Tag Archives: Special Education

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

An Open Letter to My Teachers

Day six of the recovery challenge asks you to write a letter to someone who has harmed you or has made you feel bad. I could write a number of letters, but then again an equal number of people could write them to me. Besides, such letters are not always meant to be seen by the people they’re about, so the blog isn’t always the right place to post them. I will therefore not write a letter to one specific person, but to a group of people. Originally, I wanted to write a letter to my elementary and secondary school bullies. Then I realized that my bullies were kids just like me, and they didn’t know better. I therefore will address the letter to both the bullies and their enablers, mostly teachers. After all, bullying by kids who don’t know better is bad, but worse than that is the enabling of it by adults who should know better..

Dear bullies, dear teachers,

You, bullies, are too numerous to address individually. Most likely, none of you will ever even see this letter. It is an open letter, published on the Internet, not so much to shame you – which is why I won’t name you -, but to make you aware of the effects you had on me and to process these effects for myself.

Enabling teachers, you, too, are too numerous to address individually. Some of you will remember that I addressed you by name on an old version of an old blog. Rest assured, when I transferred the blog to a new site in 2007, I changed your names. I will not violate your privacy like this again. This letter is not intended to shame you personally, but again to make you aware of the effects of bullying and the inherent disability discrimination in your behaviors. If you ever teach a disabled student who is being bullied again, I hope you’ll remember my advice. Again, this is an open letter, so even if it doesn’t reach you, I hope it will reach teachers of disabled students anywhere.

Bullies, you, too, will most likely remember my name. For some of you, I was the only girl in your sixth grade class. For others, the odd, blind girl in your eighth grade grammar school class. I was the “bitch” to one of you, the “dwarf” to another.

In sixth grade, the only reason even the teachers could give for you bullying me, was that I was too smart. Yes, I was too smart, which is why YOU bullied me. Teachers, this is inverted reasoning. Bullies choose whoever they see as the easiest target. Making a buly victim a less easy target, may help that particular victim (although it is more likely to make them feel bad about themselves), but it will not end the bullying.

In eighth grade, your reasons were more valid, if reasons for bullying can ever be valid. Hint to the enabling teachers: NO THEY CAN’T. I didn’t take care of my personal hygiene. In your words, I stunk. I reacted with blunt comments when you wanted to help me and I didn’t want to be helped. The teachers favored me and some gave me higher grades than I deserved. I understand you had a hard time communicating these annoyances, but instead of going to my tutor, you chose to bully me until the tutor decided to go up to you. He organized a class for you in which you could spew your criticism of me. You eagerly did so, and I was told that if I just took care of my personal hygiene, stopped being blunt and stopped being favored by the teachers, the bullying would stop. It did, for a while.

A quick note on favoritism: giving a disabled student extra time on tests or an aide or whatever when their disability warrants it, is not favoring them. Giving a student a higher grade than they deserve, is. Make sure the school has documentation on the student’s needs: an IEP or 504 in the U.S., a statement of special educational needs in the UK, and I have no clue what it’s called in my own country because such thigns didn’t exist when I was in school; they hopefully do now. Such a document will detail the student’s accommodations and services. Non-disabled students should not be made aware of the peculiarities of the disabled student’s documentation; just say they have a statement/IEP/whatever and that it’s not the non-disabled students’ business to decide on the fairness of accommodations.

At this point I want to address the teachers again. Whenever I was troubled, as I was often throughout elementary and secondary school, you attempted to change me. Seven years into psychiatric treatment, I understand all about personal responsibility, and I understand that if I wanted to make friends, I had to be socially adept. I realize now that I didn’t have the social skills to be a good friend or even to avoid being an easy target for the bullies. That, still, doesn’t make me responsible for the bullying I endured.

You also need to know your limitations. You are not equipped to diagnose (or rule out) autism or to offer social skills training to an autistic student. You are not counselors, you are teachers. I understand you were the only ones to be reached when students saw me in despair, but please know your limits.

Now I want to talk about the effects bullying and its enabling had on me. Bullies, you made me feel like one piece of crap. Then again, enabling teachers, you made it worse by making me feel responsible. On said old blog, I wrote a post about a teacher who had kids vote an autistica student out of the classroom. I know you did your best to keep me in. I realize you, teachers, did what you thought was best given the tools and knowledge you had at the time. This is why I want to tell you to know your boundaries.‘I was undiagnosed with respect to autism at the time, but some of you knew I suspected it and actively worked to get this thought out of my head. This is beyond your professional responsibilities as a teacher.

