Go ahead, tell me a sad story.

My surrogate son …

I am a Special Education Advocate. Not sure why that is all capitalized, but it makes me look better. I have been doing this for a while. I enjoy it, and if I may say so myself, I am pretty good at it. Just look at the real testimonials on my web site (but alas, I am anonymous here, so trust me). If you need help with your school district, let me know. I have dealt with cases in many parts of the country, and won some big issues here.

I am also a “Special Education Surrogate Parent” and this is something needed in every state. Basically I act as a parent in all the ways necessary concerning a student’s education since that student’s parents have lost parental rights. The student is usually in a residential facility or a lock-up or a ward, not in a foster home because foster homes have foster parents. This is one step “below” (?) that. (More surrogate parents are needed in every state, look into it!)

So I get an assignment and, with minimal information, I say “yes.” Then I get a call from the home school district’s out-of-district coordinator.

“Of course,” I say, “I absolutely do want to hear his story. Even if it is the saddest story you have heard in your fifteen years of doing this.”

Steven was seven when his mom found out that her husband was not Steven’s biological father. She ended up killing herself. “Stepdad” then spent two years abusing the boy who was not his son. When somehow “biodad” came into the picture, he took custody of Steven and helped to put stepdad in jail where he is to this day. Biodad was able to get parental rights, but stepdad was on the birth certificate causing problems to this day. Biodad’s family included a couple of young girls, and, well, things did not go well. Steven was also showing many sexualized behaviors; he went into a residential facility and after a while biodad lost parental rights. Public school did not work well because of said behaviors so now Steven is in the residence full-time, getting his education there as well.

I do not know more, so don’t ask. I have not seen incident reports, etc. It has been hinted at that the behaviors are not aggressive towards others. It is up to me if I want to meet him; I feel strongly I should. After all, I am advocating for his education, school therapies, etc. I am the one to sign off, as a parent. I need to meet with him. In my advocacy I always do when possible. I am told that I will be meeting a “very flamboyant, with all the stereotypical presentation, young man.”

I don’t think this is the saddest story I have heard. My own story (with Pearlsky and David of course) is not all that uplifting. But this one is tough. This kid has no one.

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Period – not just for grammarians anymore

The appointment with the gynecologist went well, she did not feel there was a reason for a physical exam. I put my pants back on.

Pearlsky had close to a dozen years of pretty much spot on exactly 28-day cycles and four day periods. Then a few months ago that went out the window, hence the appointment. She had not had a period in a while but apparently had PMS. We discussed various things, including how to mitigate the PMS, how her meds could cause the irregularity, etc. I was asked about dates of her periods, and yes, I track them. But who knew the doctor would also want to know the length, how heavy, etc. I got a B- in data collection.

There’s an app for that.

Yes, that is what the doctor said. Actually, many apps for that. So I went to my only social media thing, where luckily I have about 92 female “friends” and two or three male, and I put out the word … anyone have a good app for tracking periods (not the grammatical kind)?

Some apps were too pink and flowery (hey, I’m a guy, ya know), a religious one was good, but just not exactly right, another wanted my BBT, and well, come on, that’s a bit personal, no? (For you guys out there – ok, Ken – that is basal body temperature, a way to calculate when you one she a woman is fertile).

I put a period tracker app on my phone, Clue. No clue why it is called “Clue” … maybe to give you a clue? It is from Germany, no way I am looking up what “clue” means in German.

Of course this morning Perlsky wakes up and I find she has her period! I grab my phone …

I open the app, hit the calendar icon and have six big buttons. “Period” … ok, should probably tap that. “Light,” “Medium,” “Heavy,” or “Spotting.” Ummmm … compared to what? My period? Do women compare? How? Do I ask my friends how many diapers they bleed through in a given time frame to figure this one out? I really did start to wonder how women determine this. Anyway, relative to the last few years, I chose “Light.” Then there is the button labeled “Pain.” “Cramps,” “Headache,” “Ovulation,” “Tender Breasts.” Ugh. No clue, I closed that window. Then I hit the button labeled “Sex.” Was not sure if it meant mine or hers … but then the choices were “Unprotected,” “Protected,” “High Sex Drive,” and “Withdrawal.” I love the euphemism “high sex drive” … not sure what it is for though. Multiple partners? Multiple O’s? Making out at 1000 foot elevation on Look-Out Point Drive? At this point I wanted to Withdraw … I just skipped the options for “Mood,” “Fluid,” and “Tags.”

I will track everyday there is blood. And note things like “torrent,” “trickle,” and “war zone.”

How will I explain the alert that will pop up in 14 days that says “Your high fertility window starts tomorrow”? Hope I am not at lunch with mom …

Do all dads do this for their 22 year-old daughters?

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“Let us not burthen our remembrance with a heaviness that’s gone.”
~William Shakespeare, The Tempest

Email sent today to gynecologist … I have known her since before Pearlsky was in utero … Pearlsky saw her once three years ago or so, no physical exam at that point … going in three days.

I was thinking about our appointment this Friday and cannot remember exactly the timing of the last appointment. There is something about Pearlsky you should know and I cannot talk about it in front of her.

There was an incident at school with her the summer of 2013 which is very difficult to discuss and I know that the mere references to it the first 6 months or so in front of Pearlsky upset her very much. As to her memory of it at this point, I have no idea. It involved her minimally, being touched (no evidence that she was actually penetrated), in or around her genitals, and more. It was fully reported, investigated, etc. (DDS, AG, and more). I tell you this because I am not sure how she will react to an internal exam. I actually have an excellent, incredible rapport with her (hard to understand that when you look at her, but we do), and I do not expect any issues when you examine her. Additionally, if in fact she has issues, either physical (as a male, I have no clue if these exams hurt, I know (or am told) they are “not fun”) or mental, I have many ways to deal with that easily.

Please do not hesitate to do whatever we need to do, there is no issue there. I just want you aware that she may not react as one would expect. I am generally very in tune to what she is experiencing and will let you know, I just may be a tad cryptic. She does get urinary catheters every so often (she is prone to UTI’s) and deals with that fairly well.

The incident itself is discussed in an interview if you are interested … I have a fairly well known internet/blog persona as you will see.

http://conversationlibrary.org/project/single-dad/ (third video)

I don’t think there will be any issue, and quite frankly, you are the only person I trust in this regard, I would not take her to anyone else.

If we are still you patients, we will see you Friday. 😉

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“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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