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!