Inclusion or Isolation?

I happened upon a study, Involvement or Isolation? The Social Networks of Children with Autism in Regular Classrooms by Brandt Chamberlain, Connie Kasari and Erin Rotheram-Fuller.  It was originally published online in 2006, and published "hardcopy" in 2007.  It looked at children in grades 3 through 5, and how they viewed their social networks compared with how their classmates viewed them.  Children with ASD were compared to their neurotypical classmates.  Not surprisingly, the students with ASD were more socially isolated than were the neurotypical students, and this difference increased with the age/grade of the children.

The researchers looked at measures of whether the "social isolation," which was admittedly not severe, resulted in feelings of loneliness on the part of the students with ASD.  I think this was the wrong result to investigate.  First, I don't think the researchers necessarily understood what social relationships mean to children with ASD.  They were looking at things completely through the prism of neurotypical thought, so their questions were missing the mark.  They asked the children questions about whether they felt lonely, left out of things at school ...  These are not the major implications of social isolation for many children with ASD.  They might be for some (particularly for girls), but for many, many children with ASD, the more serious implication of social isolation is the resultant status of being "the other."  As "the other," the child becomes "fair game" to his or her classmates.  S/he then becomes the constant target of teasing and bullying.  Being socially challenged, they also have a more difficult time than most children handling the remarks that come their way, and the tendency to respond awkwardly, or in ways that amuse their classmates, "invites" increased teasing and bullying.  Not having a social circle leaves the child without "protectors," or even anyone with whom to commiserate.

The issue of isolation of children with ASD in inclusive education environments is an important one, especially as the move towards more and more inclusion in education gains momentum.  I would like to see more attention paid to this, and in higher grades.  If there is a difference between third and fifth grade, imagine what the results might show if middle and high school isolation were explored!  Most parents of children in those environments find those years much more difficult than the earlier years, when the peer groups are more stable and more "forgiving."  As the students age and the confluence of puberty and departmentalization causes massive social complexity, students with ASD become more socially isolated and have less buffering - there is no longer a group of kids who know and understand them, and who travel from class to class with them.  The students from elementary school are struggling with their own changes and transitions, and are rarely available to ease the way for the children on the spectrum, who are left in a much scarier, less predictable environment than they experienced in elementary school.

Before the education system gets any further committed to "inclusion for everyone," it would behoove us all to look at what this really means.  Inclusion may not be the appropriate educational goal for everyone.  We need to be looking at what will provide an appropriate educational environment for each student - isn't that what individual educational plan means?   

The e-Village

Like many (most?) mothers of kids with special needs, I subscribe to a number of lists/groups online.  Some are very active, some - not so much.  Those that are active tend to get bogged down, from time to time, in silly stuff: interpersonal drama, "politics," Politics, disagreements about advice - best ways to proceed, good resources, etc.  But every so often, someone posts something - a request for something tangible, a need for a piece of equipment, and the response is unbelievable!  These people, who don't know each other, step up!  One might know of a list where such items are advertised for re-sale; one knows of an exchange group; one knows of a lending "library" for equipment; one checked an auction site; one knows of a group that "recycles" used equipment!

It is truly amazing to me, at times, what a "family" we, who don't even know each other, become through the magic of the internet.  The squabbles are as if they never happened, when something real comes up.  We pitch in.  We offer help - suggestions, advice, a listening "ear," a shoulder to cry on.  Sometimes we joke around with each other.  We vent about the lousy meetings, rejoice about the successes of our children, and share strategies for approaching difficult situations.

I started dealing with special needs before there was an internet to bring mothers together.  It was a very different world, then.  We talk now of how isolated we are, and it's true, we are.  But we're isolated only in the real world.  When we get on our computers, we find our peer groups.  Back then, there was no virtual world to retreat to.  The only way to find other parents of kids with special needs was to go out there and ... find them!  Maybe another kid who was in resource room.  Maybe another parent who let it slip that their child was "struggling" in some way that sounded familiar.  If you were really lucky, you lived in a school district with a special needs organization (PTA or something of that nature).  But it was really difficult.  Did I ever even meet another parent of a child with special needs, before my daughter went to a school for kids who learned differently?  I don't think so!  I knew they were out there, but confidentiality prevented schools from putting parents in touch with each other, even if they had wanted to.  

I am so grateful for this ability to talk to other people, through the internet - to find others who have gone through similar things, are going through similar things.  This is such a gift.  Thank you, to all my e-Village-mates!  Without you, this would all be so much harder.

