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.

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.  

Press "1" for ...

There is recording that is making the rounds, again, through emails and facebook postings, of what purports to be an actual answering machine message of a school in Australia (this is a new detail).  It prompts the caller through the numbers to punch if the caller wishes to "lie about the reason for the child's absence," "complain about homework," "demand a different teacher for the third time this year," "want us to raise your children," etc.  It's supposed to be hysterically funny, and given the number of times I've received this email, apparently many of my friends think it is.

I used to have a great sense of humor.  Some people think I still do.  I often think I still do.  But I don't find this particular "joke" funny ... at all.  I can understand when friends who don't have children think it's funny.  I sort-of understand it when friends with "perfect" children think it's funny.  I do not, will not, can NEVER understand how a mother who has fought, as I have fought, as so many of us have fought, desperately, frantically, for our children; with school personnel who either didn't care or didn't understand or didn't care to understand - how do these parents find this joke funny?  How do they think it's funny when we keep our children home because we cannot force our quivering, crying, anxious children to go to school on a day when they are SO stressed that they can't get out of bed?  How can they think it's funny, when we have spent hours trying to work with our children on homework that our children don't understand, can't complete, and haven't been properly prepared to handle?  What is really funny about having teachers who are so awful that it is preferable to disrupt a child's school year, pull the child away from friends and a routine that is SO important, and start all over again?  And where is the prompt for reporting a school that refuses to follow the law, follow an IEP, and provide a free appropriate education for a child?

What about providing a school environment where students feel safe, nurtured, cared for?  What about a school where the students don't feel like they can't handle being in school, and parents don't have to keep them out in order to preserve their mental health?  How about homework assignments that are reasonable - that are within the abilities of the students, and that are challenging without being overwhelming and disabling?  Wouldn't it be something, if the schools thought it was a good thing for teachers to be mentors and guides for students, instead of jailers and disciplinarians?  And imagine this ... what if the schools worked with families, instead of always assuming that families - from parents to kids - were the enemy.  Really, if everyone is the enemy, what exactly, do the teachers think their jobs are?

And then, they tell us, the parents, that we are supposed to trust them, and that we're a "team."  Right.

Happily, my son is not in a public school.  His homeroom teacher is a fierce advocate for "her" children.  I am SO grateful for her.  

Residential Facilities ... Fatalities

There have been a number of disturbing, sad stories recently about residents in a local facility which is supposed to provide for individuals with serious needs - autism, cognitive impairment, etc.  Many of the residents are school-age, meaning age 21 or under; some are, I believe, older.  Some are verbal, some are not.  

The recent round of stories started with a 20 year old youngster who was left in a van on a very hot day, and died there after no one noticed his absence four five hours!  In the aftermath of this horrific incident, the story of a youngster who had run from his unit, scaled a fence, and jumped (dropped?) over an overpass onto a roadway and been hit and killed by passing traffic, has been told and re-told.  There were questions about whether the alarm on the door had been functioning correctly.  Meanwhile, a staff person was arrested in a cocaine sale in the facility parking lot.  Another incident has now been reported, wherein a resident was allegedly abused by a staff person, was hospitalized for treatment for his injuries, and then released by to the same facility.

Protesters are demonstrating outside, calling for the facility to be closed, and for all such facilities to be closed so that people can be cared for in their communities rather than in "secluded" facilities.  Those who are in charge of the facility are issuing statements assuring concerned parties that everything is "fine."  Parents are upset - they are concerned about their children, and they don't want people demonstrating at the place where their children live - it is scary for their children to see these strangers marching and shouting.  It is scary for the parents to think of their children being thrown out of the place that has been a home to them - sometimes for many years (the youngster who died in the van had lived there for 6 years).

