Kids Say the Darnedest Things

We're spending the weekend in the mountains with my daughter's family - my daughter, son-in-law, and grandson.  This morning, my grandson says to me, "How did you sleep?"  Isn't that sweet?  Any typical parent or grandparent would think that, if their child asked a question like that.


We spectrum parents, however, are a bit ... warped.  After my sweet conversation with my sweet grandson, I turned to my husband and said, "I wonder who taught him that?"

Isolation Amidst Community

As parents of children on the spectrum, we tend to find ourselves isolated - our children don't "fit in," so we don't fit in.  Our concerns and worries rarely mesh with those of other parents of our children's age-mates.  


When our children are very young, we worry about toilet training - way past the ages of the other children.  We worry about our children's ability to carry on conversations - not necessarily to speak, but to have a two-way, reciprocal conversation.  We worry about whether they will ever learn to tie shoes, button buttons, zip zippers.


When our children get older, we worry about whether they will be able to write, sign their names, read their own handwriting.  We worry about whether they will be able to handle the departmentalization of middle school (and we are terrified about the social aspects of those years, which are difficult for so many students, even under the best of circumstances).


During their high school years, we worry about "where they are going;" whether they will be able to go to college, whether they will be able to be independent - in college or in a job; how they will survive.  We worry about whether they will be able to make friends outside the structure of a school environment.  Will they find life partners, if that is what they want?  Will they have friends, family, community?


How ironic, that we worry about our children's future isolation as we become isolated in caring for them.  If our children are "low functioning," we think we have nothing in common with parents of "high functioning" children.  Similarly, if our children are "high functioning," we feel like they are SO different from "low functioning" children.


The labels are killing us.


The reality is that all kids who have special needs have more in common than it might at first appear.  All their parents have to explain their needs to their schools; all their parents have to fight with school personnel to get the proper accommodations/modifications for their children to get the education to which they are entitled.  All of them feel "outside."  All of them are the "other."  All of them are isolated.


I hear many parents of children with ASD talking about how isolated they feel.  I know they feel that way.  I certainly have felt that way, and still do - often.  But if we want to be kind to ourselves and each other, we need to stop artificially narrowing our "pool."  As long as we think of our "peer group" as only those other parents who have children with the same approximate diagnosis and the same approximate functioning level, from the same geographical area, and the same general age range, we will be horribly, devastatingly isolated.  But we don't need to be.


There are lots of other people out there who are equally isolated, equally in need of support, equally in need of community, and equally facing schools/peers/families who view their children as somehow just not trying hard enough, or just [fill in the blank].  Whether it is a mental health issue, or a learning difference, or something else - many, many parents have faced the glares, comments, snickers ... the judgments that said that what was "wrong" with their child was the result of "bad parenting" and certainty that if they were the parents, then none of those nasty behaviors would be happening.  


One of the best things that I have ever seen is a well-functioning special needs parent group.  When the special needs parent group is functioning (like a PTA for special needs parents), it lets everyone get together, and the level of functioning, the labels, the ages - they don't matter!  And because there are people with kids with all different kinds of issues, they learn from each other, and there is so much more to learn when there is so much broader a range of issues to work with.  People whose kids are primarily dealing with "x" suddenly realize that there might be some "y" going on, and they might never have realized it if they had been hanging around only with people with "x."  


Another very unexpected benefit of these groups is that, for some families, when they have additional kids, if a later child has something "different" going on, the parents have already learned about many different kinds of issues that happen with kids, and they are both more likely to recognize issues, and are less likely to be fearful about the potential issues they could be dealing with.  

Family Time

We spent a long weekend away, with the extended family.  It was nice to spend time with the family; it was funny to watch the ASD kids interacting with the typical kids ... or actually, for the most part, not interacting.  One cannot help but make some comparisons, but this time, it was not heart-wrenching.  Everyone was having a good time, there were no tantrums, and when someone needed quiet time, it was easy enough to withdraw to a more isolated space.


The six-year-old (NT) was spinning stories about having play-dates with alligators, in his house - laughing as he spoke.  It was infectious and funny ... and the ASD kids, while imaginative, would never have had that kind of imagination.  Conversation about how teachers are sometimes wonderful and sometimes seem not to know the child at all, thankfully cross all categories of kids.  The great teachers are golden; the bad ones, well ...


It's fun to watch the cousins, the older teenagers/young adults, starting to get to know each other as "real people."  Cousins who used to be "so far apart" in age are now becoming fairly contemporary.  They're finding their way, and making connections - some expected, some not.  Of course, the 16 year old Aspie, being the youngest of his generation (on both sides), has a bit of a harder time.  Having no real age peers, and little interest, he doesn't socialize much.  He spent a lot of time playing on a DS (hand-held video game), with the 8 year old (next generation down) who has PDD.  They are, in many ways, soul-mates.  They understand each other in ways that the other children do not understand them.  That, too, is fun to watch.  Sometimes I think that families with only one ASD child are really missing out, much the way that families with only one child are.  Children speak a "language" that adults have forgotten; ASD children speak a slightly different language, and they understand each other far better than they understand NT children, or than NT children generally understand them.