Trampoline Weather

We've had a lot of trampoline weather around here lately - it's been wonderful!  Warm without being hot; sunny; the kind of weather that makes you just want to be outside.  Here, it is not baseball weather, or any other team-sport weather.  Kids with ASD don't "do" team sports very well.  But trampolines?  They're ... perfect!  They bounce!  For a sensory seeker, they provide the input they need. And without driving a sibling/parent/uncle crazy! And there's the added advantage of exercise, which many of our kids are less than wonderful about getting regularly.  Why?  Maybe because they are "clumsy," and therefore tend not to do very well in traditional physical education situations.  Maybe because the sensory input from traditional physical education environments can cause sensory overload (think: the echoes of sound in they gym; the crashing of bodies into each other (inadvertently) during games of basketball/dodgeball/etc.; the buzzing/blinking of florescent lights; the constant changing of situations, placement of people, expectations, flying balls, need for split-second responses and decision-making).  Maybe because there is so much unstructured social interaction that occurs, and there's so little adult oversight that our kids become extremely anxious at the mere mention of "gym."

It was such fun to watch "my" boys on the trampoline - my son and my grandson.  Jumping, playing some kind of game they made up - was it Star Wars? Pokemon?  It really didn't matter.  They were having a blast; they were outside, and they were ... interacting!  I didn't want to mess with what was happening, so I stayed a safe distance away.  I couldn't tell whether they were making eye contact (not a strong suit for either of them),  but they were looking in each other's direction - at least some of the time.  They were laughing together.  It was like ... any other pair of kids?  No.  It wasn't.  It was like them.  They interact differently from other kids.  Sometimes it's really obvious, sometimes it's subtle; it's always there.  But they understand each other in ways that other kids don't.  My son has other friends - not many, but a few.  One, he's had since he was younger than my grandson is now.  His friend is not on the spectrum, and they understand each other well - yet it's different from how my son and grandson understand each other.  There's something so heartwarming about it.  

Have you ever watched two siblings, and the parents can't understand what the younger one wants, or is saying, and the older one "just knows?"  It's a lot like that, except these two aren't siblings and my grandson is old enough to be able to speak for himself.  In fact he does speak for himself most of the time. But when he's upset, or confused, he can have trouble finding the right words to describe what is going on.  His emotional vocabulary is limited.  Neither boy likes speaking when upset; both tend to become mute.  So watching them jumping, laughing, playing, relating - some things just fill a mother's heart with absolute joy!

Getting Started!

It's been a really long couple of months, in the education world.  I feel like I've been eating and breathing IEP's, NOREP's and all that other alphabet soup that special ed is made of.  School districts that talk about wanting to have open, trusting, cooperative relationships with parents set meetings but don't bother to tell parents about them.  They come to agreements at IEP meetings and send NOREP's that "oops!" didn't quite say what was agreed to.  When you say you need to have a meeting to go over the NOREP, since it didn't say what was agreed to, they look at you like you have three heads and claim that the NOREP NEVER says where the child is going to have a program, or that there will be a program beyond the 30 minutes a week ...


Yeah, an open, trusting relationship.  


It's tiring.


I talk to other moms, and they're tired, too.  But they're tired with their first child, with their only child.  I'm tired with my grandchild.  If I count him as a child, he'd be my fourth child.  I can't even count how many IEP meetings I've sat through.  I've never had a screaming match.  The meetings are always polite and professional, even when there are disagreements.  But not notifying the parent of the time and date, just because you're irritated that she's tired enough to bring an advocate?  Really?  What are the schools thinking?  How tired does a parent have to be, when the parent has to take off from work, again, and hire an advocate, to come to a meeting that should never have had to have happened, to get a NOREP that says what it should have said to begin with?


Parents of kids with special needs are tired.  We get less sleep than other parents.  We need to learn more than other parents - about the specific issues our children face, the educational systems we deal with, the legal system, sometimes the medical and/or psychiatric systems, the "special" post-secondary options, etc. We tend to have more responsibility for our children, who are less likely to have peer-relationships that allow for "shared" responsibility (kids with special needs are just not as likely to spend a day off from school rotating among friends houses so parents have reduced needs for alternative child care).  And with all this comes the emotional cost.  Our friends with typical kids don't "get" it.  They mean well.  But they don't get it.  So we find our real peers - other parents with kids with special needs.  We find each other, we gravitate towards each other.  There is a comfort level we can never find with the other folks out there.  We adore our kids.  We love them fiercely.  But we need to be able to talk to other parents who know in the core of their being, what it is we're talking about.  We need to be with people where we aren't anthropological specimens to be studied; or worse, anomalies to be feared.  And so, we sometimes pare down our worlds a bit.