I hate seeing tragedies being twisted into opportunities for political grandstanding.  Is the situation at this facility awful?  Yes.  Do I believe that this facility needs to be shut down?  Probably - if not shut down, it needs to have a clean sweep and start-over.  There's a problem there that is ingrained, and it's not a simple matter of one or two employees, or "a mistake."  I know, from people who've worked there, that there is a substantial attitude that is abusive, and that there is a segment of the staff that not only tolerates abuse of residents, but threatens staff who might show signs of not tolerating it - maybe not the abuse that winds residents up in the hospital, but abuse nonetheless.  Not all facilities, however, are like this.  There are facilities where the staff genuinely care about their charges.  There are places where residents are safe, loved, and cared for.  There are some people, admittedly few, but some, who may not be as safe in a community setting, and who may need the kind of oversight that these facilities can offer.  This does not mean that people shouldn't have choices - they should.  But for those for whom a facility is necessary, we need for these facilities to exist also.  They need to exist, but safely, and properly.  This facility is not a safe facility; it doesn't mean there are none.

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And now, the owners of the Pennhurst property, which was one of the biggest state institutions in Pennsylvania, are planning to open a "haunted attraction" on September 23, with an asylum theme.  The lawsuits stemming from the horrors of the abuse, neglect and mistreatment that occurred at Pennhurst led to the closing, not only of Pennhurst, but of numerous state institutions across the country.  To use the memory of those horrors as an entertainment device is beyond appalling.  That's a demonstration I could get behind!

Where is the "Care" in "Caretaker?"

In this area, the recent death of a 20 year old autistic man is the subject of much sad conversation. He was left in a van after the driver ... forgot? ... him following a trip to Sesame Place that was made by four residents and two staff people at his residential facility.  People are, of course, horrified, sad, and fearful for their own children.


I think of my own son, and am, perhaps unfairly, relieved that he is high functioning enough that he is not so dependent on caretakers to be likely to be in this kind of situation.  It is inexplicable, to me, that two staff would have trouble keeping track of four clients.  In a prior lifetime, I worked with severely retarded "adolescent age" individuals (at the time, and in the place where I worked, that meant individuals from age 14 to 28; "retarded" meant anything from what we now consider cognitively impaired to autistic - as long as the person functioned as someone with a chronological age of 2-4, they were considered retarded).  I took two or three, by myself, to the local shopping mall.  It was "exciting."  It was sometimes a challenge.  Since I was a young worker at the time, and some of my charges looked "normal," I got some strange looks, but I never had any trouble making sure I knew where they were at all times, and I could never, never, have forgotten one.  The responsibility of taking care of these vulnerable and defenseless souls was very real to me.


Fast forward to today.  My son goes to ESY - Extended School Year.  I got a text message from him at about the time he is supposed to arrive at his program.  "The bus driver almost forgot to drop us off at school."  !!!!!  How can a bus driver, whose sole purpose is to transport children to a particular program, forget that he is going there?  There are only three children on the bus, and they all go to the same program.  Where was he going to go?  What if the children weren't a group of high functioning, verbal kids?  What if they were withdrawn, non-verbal, or sleeping?


What is going on, that people who are entrusted with the care of defenseless, dependent others, take their responsibilities so casually that they can "forget" those people in cars, vans, buses?

Eye Contact

I don't remember how the conversation got started, but somehow, the conversation did.  It's not unusual, in our household, for the topic of eye contact, to become a topic of conversation.  I guess that's not a "typical" topic of conversation, but then ...  Anyway, the issue of "you can have attention, or you can have eye contact, but you can't have both" came up, and my son was saying, while seeming to look directly at me, that he wasn't making eye contact even though I might think he was.  It seems that he has figured out a way of appearing to look people in the eye, while, for his purposes, not "making" eye contact.  I haven't gotten the full story yet - these things come in increments, and if I push too hard, I may never get the information, so I will wait, and get the pieces as they come, but it seems that he can look at people, without his attention being focussed on the eyes, so it isn't, in his view, really eye contact.  It works!  For his conversational partner, he is making eye contact.  To him, he is not, so he is not made uncomfortable.  As he was telling me about it, he said, "but I never know for how long I'm supposed to keep looking!"  It was at about that time that I told him he was holding his eye contact a bit too long - and too long gets creepy.  We both laughed.  He was in one of his moods when talking about these things was funny and it was okay to laugh about it.

