So sue me.

You need to read the previous post and comments if you are interested in following this one.

I thought I was writing a post disagreeing with another blogger’s use and definition of “special education” and some other issues, and I end up getting beat-up by “friends” … ;)

First, the use of the r-word. Four years ago I stood in front of a judge, in a court of law, and had to swear that Pearlsky was “retarded.” The word came up a few times. Educators who hate the word often do refer to “MR” (not “mister” but M. R.) which is code for mentally retarded. They will say things, all in a “good” sense, “If the testing shows MR we will …” In my book, saying MR is the same as saying mentally retarded. Now, of course I get the vileness of the word when kids are teasing each other, etc. and in my day being called a “spaz” or “spastic” was really bad and hurtful, but Pearlsky is very spastic. Yes, there are times I use the word for effect (see here), and I do generally refrain from using it, but personally, I don’t think it puts me in bed with Ann Coulter when I use it (an argument can be made that Ms. Coulter suffers from MR …).

Second …

“He does not get that being a bright, articulate man in a wheelchair has absolutely nothing to do with us and our children. His disability has nothing in common with Pearlsky’s other than neither can walk.” In facing discrimination, social alienation and battles for accommodation, he has everything in common with “our children”. (comment from last post)

I can only speak for myself and Pearlsky, but she has faced NO discrimination, social alienation nor battle for accommodation. There are negative reactions to the two of us in that me being a single father taking care of a young woman, but that is it. We have been to water parks and hotels with no problem. No issues in public, restaurants, etc. I really don’t see how there is even a weak tie between anything Mr. Peace claims to experience and what Pearlsky faces.

“His disability, his world, has nothing to do with special education.” Perhaps, but I think you are incredibly naive to imagine that individuals in wheelchairs, intellectually competent as they may be, do not face stigma and assumptions about their intellectual abilities in school. What is the law and what is actually happening in schools is another affair also. (Ibid.)

One must understand that anything out of the norm costs a school money. Implementing a 504 plan, and especially implementing an IEP, costs money (two of the primary parts of “special education”). A lot of money. The school does not make negative assumptions about the intellectual abilites of anyone, that is NOT in their best interest. It is often a fight to get special accommodations or an IEP. I have never met a single educator (and especially not a single administrator) who makes a negative intellectual assumption about any child simply by knowing there is a wheelchair involved. Sorry, but I do not buy this.

Not all can afford an advocate, not all represent themselves or their child’s interests very well. (Ibid.)

Free advocacy for any of my readers who cannot afford my rates. Period.

Furthermore, many wheelchair users do ride “the short bus” which is usually also called the “retard bus” because few (are there any even?) regular buses that carry the other children that go to school have lifts on them. I imagine only the adults around you call it “Pearlsky’s bus”. Hang around the other high school kids for a while. Short bus = stigma.

I took issue with his quote, ” “Special education” buses are routinely referred to in secondary schools as the “retard bus” ” primarily because of his use of the word “routinely.” “Routinely” as in “standard practice” or “regularly” or “habitually”? I asked, nothing derogatory is known to be said at Pearlsky’s “normal” high school. I asked a few people. Four parents of “typical” kids had no clue of this. Maybe it is routine at the college where Mr. Peace teaches, and I can not argue if he is talking about first hand knowledge, but it is not routine around here. Is there a stigma being on the “short bus”? Maybe, if some school kid cares enough to think about it. Is it “routinely referred to in secondary schools as the “retard bus”” … I doubt it.

Remember, our kids, ALL KIDS, are entitled to a FREE APPROPRIATE PUBLIC EDUCATION (FAPE) in the LEAST RESTRICTIVE ENVIRONMENT (LRE). They should be as mainstreamed as possible while ensuring an appropriate education. A parent complaining that their lazy child only gets C’s does not have a case for special education; students are not guaranteed a superior education, nor a straight A education, but an appropriate education.

An appropriate education is guaranteed and in as “normal” a placement as possible. That may be a regular class room, it may be in a resource room, it may be in a special education room. It may include basic algebra or it may include trying to hit a switch.

Did Pearlsky get an “appropriate” education? Good question. But if not, whose fault? The schools? The parent? The holy one, blessed be She?

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Special Education is for retards

Yes, I know, I am not supposed to use the word “retard.” I don’t prescribe to that prohibition, but in general I don’t use it. I did in the title to get your ire up. And while it is up, I want to talk about the phrase “special education.”

