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?