The funny part of this is that we still run into lots of people who expect eye contact as an indication that someone is paying attention - people who know that it doesn't work that way, people who know that eye contact can be distracting and can interfere with attention.  When the people who know that still require the eye contact, how can we expect the people who don't "get it" to learn what we need them to know, and even more, to put it into action?  How can we get our children's teachers/therapists/providers to understand that on this issue, in particular, our children do not communicate the way that they do, and their body language is different - that those people need to "learn a new language" in effect - in order to communicate effectively with our children.  It is estimated that only 10-20% of communication is conveyed through the words we speak - the rest is through tone, body language, prosody, etc.  Well, if our children's tone, body language, prosody, etc. is different from the norm, some of that may be able to be shaped in speech and language therapy, but some of it won't; and to the extent that it won't, they need to have providers who are willing to support them by learning their language, and not constantly demand that they "speak" a foreign language.  Speaking a foreign language, no matter how fluent one becomes, is very exhausting.

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."

Book for the newbie parent

I've been reading "Making Sense of Autistic Spectrum Disorders: Create The Brightest Future for Your Child With the Best Treatment Options" by James Coplan, MD.  It's been taking me forever to get through it - partially because I'm finding it somewhat dense reading, and partially because I keep getting distracted by other things (life, you know).  The thing about the book is that I like it, but I'm not sure who the realistic audience is for it.  The target audience is, no doubt, parents of newly diagnosed children.  But it is so intense that I'm not sure that those parents could wade through it; and I'm not sure that the information they'd most want (which is not necessarily the same as what they most need) is at the beginning, where they would want it to be.  


Dr. Coplan gives a backdrop, of sorts, at the beginning.  This makes sense, yet most parents want ANSWERS, up front.  Before they get to the end of the book, where Dr. Coplan is warning them about trendy, possibly dangerous treatments, parents will have already been taken to a TACA meeting or two, caught up in a heart-felt conversation about HBOT treatments, and well into a GF/CF diet trial!  Dr. Coplan considers these things the modern-day equivalent of snake oil sales, and some of them can be dangerous.  He debunks many of the Generation Rescue claims bluntly and with no compassion for those who believe in them - or at least not for their beliefs.  I am not offended by this, but I do think it could turn off some who are confused and inclined to want to investigate "with an open mind."  Dr. Coplan doesn't see any gray area here, and sees any open mind in the area as open to having junk inserted.


He actually is pretty flexible, in the sense that he is open to the use of omega 3's, since he views it as not illogical and not dangerous.  The use, however, of dangerous and potentially lethal "treatments," like chelation, is something he has no patience for.  He doesn't, however, simply dismiss it - he explains, quite clearly, the dangers of the treatments - chelation can cause brain damage or death; HBOT can also damage brain cells, and the (questionable) benefits that have been observed can be obtained in less expensive and less dangerous ways.  


The part of the book I found most useful was his review of various methods of intervention - from ABA to Floortime, to RDI; various classroom approaches; explanations of the uses of OT, PT speech and language.  His review of the use of medication was also quite useful.


Another issue I thought was very important was that Dr. Coplan discussed the fact that ASD has what he calls a "natural history."  That is, whether or not a child receives a particular kind of therapy, or any therapy at all, there will be changes in the way the child behaves, interacts with the world, and matures.  Simply because a child progresses, one cannot ascribe all the progress to whatever intervention a child is receiving.  Progress will occur regardless, simply because a child is maturing, getting older.  Depending on issues, such as the child's cognitive level and degree of atypicality, the child's progress will be greater or lesser, but there will be progress, there will be changes.  The changes will not be even - there will be spurts, and there will, just as with typical children, sometimes be a two-steps-forward-one-step-backwards type of thing.  We can't view everything as being because of a particular intervention!


I wish this book had been out eight years ago, when my son was first diagnosed ... of course, much of what he says was not yet discovered then!

Vaccines, Autism, and Maintaining Friendships

I don't believe that vaccinations cause autism.

The more I learn about Dr. Wakefield, the more horrified I am by him.