I want to make it clear that all of you, my elementary and certainly secondary school teachers thought you were doing what was best for me. I know that the school system as it was in the 1990s and ealry 2000s wasn’t good for a multiply-disabled student. I can only hope it’s better now. I just want to say that with this letter, I’ve hopefully made you aware of some pitfalls of teaching a disabled student and how to avoid them.

Lastly, I want to thank my secondary school tutor (if you ever read this, you’ll know I mean you) in particular for making sure the principal didn’t single me out for a celebration of prestigious school achievement for being able to educate a blind student. Thanks for that.

Education of Disabled Students: Inclusion vs. Mainstreaming

In his book, I’m Not Here to Inspire You, Rob J. Quinn published an essay on mainsreaming vs. inclusion and why inclusion has failed. He writes that, when he was mainstreamed in the 1980s, he had to somehow prove he was capable of going to regular school, whereas currently disabled students are included in regular education at all costs.

I was mainstreamed from 1999 to 2005. I, like Quinn, had to prove I was capable of being mainstreamed. Unlike Quinn, I was the only student with my disability in my school, which I until I read Quinn’s essay considered a definition of mainstreaming: the school really caters to non-disabled people but allows disabled people in who prove they’re capable.

Quinn considiers inclusion to do a disservice to disabled students because they’re given too much assistance. As an example, he writes about a girl with a similar level of cerebral palsy to himself who was given special assistance in all of her classes, while Quinn had to get by without extra assistance. Similarly, except in a few math classes, I did not get extra assistance. In these math classes, they were older students giving me assistance, not aides.

I understand Quinn’s point about overassistance. However, I see him writing from the point of view of someone who doesn’t have a cognitive disability. He points out that he heard of a girl with Down Syndrome being placed in advanced classes because “the kids are nicer there”. I can understand this erodes the meaning of advanced placements. Besides, I agree with Quinn that kids with disabilities need to be prepared for the real world and therefore as I said should not be overprotected or overassisted. However, this does not mean that students with cognitive disabilities need to be shoved away into special ed classes until they somehow prove they can get by in regular education.

Another objection Quinn has to inclusion is the lack of exporsure to other students with similar disabilities. When he was mainstreamed all kids with cerebral palsy went to the same schoool in the district. This is not what mainstreaming is like here: I was the only blind student in my school. In this sense, I’d love to have been given an education like Quinn’s, having exposure to people without disabilities as well as those with disabilities. In the Netherlands, unfortunately, at least in the 1990s, you either were the only kid with a sensory or physical disability, or you went to special education and were surrounded by students with your disability.

Quinn concludes that students with disabilities, according to him, need to somehow prove they are capable of mainstreaming if they want to be in regular education. I disagree. After all, people with significant disabilities shouldn’t have to prove they have a right to live in our society, right? I know some pro-institution people disagree, but other than in his essay on mainstreaming, Quinn doesn’t advocate exclusion. Maybe he would for those with intellectual disabilities. I for one won’t.

Educational Psychology: Recommendations for Parents

This post, in which a mother talks about the educaitonal psychologist observations of her child, reminded me of my own experiences with ed psychs and schooling recommendations, and the advice I want to give parents based on them.

First, in the United States I know that children with an individualized education plan (IEP) need to be assessed once every three years to deterine if their educational diagnosis still fits. This seems reasonable to me. If you disagree with an educational psychologist hired by the school, you can ask for a second opinion. This means more testing. Don’t do this over and over again. I, for one, was tested three times within an eighteen-month timeframe. Determine whether you will ask for a second opinion based on what was assessed, not what the outcome was. Testing needs to be comprehensive, including assessment of cognitve, social and emotional functioning. Educate yourself about your child’s disability to know which other aspects may need testing (eg. tactile skills if your child is blind). If testing wasn’t comprehensive enough, this is a reason to ask for a second opinion, for exaple, if your child is autistic and only their social and emotional functitoning was assessed. This was the case with my first assessment, and it was logical that my parents sought a second opinion. When they sought a third opinion after the second ed psych’s conclusions based on comprehensive testing didn’t suit them, well, that wasn’t. As I said, once every three years is a reasonable tiemframe to get re-assessed. Unless there are truly good reasons for it, you shouldn’t ask for an earlier re-assessment. Remember when you had to take your standardized tests in school. An educational psychology assessment is as stressful.

