I Guess We Do "Self-Isolate"

People often "notice" that parents of children with special needs seem to "find" each other.  We "self-isolate."  We don't seem to socialize with the "regular" parents the way the "regular" parents do with each other.  Yeah, we're a weird bunch.  Ugh.

Some people even wonder how it is that we manage to find each other.  It's actually amazingly easy.  We, unfortunately, have way, way too much experience with everyone else, to have any trouble at all, recognizing members of our own tribe.  When we speak of our kids, and we mention something "different," something happens with outsiders.  They often don't know they're doing it, I guess, or they don't know what it looks like, what it feels like, to us.  Sometimes, we are even stupid/open/naive (choose your adjective) enough to let drop the actual diagnosis our child carries.  To us, it is often no big deal - a fact, like the color of his hair, or the fact that she loves to sing.  But the horror on your face, or the way your body turns away, even ever-so-subtly, or the fact that you suddenly have someone you need to talk to or something you need to do, or that you gasp, ever-so-slightly.  You, Are Not. My. People.

When I find one of my own, the response is warm.  Often, it is something like, "oh yeah, mine is ..."  Or, a laugh, a smile, a "don't you love how ..."  It can be a question about schools, teachers, doctors.  A reference to who in someone's life is either similarly affected, or affected with something totally different ... yet still, something.  Even a "s/he's so [fill in the blank: sweet, smart, cute, endearing].  Members of MY tribe are not horrified by their children - we love them, just as, presumably, you love yours.  We don't expect others to have different responses to our children.  Unfortunately, we are used to it.  Well, not exactly used to it.  But it has happened, way too often.  We can't deal with it, though.  So, we self-isolate.  We find our own peer group; we find our tribe.  We find ... each other.  And it's way easier than you would think.  And you would be appalled, if you saw it through our eyes. At least, we would hope so.

The "Bodies" Left in Their Wake

I participate and lurk on lots of listservs and forums, and I am usually very interested in the thoughts shared by adults on the autism spectrum - about how they see the world now, about how they remember seeing the world when they were young, and about how they experienced their educational situations.  Recently, I had the sad opportunity to read what a variety of people shared about their experiences with special education.  It was, unfortunately, all bad.


Typical of the recollections shared, was that the time spent "in special education" was useless.  Often, it was damaging.  It wasted the youngsters' time, made them feel stupid, incompetent, "less than."  So many people chimed in, on this one thread, about how horrible "special education" was.  It was such a sad thread, to me ... a testament to how badly special education services are being provided to children.  If children are being automatically placed in "slow" classes, merely because they have special learning needs, we are doing them such a grave disservice.  So many of those children are bright, capable people!  They need to know that it is because of their inherent strengths that they will be able to overcome the struggles that they also have.  They shouldn't have to choose between the supports they need and their self esteem.  It shouldn't be that children can either be in classes that acknowledge and challenge their intelligence, or receive the supports that their learning or other disorders demand.


In some schools/school districts, it seems there is a definite misunderstanding about what special education is supposed to be.  Special education is neither a class, nor a curriculum.  It is supposed to be individualized for each student.  Just because a student has special education needs, does not necessarily mean that s/he should be in a classroom with all the other students with "special education" needs.  Those needs could be (in fact, probably are) very different from each other.  The needs cannot be properly addressed by putting all the students into one classroom.  Many student (some would argue "most" or "all" students) do best by being in the general education classroom, with some supports in the classroom.  And each of the students need to be in a class that meets the academic needs of that particular student, so if a student is a strong math student, s/he should be in a math class that will prepare him/her to advance appropriately in math, and to be engaged and challenged, rather than bored and frustrated.  If a student needs remediation in one subject, it does not mean that s/he needs remediation in all subjects - in fact, it is rare that someone with special needs (or anyone at all?) has "even" level of skills in all areas.


So now, all these young adults, with these horrible memories of special education, are opting out of "special education" for their children.  Is it the right choice?  Are most school districts still making the same mistakes that those young adults experienced?  I can't say.  For my son, that is not the case, and I know I'm very lucky for this.  My son is in an "approved private school."  I am not a big believer in "inclusion."  For some students, it's great, but for my son, it would not have been, and the approved private school he attends has been wonderful.  He receives a high level of academics (which he needs), and the social supports he needs, and the extensive supports he needs for writing - the one academic skill where he struggles ... unless it is a topic that is self-chosen.  Are there trade-offs?  Of course.  His "pool" of potential friends is very limited, since the school is so small, and the student body includes many who would not be appropriate choices (there is a wide age-range, and a wide functioning level).  But for my son, that is not the primary concern - all he needs is a couple of friends, and he has them.


But back to the rest of the student population.  If there is a whole population of students coming through whose parents won't allow them to receive the services they need, because they, the parents, received such poor services when they were students, what are we doing to our children?  It is so necessary to demand of our schools that they truly provide the free appropriate educate (FAPE) that is mandated by federal law (IDEA).  Refusing services, rather than demanding good services, is not the answer.  The special needs of these children won't go away simply by refusing services.  The children will continue to struggle - they just won't have the supports to which they are entitled.


The better school districts aren't providing "one size fits all" special education.  That's really the bottom line.  The school districts that are need to be stopped.  Until that happens, the damage they are doing is multi-generational.  When someone, or something (like a school district) injures a child, it is never "just" that one child who is injured.  It is that child, that child's family, and that child's children.  The ripple effects go on for longer than anyone can predict.

IEP Season

Even when things are going well with my child's school placement, IEP season is always stressful for me.  From what I hear from other Moms, my impression is that this is a fairly common situation. There is never a sense that the schools or the school districts can really be trusted ... not really.  Every time things go well, it is like it's miraculous!  