I have friends who are certain that their autistic children are vaccine-injured.  I respect them, I know they truly believe this, and I even believe that some children are injured by vaccines - just that it is an extremely small number, and that the vast majority of people believed to have autism were not injured by vaccines.  In order not to offend those people who truly, deeply believe that their children were injured by vaccines, I don't post anything on Facebook about Dr. Wakefield, or vaccines, or the absurdity that I believe his dangerous, faulty "research" has wrought.   

They, of course, post a great deal about how awful they think Dr. Offit is.  They post to support Dr. Wakefield, for all he has done "for us."  I don't get it.  They look at "all the money" Dr. Offit earned.  They don't notice "all the money" that Dr. Wakefield earned or stood to earn from the tiny study he did, using unethically obtained tests from a too-small to be significant sample, drawing conclusions that had no support.  The damage that he has done is incalculable.  Aside from the people who have been exposed to and endured the diseases that they should, rightfully, have been vaccinated against, there is all that money that has gone into research, again and again, to disprove this connection.  And this continues to be done.  And the money that goes into publicizing the inaccuracies of Dr. Wakefield's theories - all this could have been used to research, publicize and provide services for individuals living with autism.  Legitimate research. Needed services.

How many children have been really injured from pre-natal exposure to measles, because so many are not being vaccinated?  How many have been really injured from the high fevers and other effects of the illnesses that these vaccines had all but eliminated?  

I don't know whether we live in an age of intense fear of conspiracies, or whether that was always an underlying "fear of the masses," but this kind of fear, which is based on a fundamental lack of understanding of the underlying science, is dangerous to everyone.  As science advances, and as the number of people who understand that science seems to decrease, proportionally, the fear and distrust is likely to increase ... to the detriment of all.

The Facts In The Case Of Dr. Andrew Wakefield

I know that the MMR/vaccine - autism issue is a highly charged, controversial one.  For better or worse, I've never thought there was a link between autism and vaccinations.  Do I believe there are some individuals who are injured by vaccines?  Of course.  Do I believe that the current increase in numbers of children diagnosed with ASD is due to immunizations?  No.  This came to my attention, and I really, really liked it.



The Facts In The Case Of Dr. Andrew Wakefield

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On Becoming One of "Those" Parents

What does it take to have one's child evaluated?  Privately?  At one's own expense?  You'd think it would be a slam-dunk - no big deal; easy-peasy, as they say to the kids in school.


Wrong.


Since any psychologist worth the fee will want input from the teacher(s) currently working with the child, you do need some, minimal level of cooperation from your child's school.  And schools can be incredibly uncooperative ... "incredibly" being the operative word.  What would possess a school to refuse to answer a psychologist's questionnaire, asking such "controversial" questions as: what are the child's strengths? what are the child's weaknesses? how could the child be better supported in school?  etc. Really.  


Why would a school want to turn a private evaluation, being paid for by the parents, with no possible request for reimbursement by the school district, into a confrontation?  Why would they start spouting about "policies" that turn out not to exist and are then deemed "practices" but aren't written down anywhere?  What do they think they could gain?  Don't they realize that they are making it look like they have something to hide?  Are they deliberately trying to make parents distrust them?  What do they gain by that?  By making parents have to beg, plead, insist, bring in advocates/lawyers in order to simply get a form filled out, what kind of working relationship do they think they are advancing with the family?  What do they get out of this?  How does making a parent feel like "one of those parents" help the school?  How does it help a child?  


And it circles back to ... what are they trying to hide.  A parent who starts out with a nagging feeling that they (the parents) and the school might be missing something, and therefore want "fresh eyes" from outside, becomes a parent who distrusts the school, who believes that it is not that the school is missing something, but that it is deliberately withholding information and services from a family who needs it.  The trust is breaking, maybe broken.  What do they seek to gain here?  The evaluation will, ultimately, get done.  The information will, ultimately, be obtained.  


And the nastiness of the process?  So unnecessary, and that will last, and forever taint the process of negotiating and evaluating the services being offered and delivered.  What a waste.

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?   

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.