This post is not so much about Pearlsky. I have a lot to share, it’s just getting harder to. I have to change that. But right now, let’s talk about our kids, the education system, and YOU.

As you may or may not know, I have changed careers and have become an educational advocate, full time. Some people would say a “Special Education Advocate,” which I do say, but I am also dealing with bullying issues and other stuff. An argument can be made that I am in my 18th year of this career, and that is true, but as a paid position, a bit less. During those 18 years, whenever I interacted with the school, I had one basic rule, I made sure I was right. In that I mean I would check the law, check with doctors, whoever was involved, and before starting “shit” with the school, I knew I was right. Or I did not start. That did earn me a lot of respect from the “opposing” view. I take great pride in the fact that most of my emails safely ended with “… and please tell me where I am wrong.” Yeah, I can be a dick, but I was right on the facts. I made sure.

If you are going to talk about education, about “special education,” at least know what you are talking about. What it is, what it means, where it comes from. Be right.

There are vocal bloggers, among them Ph.D.’s and educators, who give a bad name to good things.

If I were to say to you, “I need to fix the whatchamacallit thingy, but I need a special screwdriver,” the definition of “special” is fairly obvious, right? It pretty much means “atypical” or “different.” That is the most common definition.

So when one bloviates:

Students that are atypical are quickly shunted into “special education”–a term I despise. Atypical students and adults with a disability are not “special” but rather merely different. Special implies an unfair advantage is being given to those who are atypical. (link)

I have to shake my head and scream. I don’t really care if the blogger despises the term, that is fine, but let us understand the term. Let’s see what “special” means in this case, not what he claims it implies.

As early as 1965 the concept of special education is mentioned in law …

… to expand and improve their educational programs by various means (including preschool programs) which contribute particularly to meeting the special educational needs of educationally deprived children …

… other specially designed educational programs which meet the purposes of this title. …

(PUBLIC LAW 89-10-APR. 11, 1965, “Elementary and Secondary Education Act of 1965″ … “To strengthen and improve educational quality and educational opportunities in the Nation’s elementary and secondary schools.”)

And then it was formally defined in 1975 …

The term ‘special education’ means specially designed instruction, at no cost to parents or guardians, to meet the unique needs of a handicapped child, including classroom instruction, instruction in physical education, home instruction, and instruction in hospitals and institutions.

(PUBLIC LAW 94-142—NOV. 29, 1975, “Education for All Handicapped Children Act of 1975″)

And to claim that special education ” implies an unfair advantage” shows a complete lack of understanding of FAPE and more. There is no implication, there is law, there are definitions.

The blogger continues …

I am deeply pessimistic about the future because secondary schools teach children all the wrong lessons about disability. The term “special education” surely does not help the perception of disability. Nor does the continued use of segregated schools and school transportation industry. Too often students with a disability are shunted off to resource rooms. (link)

Shunting off to resource rooms? If the student is in a “resource room” inappropriately, then that is contrary to the law and is a much the fault of the individual school as it is of the parents approving the placement. The law guarantees the “least restrictive environment” (LRE).

To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

IDEA, Title I/B/612/a/5/A

And he continues …

Lip service is paid to “mainstreaming”. … Children by the time they are in 1st, 2nd, or 3rd grade have learned a basic fact as it relates to disability: segregation is the norm. Worse, it is socially acceptable. “Special education” buses are routinely referred to in secondary schools as the “retard bus”. The consequences of a segregated system are profound. (link)

If putting children in the LRE means a classroom that is physically separate from the “mainstream” classroom, then yes, you can call that a form of segregation I guess. What is the alternative, the MOST restrictive environment? If the mainstream bus does not have wheelchair access, should the child be forced not to go? The fact (?) that the accessible bus is “routinely referred to” as the “retard bus” is something I would like to hear more about. In our high school, I have heard it referred to as “Pearlsky’s bus,” and yes, she is a retard. The consequences of a segregated system may be profound, but if not an LRE then what? And if the LRE is not being implemented, then that is the problem, not your perceptions. And it is a matter of law. Is the law sometimes violated? Sure, and if it is, fix it.