I'm really happy that we had, overall, a wonderful IEP meeting.  Of course, there were a few little "moments," but none that really mattered.  Unfortunately, those moments still "stick" in one's mind.  There's the school psychologist who doesn't seem to understand why observing in only one class, and choosing, as that class, a less-preferred subject doing a least-preferred activity when the teacher is out, so the class is being taught by a substitute teacher, might not yield a tremendous amount of useful information.  He, of course, thinks he's gaining insight.  Everyone else at the table, who actually knows the child, knows that they could have predicted everything that occurred without his brilliant "insight," and he was bringing nothing new to the table.  Then there's the galling statement that no speech and language evaluation was necessary for the Reevaluation Report because it wasn't required to determined eligibility.  Seriously?  Did they forget the part that the RR is supposed to drive the IEP?  And that the findings of the RR are supposed to guide not only whether the child receives services, but also the type, frequency and duration of those services?  Sigh.  Of course, I did request (demand) that a speech and language evaluation be done, and it will be done next year, before next year's IEP meeting, along with a psycho-educational evaluation, which was conveniently not done (because ... ??? it wasn't necessary either?  because children don't change enough to warrant a new evaluation three years later?).  

I'm in luck, because the SLP who works primarily with my son is incredible, and she knows him well enough, and does interim assessments when necessary, so she doesn't need to rely on a formal evaluation.  But at the back of my mind is the worry -- what if she leaves?  Then where will he be?  And that, at the bottom, is the real reason for a good solid evaluation, and a good solid IEP, when you have a great situation in a great school; it's for the "what-if" situation.  When things are going well, you don't need it.  Things are humming and life is good.  I feel, almost, like an observer in the education of my son.  It's almost (almost) like having a typical high schooler.  He chooses his classes, to the extent that he can, and then I find out about them.  He chooses his research topics, and either I find out about them or I don't.  Sometimes I have to get more involved, and that's okay.  It is truly wonderful, however, to be working with a school that understands my boy, and to see the great strides he is making.

As I sat in this IEP meeting, I kept thinking about those who are committed to inclusion for everyone, and thought about how wrong that would be for my child: he would never have been able to come this far in an inclusion setting, because he needs the security and the intimacy that the small setting of his current school affords him.  Could he have thrived in an inclusion setting of a small private school that was not for special-needs only students?  Perhaps; maybe even probably (assuming they had the supports he needed).  However, the public schools are not likely to provide that kind of option, and that's okay with me.  The opportunity of being with other students more like himself has also been an excellent one for my son.  I am not saying that all students would necessarily benefit from this, but for students like my son, it is a truly normalizing experience.  But beyond that, he is in a school where the principal is able to form enough of a relationship with him to know that her position as principal is not enough to elicit from my son, any sense of a need to cooperate with her demands.  For him, he needs to have a relationship, a sense of respect for the individual.  Titles mean nothing to him, and he won't do something just because someone "in authority" tells him he "must."  Meanwhile, the adults in his school are teaching him about the realities of the world "out there," and the importance of getting past his rigid sense of how things ought to be, so he is more able to function in the world as it is.  It's working.  And isn't that what education is supposed to be about?  Not political agendas, not advancing various theories of how to teach, but to actually teach what needs to be taught?

How About "Inclusion as Appropriate?" or even as Desired?

I was reading another blog, and the issue of inclusion was being addressed ... again.  Inclusion is one of those topics that keeps getting talked about - over and over and over ...  The concept is so seductive, but the reality is so disappointing.  Most parents who wind up placing their children in appropriate private schools find that they are very happy with those placements -- that their children are happy, they thrive, and that life is better not only for their child, but for the whole family.

I have never fully accepted the hypothesis that inclusion is "best." Certainly, it is for some students - but not for everyone. And I don't buy the assumption that severity of disability necessarily determines the ability to include successfully; some severely disabled students can be successfully included, while some less severely disabled cannot. I think it depends more on the nature of the disability, the manifestation, and how the student feels in the mainstream environment.

For some students, private placement afforded them the first opportunity to feel safe, and to feel like they were in a true peer group. For others, it was the first time they felt like they had teachers who understood how to teach them. Many students feel "normal" for the first time when they are in private placement. When a student's energies can go toward learning, making friends, and experiencing school the way we expect typical students to do, isn't that a benefit that we want for ALL our children? If our children can do that by being in schools that are designed and equipped to provide that experience for them, and to teach them how to advocate for themselves so that they are able to "face the world" when they move on to their next stage in life, isn't that what we ultimately want for them?

If we were discussing anything besides education, there would be no discussion: if you needed a lawyer, you would look for a specialist; if you needed medical attention, you would look for a specialist. Why is it considered "wrong" for parents to want the educators of our children with special needs to be specialists in the particular needs of our children? Why is it wrong for us to want EVERY TEACHER our child deals with to understand our child's educational needs? We don't want just the "autistic specialist" to know what to do; We don't want just the "SED specialist" to know how not to say things that could trigger a crisis in a fragile child.

I am tired of being asked why a certain support can't be provided to a child within a mainstream classroom - the particular support may be able to be provided, but the kind of environment a child needs cannot be magically provided. Inclusion is a wonderful concept - as a concept. It works for many children, with many diagnoses. It does NOT work for everyone, and it should not be expected to. The current push to do so is completely ignoring the individual needs of the "I" in IEP, for the sake of educational theory/philosophy. It is at a horrible cost for those who are being sacrificed on the alter of philosophical rigidity.

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."

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?