Hindsight sucks

I have been a voracious advocate for Pearlsky for 22 years now. Eighteen of them were primarily advocating for her with regards to school. Trust me, the advocacy goes on.

I like to think I was pretty good. Effective. The majority of my emails to school, the ones where I needed to be advocating for my children, typically ended with “Please tell me where I am wrong.” They rarely if ever did. It is interesting that to this day that tag line is still mentioned in the superintendent’s office. They agree; I typically was not wrong. I am not patting myself on the back, it took research and sometimes swallowing what I really wanted, in order to make sure that I was right.

I am now taking on special education advocacy jobs that other’s don’t want. I have been hired by a young woman, 19 years old, who is fighting against her mother getting custody, needs advice with her special education decisions, etc.

The one that hurts is a five year-old boy. I got a call from a social worker at a palliative care facility about a grandmother who had full custody of her severely disabled grandson. No one has ever explained to me where the mom and dad are. Grandma appears to be uneducated and of a lower socio-economic status shall we say. The social workers do not know education law, and for various reasons Grandma was refusing to send the boy to school (not mandatory until age six, sort of). The boy’s IEP gives him various services including a full time 1:1 nurse. Oh, and there is no money for an advocate.

I went to visit Grandma and the boy. I saw Pearlsky. I saw David. I saw Chris. I saw Sophie. I saw another one of our kids. He is cute as hell (do real men-bloggers say “cute”?), fully disabled, and gave me a crooked smile to die for.

The case may go for a hearing, but I think I am working out a solution for both parties. I will talk about this more in another venue, this is Pearlsky’s blog. But I mention this case because it brings me back 17 years, back to Pearlsky in my arms, or lying on my chest, a toddler (alas, one who never toddled).

I have learned an incredible amount. I was a good advocate for Pearlsky, but the laws have changed over the last 20 years, and now my knowledge has exploded.

I recently won a bullying case. A big one. How? I did a lot of research and had an inkling that I could claim sexual harassment as part of it. Part of the bullying was the equivalent of teasing Mary Tut by calling her Mary Slut. I researched. Found things called “Dear Colleague letters,” “Special Education Advisories” and more. I told the parents what I found, and over the objection of our lawyer, and later to the great consternation of the district’s lawyer, I filed a complaint with the feds (U.S. Department of Education, Office for Civil Rights – “the OCR”). It took a while, but we won. Big time.

Back to Pearlsky. Remember that case against the school nurse who would not allow Pearlsky to get her amino acid, the only thing that keeps her alive? One phone call to the State Attorney General Office and her Director for Civil Rights (who is now the AG) immediately called the Superintendent and demanded he fix the situation. It still took about three months for a resolution. Now I know … one complaint to the OCR and things would have been much different. Quicker results, retraining, shit hitting the fan, and more. I did not realize the full civil rights angle nor the power of the feds.

Hindsight. I could have done much better for Pearlsky, but I did the best I could with what I had. And yes, I know I did very well. All of that experience, and all my new knowledge, is making me that much better at advocating for others.

I guess it is time to have another kid …

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Count to 22. Or is it 21? Either way, ugh. And Fort Knox.

Federal laws and regulations declare that eligible students receive special education “through age 22″ and “between the ages of 3 and 21, inclusive …” States interpret this differently. Some states end special education at the 21st birthday, others at the 22nd. Thereafter, the state has adult programs. The laws about adult programs are vastly different than those concerning schools.

About a month before Pearlsky’s 22nd birthday she went into an adult program. She would be the youngest in any program. We checked out five possible programs, three were so incredibly depressing and difficult to even look at that I honestly quietly slipped into the bathroom at the first I visited and threw up. These programs were recommended by the state and the school.

That program was diametrically opposed to Pearlsky in every single demographic. Age, race, gender, etc. The staff looked depressed and most “clients” were just sitting around doing nothing. “Nothing” as in NOTHING.

There was one program that seemed perfect. We went through much of the intake, the staff was excited about Pearlsky, and then when we were just about done with the process … nothing. Silence. They would not return my calls, nothing. They sealed up like Fort KNOX. It was so bizarre. My best guess is that someone in the hierarchy found this blog. I don’t know. There is one woman who does know, and she may see this. I hope she does and reaches out.

Pearlsky started a program that was our second choice. I visited every day. And typically, I found her doing NOTHING. The woman running the program is an SLP (speech and language pathologist) by training, and an incredible micro-manger. She had rules and they had to be followed.

  • Any activities had to be AGE appropriate. Pearlsky was not allowed to have any “toys” or interactive activities that were not age appropriate. iPads are frowned upon, but if she had one, she could not have items on it that were not AGE appropriate. (Note: there were paper cut-outs on the wall and hanging from the ceiling of chickens and things; a multi-color birthday chart was on the wall, etc.)
  • Pearlsky could not be given medications by oral syringe. Period. She must use a cup or a spoon. I had doctors write orders for the oral syringe, they were ignored. It is the only way she has ever taken medicine for the last 22 years. The nurse wanted to use the oral syringe; not allowed. Why? No reason given. (Note: the nurse would take Pearlsky into her office to give her meds, lock the door, and use the syringe.)

Pearlsky would come home famished. No reason given. (Duh.) And more. And, there are no laws to protect her, no recourse but to go somewhere else.

After talking to some other people, I decide to call the state agency responsible for Pearlsky and her adult program.

I’ll make you a deal. Give me the money you pay those people, and I will keep Pearlsky home, not feed her, barely give her medicines, and have her sit and do nothing. Oh, I will let her use an iPad with one non-age appropriate app.

And you know what? They agreed. For real. On Pearlsky’s 22nd birthday, the day the school district stopped paying for her and the day the state took over, she stopped going to hell the program. I have access to a bunch of money and hire people to work with Pearlsky at home, to get year round tickets to fun things for her (aquarium, zoo, children’s museum, etc.) and more. It is a bit of work (they don’t just hand me a pile of unmarked 10’s and 20’s) but it works!

While under 22 (however you define that) your child is protected by IDEA, NCLB, FERPA, and many more acronyms which now are vital in my special ed advocacy role, and vital to you when dealing with your disabled child and school. After that, there is not much. No real protections in the same sense. But you know me (well, you knew me until I took my blog sabbatical), Pearlsky will always be protected.

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The mother ship has yet to arrive

It has been a while.

Several of you have written recently expressing concern, thank you.

I truly miss the blog and will make an effort to get back to it. It has been a hell of a roller coaster the last year or two.

Pearlsky “aged out” of school. I actually got her out of the high school early and into an adult program. The school district agreed to pay for the adult program (the state pays from her 22nd birthday on) until she turned 22. This was because of the “incident” and the agreement to place her basically anywhere I wanted.

After two weeks in the adult program, the best we could find, I pulled her out. It was awful.

So, yes, I have a lot to share. (A LOT)

Oh, and I have pretty much closed down my engineering business, it still exists, but on a much lower level. I have hung up a shingle as a Special Education Advocate. And you know what? I already have won some big victories.

Yeah, I think I am back. Don’t know if anyone stuck around or cares, but here goes.

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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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