As Dinky’s Mom says, an educational psychologist cannot make a diagnosis or get your child into a specific school. They can only report on your child’s abilities and difficulties in various areas of functioning and recommend support strategies. You will usually need a medical diagnosis from a pediatrician or other qualified health professional to get your child into a specific kind of school. For example, when my parents first sought special education for me they checked out a school for children with mobility impairments, but my motor deficits were not severe enough to be allowed into that school. My primary disability was blindness, so I was accepted into the school for the blind. (I first went to a school for the partially sighted, but this shcool now serves blind children too.)

Make sure you check out all aspects of a special (or mainstream) school before you decide on whether to apply there for your child. Again, a school deals with the whole child. Dinky’s Mom was asked to check out a school that serves children with severe intellectual disabilities, while Dinky is academically able. I, too, found myself in schools where the majority of the other kids had some level of learning difficulties, even though I went to the “single disability” class. In the Netherlands, most children with disabilities nowadays don’t go to special schools due to budget cuts, so the kids who do likely have more than one disability. Then again, so do I.

I remember my parents were ultimately fed up with special education and decided to mainstream me despite there still being options for special education that may’ve been more suitable than the schools I’d attended alreaydy. However, I’m aware that the perfect school does not exist, and this is one big reason I’m for individualized educational programming. I remember the second ed psych, the one who did the comprehensive testing, put in her first recommendation that a school needed to be appropriate given my high academic abilities. At the time, only mainstream schools met this need.

I understand my paretns having pressured me to do well on the ed psych tests and to cope in mainstream school. I was loutright lying to the third ed psych (my parents claim he’s far too clever to have let that happen, but I know that I did), because I knew that severe social and emotial problems were the reason I was advised into special ed the year before. The man still managed to spot some of my problems, of course. Anyway, as I said, ed psych evaluations are stressful. Don’t make it worse by talking about what outcome you hope for in front of your child too much.

Lastly, once you’ve found a suitable school, don’t expect it to always be suitable. I was mainstreamed, coped okay for the first month or two, and then was presumed to be doing fine for the remaining nearly six years. I did get more testing, but that was only because I participated in a preemie follow-up study. Besides, psychological testing isn’t everything.

Schools, Know Your Place

Yesterday, Jill Raffiani posted an interesting blog post on education system involvement in parenting. The reason for her post was her having seen a video of police arresting a father for picking up his kids from school (apparently, they were picked up early or something). I have not seen the video so can only go with what Jill says about it.

In the Netherlands, we have mandatory attendance legislation, so homeschooling or taking days off school is not allowed. Then again, even in this situation, when a kid is missing school often, the local government education officer gets involved, not the police. I understand that sometimes harsh measures need to be taken to get kids to school, and it’s not like the school has no role in this at least here in the Netherlands. Then again, assuming this Dad didn’t constantly take his kids out of school, it’s outrageous to have him arrested. Again, I don’t know the situation beyond what Jill had to say about it.

Jill continues to discuss school involvement in more minor parenting decisions, such as what the child gets for lunch. I responded by detailing a situation that happened when I was at the school for the blind in seventh grade. Kids even in high school had to eat lunh under close supervision, and there were relatively strict rules about what you could bring and how you were supposed to eat your lunch. Besides, school hired another organization for lunch supervision, and my parents didn’t want me to become a formal client there. I was taken out of lunch group and had to eat in the classroom by myself. Then, the lunch staff told a lot of my fellow students to stop hanging out with me because I presumably was having a bad influence on them. Now this is so totally outrageous. Firstly, schools have no business dictating parental decisions on such minor details as what to eat for lunch, how to eat it and where to eat it. Secondly, it wasn’t me who had made the decision to stop going to lunch group. I was in fact expelled from lunch group because my parents didn’t want to have this external organization, with its undoubtedly large number of psychologists and other nosey folk, to document on me. My parents didn’t say I couldn’t eat with the other kids, although they didn’t like lunch group for secondary schoolers, but I couldn’t attend because my parents refused to have me become a formal client there. Fair enough, but what happened next, ie. the lunch staff telling kids not to hang out wiht me, is, let’s just say, rather childish.

Unless a child is clearly being abused – and getting the wrong school lunch is not abuse -, schools have no business interfering in parenting. Schools are there to educate kids, and in cases of special education, where perhaps life skills may be addressed, the parents still need to sign the IEP. I do not feel that parents hire the teachers in a way, like Jill says, simply because this is not the case in the Netherlands, except for daycare, which Jill was indeed talking about. I also have a problem with the phrase that teachers need to work on parents’ terms, but maybe that is a case of semantics. Parents and teachers each have their roles, and they need to mutually respect each other. Schools are naturally in a position of power, and they have no right to abuse that position to force parents to parent their children a certain way.