The older generation, the grandparents/great-grandparents, seemed not to notice the incredibly strange behavior that was sometimes in evidence.  That was all for the good - it meant that there was no need for explanations or apologies.  The next generation, my generation, was able to laugh at how oblivious they were - they, the schools (when it suited them), and anyone who liked to pretend that this was all in our heads ... and just then I was "sniffed" by way of greeting!  


Sometimes, even though family time can be stressful, it has its moments!

Inclusion ... the Never-ending Discussion, but Where is the Real Conversation?

I attended a "training session" discussing the potential for allowing for increased inclusion in classrooms, in this case, providing ABA (applied behavioral analysis) services to autistic students in inclusion classrooms.  There was an interesting mix of people - lawyers, parents, advocates.  I'm not a strong advocate of inclusion - I certainly think it's a great goal for many children, but I don't think it's right for everyone.  I think it's a mistake to think that there's anything that's right for everyone, and the concept that the goal in education should be that everyone, no matter what, should be in the same setting ... it's wrong.

I was very put off by the attitude of the presenter.  She kept asking questions as if she was asking questions, but she thought they were "to make people think about their prejudices."  It never occurred to her that she was operating from her own set of prejudices.  She asked whether there was any service that could not be provided within the mainstream class.  I raised my hand and gave an example:  the autism support that is provided in a local elementary school includes a curriculum that addresses social thinking.  It is a curriculum that is provided to only the kids who need it, i.e. the ASD kids.  "Well, couldn't all the kids get it?"  "Sure, but they'd need 20 of the person who provides it, instead of one.  That's an expense that's not reasonable."  "Well, couldn't they train the classroom teacher to do it?"  "No."  She didn't like my answer.  This presenter's way of dealing with everything was to minimize the skill of the provider of the service, to minimize the challenges of the students involved, and to behave as if anyone could do it.  "It isn't rocket science," she said several times, about ABA.  She's right, it isn't rocket science.  But that doesn't mean that everyone is well-suited to doing it.  It also doesn't mean that everyone has the knack for doing it.  I didn't even have time to get into the fact that the way that ASD children learn these things is SO different from how NT kids learn it, that to teach it together would defy the very reason for having the curriculum for the ASD kids in the first place!

There was discussion about the "odd" phenomenon of concentrating children with certain disabilities in particular schools within a district.  I don't understand why this is odd.  People act like all kids with special needs can be taught with the same techniques.  This is not true.  Why would we NOT want teachers who are particularly skilled and experienced with certain populations to teach them?  Why would we want what this presenter kept referring to as "natural proportions?"  We don't look for doctors who have "natural proportions" of patients with rare disorders!  If someone has a rare disorder, they look for a specialist in that field.  When someone has a complex legal matter, one does not go to a general practitioner; nor does one go to a trusts and estates attorney if one has a torts case - even though the T&E attorney can learn the rules of evidence!  If someone has a rare learning disorder, why should they not have a teacher who is specialized in that specific area?

When I spoke to the presenter during the break, and told her of my experience with children who had been placed in private schools, and whose experience was that it was only in those private schools that they felt like they were actually included, she said she'd heard that from kids before ... yet, she was dismissive of the perspective.  How can we not pay attention to the kids who we are supposedly advocating for, if we say we are advocating on their behalf, for their benefit, and they are telling us that they feel excluded in the general education environment, and they do not feel stigmatized or otherwise "excluded" by being in a specialized school?  If they tell us that being with other students "like themselves," they find, for the first time, a sense of community, how can we not honor that?

One thing that occurred to me, after the training, and after my conversation with the presenter, was that the people who are coming up with some of these concepts must not be members of a minority group, of any kind.  How could anyone else come up with the idea of "natural proportions."  People from minority groups tend to congregate in particular areas so that they can form communities of "their own" within the larger community.  That's why there are "Little Italies" and "Chinatowns" and neighborhoods with various other ethnic identities.  If a particular ethnicity constitutes 1% of the national population, it is the rare member of that ethnic group who chooses to live in an area where they are that proportion of the population.  There is comfort in community.  If people look at any of the online communities, it is clear that this is true for many people with disabilities as well.  For many people with autism, finding out that "autism" is what explains so much of what has been puzzling about them (or their world) is a huge relief, and finding others who share this label is wonderful.

Maintaining "natural proportions" in the face of this, to me, makes no sense.  Why should a child with Asperger's be expected to never meet another child of about his age in school, who shares a similar diagnosis, because with a 1 in 100 ASD diagnosis level, and the functioning levels being widely varied, the chances of having a true peer is minimal.  That is not fair to the children, the teachers, or the support staff.  