Mothers routinely tell children when they see a person using a wheelchair “to watch out”. I have heard this line for 37 years. Bipedal people routinely leap out of my way as though I am a locomotive going 75mph and am out of control. The fact I am 20 0r 300 feet away form them does not matter.[sic] A wheelchair is to be feared. Disability is be avoided at all costs. My wheelchair is thus akin to a portable social isolation device. (link)

My mother is guilty as charged. Yes, she has told me to “watch out” when a person in a wheelchair was nearby and our paths were to cross. And my horrible, prejudiced, uneducated mother would also say “watch out” if a bicyclist was riding down the sidewalk towards us. Or someone on roller skates. And, my god, I hate to even admit this, mom even utters those dreaded words, “watch out” when my grandmother was trying to get past us with her walker. And you allude to it being the wheelchair that is feared. Or the disability. Maybe you are wrong there as well. Maybe it is something else.

Educators simply do not want to deal with students who do not learn at the prescribed rate. Worse, educators simply lack any imagination when it comes to educating a student that learns differently. Educators teach students to take and pass tests. Tests in secondary education define success. The business model of education reigns supreme. (link)

Words of projection from an educator? I hope you don’t teach special ed …

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Dead would be nice

About six months ago someone at school asked me if I wanted Pearlsky to participate in graduation. She is turning 22 in October so school ends for her then. Technically I guess this would be her graduation. Note that she cannot “graduate” since she did not pass the No Child Left Behind mandatory state test, she will not get a diploma, it is all a farce. I said we would attend, she would not participate.

Nothing for six months.

Last Wednesday, four days ago, I got an email from the director of special education, “Just to be sure, Pearlsky will not be participating in graduation, correct?” I responded with “Correct. When and where is it since we will be there.”

Ummmm … in four days. Do you want tickets? Special seating?

And I wasn’t told … why?

It is a very warm and sticky day; we walk there. The graduation is on the field. We arrive as the other graduates are walking onto the field. She is supposed to be among them. Walking. Laughing with friends.


Pushing her chair is not so easy on the field, but we move around a bit.

She is supposed to be wearing a cap and gown. Walking with her peers. Talking, laughing.

Instead, we are hanging out in the back, walking along the side, well, I am walking, make that pushing, she is riding, bumping along.

There is one guy in the special education administration that I am, well, not too fond of. He has messed up too many times, and I would not allow him to deal with an IEP for my hamster, if I had one, let alone Pearlsky.

He walked over to us at graduation, and asked if it was ok to give Pearlsky a tassel. No one else bothered to say anything, offer anything, nor interact. But he did. And you know what? He did something right.

At some point one of the speakers said “Will all of the graduates of 2014 please rise.”

Fuck you.

It hits you out of nowhere. You think all will be ok, at this point you can handle anything. Bullshit. Like an unexpected left hook, life just crashes.

I’ll trade you one crippled retard for a dope smoking pregnant teen. How about for a drop out on probation? A middle of the road B student going to a good state school? Yeah, I’ll trade you. How about for a kid that can stand?

And no, it’s not about losing or leaving Pearlsky or David nor not wanting them nor not loving what I have, what they are, and if you think that is what it is about, well fuck you too.

I will die never having seen my child get a diploma. Lots of people die in that situation. It was not my plan. Not my hope. Not my dream. I will never walk my daughter down the isle. Never be proud of her accomplishment. I use the singular for a reason, seeing that so far there is not even one.

Want to talk about graduations? Here is an interesting link, but first a definition:

gulag: “… a system of labor camps maintained in the former Soviet Union from 1930 to 1955 in which many people died.” Got that? Many people died. Forced labor camps. Consisted of many more camps with many more prisoners over many more years than the Nazi concentration camp system did.

Personally, to see my child walk in a graduation, laugh with friends, they can put me in a cage hanging from the ceiling. But that’s me. What do I know? Here is that link.

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We are both back. Scary, no?

By now, EVERYONE has seen my interview. Well, not everyone, but we will get to that in a bit.

I do need to make some corrections, apologies and acknowledgements.

I talk about Elise, how we dated for “five or six years … I should have married her.” Well, as Elise so gently pointed out to me, it was SEVEN YEARS, SEVEN not five or six. So, it was seven. SEVEN.

The heat of the interview lights and the high pressure from the interviewer conspired to make me forget the title that Cerberus held at the residential facility where she worked. She was the “Head Nurse” … ok, I have been told that that term is archaic and, well after living with her for six months, no, we will not call her a head nurse. She was the Nurse Manager.

