“Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” ~Isaac Asimov

Let’s face it, transitions suck. And I thought we were done.

I guess there is a reason they call it “Children’s” hospital. Yes, we are aged out. Well, kind of.

Pearlsky’s doctors are letting us know that the time has come to transition (there’s that word again) to the adult medical care in the area. Some of the doctors do have patients into their 30’s, but in general, once a patient enters his or her 20’s, it is time to move on.

In some cases we have been with these doctors for 22 years. Two of them have known Pearlsky all her life. The shortest relationship is probably 10 years. And I know you won’t believe this, but really, Single Dad is picky about doctors. Yep, really. I have smiled, and wheeled Pearlsky out of doctor appointments after a few minutes. All of her doctors are hand picked by either me, or other doctors who know Pearlsky (ok, who know her dad) and came highly recommended (and prepared). These are incredible doctors, incredible people who we get along with fantastically. Who have seen Pearlsky nearly dead, seen her dad at his worst, who have been there for us. Doctor’s who were in on the diagnosis of a metabolic disorder never before described.

And now they are kicking us to the street. Ok, no, they are not. It is simple abandonment. Well, no.

We are looking for new doctors over the next year. They have recommended a woman doctor in an affiliated hospital who “gets it” and would be a good match. We will check her out, she is an internist and we will need a small team in addition. I think we can get away with an internist, neurologist, GI, and a gynocologist. If you remember, we do have a fantastic GYN, we went once and need to make another appointment now.

This is harder than I thought. Do transitions ever end?

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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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