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.