Is there anyone on earth who welcomes an email from SingleDad?

Sent to Pearlsky’s Team Facilitator and the school’s Director of Special Ed. Note that a day earlier I had a discussion with the TF about how the attempts at communication have been a joke, and particularly told her this story from just about exactly a year ago. So yesterday I wrote …

Subject: Pearlsky, communication, the farce continues

Mary:

You and I just had a discussion on Pearlsky and augmented communication just yesterday. I told you that in my humble opinion, what the school district has offered all these years has been a farce. I have said at at least the last six or seven IEP meetings that switches won’t work the way they are using them and no one listens. I offer other ways of communication and again, no one listens.

Remember the main point, you cannot tell someone’s intent without a second mode of communication. She hits the switch on the right, did she intend to? Unless she tells you she did, you probably don’t know. Simple.

Here is a quote from the first page of the most recent progress report which I just got drunk enough to read.

“When presented with an activity or object Pearlsky will independently hit a switch that says “yes” to indicate that she would like more of an object or the continuation of an activity 80% of the time.”

You can ONLY know she is indicating she would like more of the object if in fact you already know that she would like more of the object. How do you rate 80% of the time not knowing what she is trying to do? Makes no sense. And if she does not want more of the object, or does not want to continue the activity, then not hitting the switch at all will be 100% accurate.

Followed by:

“Given given [sic] a simple one step direction, Pearlsky will communicate using change in affect [sic], switch, or other means to indicate her interest in following directions related to her daily activities with 80% accuracy.”

What what if she is never interested? Then she will never indicate with the switch, and hence, she will be 100% accurate if she NEVER hits the switch if you are boring her. What are you testing here? Certainly not mastery of English.

Later on …

“Given a switch attached to a computer Pearlsky will purposefully depress the switch to interact with a prefered [sic] computer program 80% of the time.”

“Preferred” by … Pearlsky? How do you know? Preferred by the tester? Again, a joke.

And you wonder why after 17 years of this I am a curmudgeon. Yet not a single effort at the types of communication I have explained have promise.

Where’s that bottle …

-SingleDad

Now, admit it, you dread an email with FROM: SingleDad in the header.

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Of Retarded Mice and Men

This post is different. This blows my mind, does involve Pearlsky a touch indirectly though. But it’s really cool. So, if you want, keep reading, hit the “Read more” button …

Read more

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Not all mushrooms are poisonous

Today Angelina Jolie told the world that she had a preventive double mastectomy. It turns out she has a certain mutation of the BRCA1 (BReast CAncer) gene that caused her doctors to say that she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. Hence the preventive removal of her breasts.

First, thank goodness she did not touch those incredible lips.

Second, I have good reason to believe that Pearlsky has a mutation of her BRCA1 and/or BRCA2 gene as well. Seriously. So, am I in a position to approve a preventive double mastectomy for her? If Ms. Jolie (I have utmost respect for her for her non-Hollywood work, it feels right to refer to her that way) can make this decision for herself, why can I not make it for Pearlsky? Ms. Jolie has yet to do any surgical intervention for her increased risk of ovarian cancer since that risk is lower than her breast cancer risk, and the surgery is “more complex.” But if Pearlsky has such a risk, why not do that surgery as well? It would probably help with her seemingly painful PMS. If we test for the gene, and it is mutated, then is it ok to do this surgery?

It may not be growth attenuation, but how far is the jump from performing self-mutilation for prevention of cancer that may or may not occur, and performing mutilation on your child for the same reason? And then you go from the reason being the possibility of cancer to being the possibility of not being cared for easily?

Just wondering.

Third, I’m a tush guy, I’ll enjoy her movies just as much.

Do not get me wrong. She made a very well informed decision, decided what was best for her, and did it. Her NY Times op-ed is very well written, thought out, and makes a very strong argument. I say the more power to her.


Why the title of this post? If you know that I sort of speak Russian … let’s just say that I confuse груди and грибы so the only time I say either one is in a restaurant when I order the chicken breasts with mushrooms.

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Reevaluate, for the first time

As every year, I received an invitation to Pearlsky’s classroom for a Cinco de Mayo lunch. They do a special family lunch a few times a year. I go. I hate going.

It is tough just walking through the high school. The hallways are always full of normal kids. I have to make my way to Pearlsky’s classroom, where all the kids are higher functioning than she is. But I go, the dutiful special-needs-special-meal-mother that I am.

I am in the room a few minutes and a woman walks up to me and asks “Are you Pearlsky’s father?” I say “yes” and offer a handshake.

I am Dr. Smith, the school psychologist and I will be doing Pearlsky’s psych reevaluation

You do realize she has never had anything like this done, right?

Yes.

Then why are you calling it a “reevaluation”?

I asked again, just got funny looks. This really is the woman I trust to psychologically evaluate Pearlsky. For what end? Who knows.


I am in line for the buffet of what appears to be Mexican food that, we are told, was made with the help of the students.

The woman on line in front of me comes up to a large bowl of tortilla chips and there does not appear to be tongs or any “proper” way to take some. She looks around, then looks at me, and asks “Do you think it’s ok to use my fingers?”

“You do realize that the kids were very intimately involved in making the salsa and everything else. Picture that. Now ask me again if I am worried about your fingers.”

She used her fingers.


While on line, I see this on the wall:

Number 3 is “One person talks at a time”

This is the largest sign in the room.

I hope and pray Pearlsky can’t read.


I smiled. I kissed Pearlsky. I got a slice of pizza on the way back to work.

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“There’s no bitch on earth like a mother frightened for her kids.” ~Stephen King

I always seem to write a Mother’s Day post. My mom hates the day, she has children that treat her right and tell her they love her all the time, we don’t celebrate her or our relationship just one day. That said, I did send flowers and “signed” everyone’s name.

A couple of times this week I got tweaked (don’t have a good word for it actually) at some things I read. A woman whom I have the utmost respect for, seriously, she has a severely disabled child, she seems to be an amazing mom and woman (it is not her fault she is a school nurse, or is it social worker?), anyway … she was looking for information and starts her post with “Hey seizure mama’s …”

Then there is the Huffington Post with 6 Secrets Special Needs Moms Know But Won’t Tell You

I do realize the reality of the situation. I know that more moms are the primary caretaker for a severely disabled child, but heck, some of us dads own that role. I also understand that many marriages are destroyed by the chasm that arises between mom and dad in both the role of childcare, the perception of the disabilities, and everything else surrounding the situation. I get that this is a gender thing (as opposed to a “sex” thing which, let’s face it, got us into this mess to begin with).

Pearlsky’s mom shows up about twice a month for maybe fifteen minutes to visit. She lives in the same town. Just who is Pearlsky’s “mom” anyway? Does one need to have both roles filled? I think so, growing up without both role models must make things more difficult later in life, no? (And don’t go all LGBT on me, I am talking more general, etc. I have no issue with same sex marriages, it is no sex marriages that I have problems with.) One parent has one opinion, one way of doing things, no one to hear them scream

Keeping the focus narrowed, if you believe in it, I wish all the mamas of the severely disabled, all the single dads (hence part mama) of the severely disabled, all my readers, a happy mother’s day.

As for me … at least one dear friend thinks I am a mother … these arrived earlier today with the note “For a dad who is a wonderful mom” …

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