Freya is upset that she is not even mentioned. That is an artifact of editing, of which I had no control. With her being such an influence in who I am today, well, it is what it is. There are allusions to her in there, for what that is worth. I owe her a lot.

Oh, and yes Yelena, “statuesque” is a complement. Absolutely.

And Clotho? Yeah, should have married her when I had the chance.

Please feel free (alright, encouraged) to pass the videos on to others. You can cut and paste this link ( and just put it in your Facebook status! Or on your blog. I am hoping that Ellen sees it, I go on her show with Pearlsky and finally get our RV! Or Joe Scarborough (has a disabled son) or, better yet, Mika! Or any one of the Kardashians. Hmmm … But do feel free to share.

The interview was conducted by Jennifer Johannesen for her Conversation Library site. It is a collection of video-recorded conversations: remembered accounts, personal reflections, best advice. Organized by interviewee and topic. She designed it for people who wish to learn from the healthcare experiences of others, including patients, families of patients, clinicians, caregivers and interested friends.

Jennifer has been a patient advocate since the birth of her son Owen, who had multiple severe disabilities, in 1998. Owen passed away in 2010 at the age of 12.

Since then, Jennifer has written a book about her experiences and continues to speak and write about disability issues. Jennifer is also pursuing a Masters degree in Bioethics, due to complete in 2016. Wait until you see the interview I will do of her …

At the moment, The Conversation Library is her personal project, supported and funded solely by Jennifer.

While you are passing this link along to all your friends, tweeting and Facebooking it, I will be in Pearlsky’s last IEP. This Tuesday.

Who will be there you ask? Let’s see … me, her mother, the typical team from school, the school district’s lawyer, my lawyer, someone from the state’s department of adult social services (the adult version of child protective services), someone from one of the adult programs, etc.

Yeah, I’ll behave. Sure. Ain’t you glad I’m back?

(Speaking of back, who woke Ken up?)

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Marriage is a wonderful institution, but who wants to live in an institution? ~Groucho Marx

(Feel free just to skip to the third and final video of my interview at the end of this post.)

Within two or three months of Pearlsky’s birth we were clearly told that marriages with kids like her just don’t stay together. Many people told us this, the pediatrician, other doctors, even clergy and friends. Of course we did not believe it, not us, we were highly educated, in love, we could deal. (SPOILER ALERT: My nom de plume is Single Dad for a reason.)

I don’t know of any good, solid marriages that include a child like ours. Granted, I don’t know of all that many good and solid marriages that don’t include a severely disabled child, but I digress.

Why do our marriages suck and/or fail?

There are many reasons, but I think a primary one has to do with the fact that we come to the situation with no experience, no basis of reality. How many of us have previously had a severely disabled child? Or even grew up along side one? Both spouses are thrown into a situation they have never been in before, a life-changing monumental situation. And neither have any direct (nor typically indirect) experience or knowledge about it. So with the totality of your experience up to this point in time, you are thrown into the world of severe disability. There are no books, manuals, game plans, let’s face it, they are all bullshit when it comes to this. What happens is that you both naturally handle things differently, neither with experience, and let’s face it, neither knowing what the fuck you are doing.

One may do more research, you may research together. But research what? What do you really learn from blogs? And how many blogs really pertain in any way? (I know a great blog, by the way … )

Often one spouse becomes more of a caretaker than the other. One spouse dedicates more time than one would to a “normal” child, and that takes typical time away from the other spouse. Or one becomes overly controlling, needing to control everything that happens to and with the child, to the point of abusing the other spouse with bizarre demands even if they are centered around the child (a post for another time). Or denial, burying one’s self in work or other activities so as not to have to deal with the child. Or one becomes so enwrapped in the total care of the child that all else is left to flounder. In all these cases, we handle the situation differently than our spouse does. And inevitably our spouse is doing it “wrong.” Then comes the resentment, guilt, anger, controlling abuse, disappointments, and more. Oh, did I say love? Partnership? Cooperation?

Whatever the reason, our marriages fail. Or, at the very least, are not what we imagined, what we hoped for, what we want.

Part 3 of the 3 part interview … (this one even has a happy ending)

Discussions on dating, terminating, and living.

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