started elementary school I wanted him included as much as possible. Now that he is in 2nd grade and I have had the time to observe him (and other kids w/ autism) - I am changing how I think.

Right now I am working on getting him out of music - the kid is non-verbal. I don't care that he likes to listen to music, 2nd graders really don't do music that well. He would be served better by being in art or PE (but still w/ typicals).

He learns best away from the big class -- partly because of commotion, partly because of his lack of communication skills.

Last week he had a substitute sped teacher, her words were that "he laughed at her" when doing body parts. What 2nd grader wants to do body parts!?

Communication is the biggest issue w/ autism (from my current perspective). I know some boys who started middle school this year - there communications skills are greatly improved, but still have a long way to go. Also, academically they aren't w/ their peers, though they have the ability. A seporate enviroment w/ an autism specialist (who will really push them!) might be the best for them.

Stephanie said...

LOL! Ditto for me - our schedules are flip-flopped, so this was my night-time as well.

I do understand what you were getting at, and it is not just an issue with children with DS.

I think a lot of it depends on the school district and how they value their special needs students. Unfortunately, ours does not at all. :(

Honestly, ours is not just special ed students, it is anybody who takes a little extra time: i.e.minorities, low-income, behavioural issues, etc. We live in a big, small town (hope that makes sense). Everybody here knows everybody else or went to school with their parents, etc. Unfortunately, our kids also have to overcome sometimes generations long prejudices/disputes.

I finally pulled Christopher out to homeschool and have never looked back! :)



P.S. You are welcome to use that you-tube piece on here. :) I think the code pops up at the end of the clip. :)

MMC said...

After reading Janet's comment, my first thought is that inclusion is a heck of a lot easier in the younger grades. But when you get to middle (and especially high) school, it's been my experience that it can be a whole lot tougher to make it work, no matter what the particular disability.

I must say that I admire my oldest daughter's ability to move in both worlds, so to speak - although mildly to moderately mentally challenged and on the autistic spectrum, the Blue Jay seems amazingly comfortable both in the world of typical children and adults (although she definitely gravitates to younger kids) and the world of various disabilities. Not that the "typical" world is always so comfortable with her. But that's a story for another day.

She has been exposed to a lot of children and youth with various levels and types of disability (through both Special Olympics and our local Creative Arts program) and I often find that although I at times struggle with feelings of discomfort or not quite knowing what to say/do around some people who are more severely challenged than my own children, the Blue Jay appears to have no such issues. She is truly blessed in that regard, I think.

Deborah, I am curious as to whether Ashley (or your other kids) have experienced much in the way of being bullied or otherwise victimized by their peers at school. It's never really been much of an issue for us until the Blue Jay started high school this last year, But now I am starting to see some stuff that really concerns me.

Sue said...

Hi Everyone,

I know it is hard at the coal face but everything that you are doing by advocating hard for your kids, is helping people like me to change the system from the other side. There are more of us in there fighting along side you every year.

Sometimes it's a change 'one attitude a day' job but we will get there together.

Azaera said...

I honestly don't believe in the school system one of the reasons being exactly what you've said. Segregation, bullying (not just by peers but aides, and teachers and other staff), there are a myriad of reasons why I won't be sending my children to public school.

Skyler will end up taking classes (like music and whatever else he's interested in) and will have a chance to socialize there, but it will be classes chosen and paid for by us his parents and if we see that he is not being treated fairly or being segregated then he will be pulled from the class if they don't fix it and I will complain about their poor ethics until they right their wrongs or lose business because of it.

Terena said...

you're so right! I see it often. Even teacher training programs are segregated into "sever" and "mild to moderate." I know our kids have very specialized needs, but I would like to see teachers supported more to find ways for more inclusion of kids with disabilities in the larger, "typical" classrooms, and within the special needs classrooms.