So much needs to be weighed, but it seems like those who advocate for inclusion are not listening to any of the reasons why sometimes, sometimes, there are valid considerations for thinking beyond pure, total inclusion as the "gold standard."

Parenthood, Giftedness, and Isolation

Like pretty much everyone, I've been watching the tv show, Parenthood.  There was a lot of buzz when the show first started, about Max, the boy with Asperger's.  Was he portraying the child realistically (yes)? Were his parents doing a good job of showing what it's like to parent a child like Max (also, generally yes)?

Some more interesting issues have come up, and been less discussed.  The extended family's ways of dealing with Max, and their ability to recognize the realities of his needs, have been interesting.  In particular, the grandfather's perspective, which tends to be a combination of denial and self-centered irritation at the very idea that he might have to inconvenience himself for the sake of his grandchild, is all too familiar to parents of children with autism spectrum disorders.

Another interesting issue was the appearance of the therapist who was, almost miraculously, able to help Max do things that his parents had not - play games at home, interact with other kids at the playground ...  The mother feels inadequate and talks about how easy the therapist makes it all look.  The therapist basically chalks it up to not having to be with him all day.  I found it irritating.  Therapists work long and hard to get the results that they showed in basically no time at all.  It doesn't happen immediately!  Learning social skills, learning to apply them, and being motivated to try, is time-consuming work.  Children learn these things by taking baby steps, not by going to the park one day and having a perfect total experience.  I really wish that, when they show that therapy can help, they were more realistic about the work behind it.  The way this was shown, it looks like "if the parents had just" ... been more persistent? been smarter? been firmer with Max? known what to do? ... they could have done it easily.  Having the reassuring therapist comfort the mother doesn't counter that impression.  It just makes it look like therapists will make the inept parents feel better that they didn't do a better job.  Autistic behavior is not caused by bad parenting.  The fact that therapy helps doesn't mean that the parents are bad parents.  Parents, faced with an unusual developmental situation, need guidance from people who understand it.  The usual advice, from well-meaning but clueless family members, is useless.  

But the issue I was particularly intrigued by was the issue that came up when one of the other couples was concerned about their daughter and sought some support from Max's parents.  They had their daughter evaluated (it all happened SO fast!!!), and it turned out that there was "nothing wrong, she's just gifted!"  I was hoping there would be some follow up on this, but so far, there hasn't been.  There was some awkwardness about "breaking the news" to Max's parents and Max's parents talked about how they kind of hoped that their niece did have some issues so they wouldn't feel so isolated, but two more episodes have aired, and there's been no more conversation.  I'm disappointed.

First, this isolation that Max's parents feel, even in the context of this great, close extended family, is an important issue.  Parents of kids with special needs often feel like we are living on the outskirts.  Our brothers/sisters/parents generally don't really know how to deal with our kids.  They keep a bit of a distance.  They say stupid/hurtful things.  Sometimes they realize it; more often they don't.  In our communities, we are similarly isolated.  Our kids are "those" kids.  When we are lucky, we find each other, and then we talk about IEP's, NOREP's, sped directors, ESY, and all those other things that the rest of the parents don't understand.  It's a different language, different everything, from what they other parents talk about.  When you have typical and atypical kids, you have a foot in each world, but the isolation part wins.  If, in a family that is that close-knit, a couple can feel isolated, imagine what it is like in the broader community, where the other members of "your group" don't have the same kinds of bonds as they do in this family?  Isolation, among families with kids with special needs, is very, very real.

The other disappointing thing, for me, about labeling the other child "gifted" and dropping the whole story line is that this seemed like a great opportunity to do some myth-busting.  Too many people thing that "special ed" means children are stupid, and "gifted" means children need no special education intervention.  In fact, that is not true at all.  Studies have shown that gifted kids are more likely, statistically, to have special learning needs (besides the gifted issues) than are "average" kids.  Also, many kids with specific learning disabilities and with autism spectrum disorders are also gifted.  One does not preclude the other.  Some school districts try to force parents to choose between gifted and "special" education for their children.  That is an unreasonable and unfair choice.  When school districts insist on watering down curriculum in response to students' learning differences, they are not providing an appropriate education.  Students need teachers who can teach in ways they learn, not teachers who simply stop teaching because it's too hard.  That's wrong.  It cheats the students out of the education to which they are entitled, and it wrongly tells students that they can't learn things which they are capable of learning, but which they need to learn in ways that are different from the ways that other students learn.

Teachers need to be more flexible in how they teach.  We keep trying to teach our autistic kids to be flexible thinkers.  Well, we need to teach our teachers to be flexible teachers.  If more of our teachers could think more creatively about how they teach, and how their students think, it would benefit ALL their students, not only their special education students.  If that were something that was a routine part of teaching education, perhaps the concept of what is "good regular teaching" would expand, and more teachers would have the skills to teach a wider range of students.  Perhaps fewer students would be considered to be in need of "special education services" because "specially designed instruction" wouldn't be as necessary - many of them would be part of typical instruction.

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?   

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!