I hugged a goddess

I’ve mentioned the pharmacist goddess, Roxanne, in past posts. She is one of the very few who read my blog, know me, and live near us. Turns out that this morning, as I was going to the supermarket, I was thinking to myself how there was no way I could write the post I want to. I often get the feeling that no one would believe me, or that I sound like a dork, a whiner, or something. Could all this stuff really be true? Really happen to one guy and his kid?

As I pulled into the supermarket, who do I see? The pharma-goddess and her hubby, Mr. Pharma-goddess. I park and get a hug! A hug from a wonderful woman with drugs! Go beat that.

She tells me she reads this blog often and can’t believe that I still function … she is having a very difficult time just finding and scheduling movers! (yes, I am losing my drug connection …) We laugh over all the stuff that happens around me and Pearlsky, and she compliments me on surviving with a smile.

I know that sometimes I may cause or aggravate a situation, but that is by far not the norm. I know that I react strongly to somethings others would let go past. I have a very strong sense that what is done for / to / with Pearlsky must meet the level of that for any “normal” person, and that, at least with the school district, she is a pioneer and I want it to be right for those following us. Maybe there is some totally misplaced guilt and I want only the best for her. Whatever it is, a lot is just thrust upon (dumped on) us, and we deal.

Ninety percent of the time I like life. I have great friends, relatives, one and a half successful companies, respect of others, food on the table (Pediasure, hot dogs and coffee count, right?), and my health.

So, I will do this post, it is all true. Just a typical week in the life of Single Dad. Some good, some bad, some ugly.

Monday

I leave first thing to go see my son, discussed here. I am told that they are having a very difficult time getting a “growth kit” for his wheelchair! They are blaming the DME that I have had all the wheelchair nightmares with. During the meeting I text the Chief Operating Officer of the DME company, I happen to know she is on a working vacation in the middle of nowhere, and ask her to find out where my son’s wheelchair parts are.

I have been unable to get anyone to care that the town made the street in front of my house inaccessible, remember the bottom of this post? They tore up the sidewalk, remade it to meet ADA requirements, and then planted trees bushes that made it impassable. So, after seeing my son, I called the “Parks and Open Spaces” people who are ultimately responsible for the trees in town, and got on the phone with Ms. I-Run-The-Place herself! Cool. She cared and will meet me to see.

Tuesday

First thing in the morning I notice that Pearlsky’s legs and hips are getting tighter everyday. Then I forget about it.

I went to an appointment with my spine doctor. I asked at what point do I assume that I will be limping, usually late in the day, for the rest of my life. He says it can take up to two years to completely heal (good chance the LHC will cause a black hole and all live as we know it will cease to exist before that).

I get an email from Ms. COO of the DME about my son’s wheelchair parts.

It was shipped directly to his school and signed for on 6/4.

That is 39 days before! No, I am not a savant, just a geek (great date calculator). So I send an email to the school suggesting they, well, get their act together.

We end with a bedtime seizure. I bet you just read to your kid.

Wednesday

Hmmm, Pearlsky seems tight. Something’s up. (Cue up foreboding music)

I get a call from Ms. I-Run-The-Place in the town. We are meeting in 15 minutes at the sidewalk. She tells me she is driving a Towncar. Cool, I used to have one, a lover of big, comfortable cars, loved my Towncar and my Park Avenue. I go and this little black electric car pulls up. Damn, she is in a “town car,” it even has the town’s emblem on the side. Turns out she is smart, caring, experienced, (and a gorgeous statuesque blonde, not that I noticed). She throws around all this tree jargon, checks out the situation, and you know what? She agrees there is a problem and tells me I will hear from her next week. She was even interested in the problems with the poorly installed, improperly chosen, truncated domes! No more making fun of tree huggers, I tell you.

Just past noon the air conditioning in my office craps out. We close shop when it hits 88 degrees (31 C).

My bestest guy friend in the world, one of those friends who is like a sibling, always, no matter what, calls. He is unexpectedly in town! We meet for about an hour and a half. Wonderful. Simply wonderful. He’s the guy that when, 30 years ago, we were landing in Delhi (yes, India, the first time I was out of the country) he turned to me and said, “Don’t walk on the grass.” “Why?” I asked, like the idiot I am. “Cobras.” He was right, we saw many.

I get a call from a social worker at the hospital. To explain how it went, I will share the email to the Patient Relations woman at the hospital. She is wonderful, knows me and Pearlsky, likes us (or fakes it well), and wants to know how things go.

Subject: from your friend, the curmudgeon

I hope all is well. Here I go whining again …

I got a call from a social worker, L, about the guardianship for Pearlsky. She expresses concern that I am doing this early and there is a 180 day window, mentions Pearlsky’s birthday, etc. I ask her what she is talking about and it turns out she believes I cannot do anything with the papers until after Pearlsky turns 18. This not only does not make sense, it is wrong (according to multiple lawyers at the courthouse itself, as well as common sense). Then we go to make an appointment and I ask how long it will be. She says just two or three minutes, she just needs to physically see Pearlsky. I asked if there was any other way or other place, even outside the hospital while we are in the van, she said no. It is disheartening that I need to get Pearlsky in her chair, in the van, fight traffic, park, get her out of the van, get her to the clinic, wait, have the woman look at us for two minutes (her words), pay for parking, get back in the van, fight traffic and go home. (Told you in the subject line that I was being a curmudgeon).

We end the day with a well deserved haircut … no, that’s not me (neither one).

Thursday

I get an email from my son’s school. It appears the wheelchair parts were sent to him (my son) instead of the PT and they cannot find them. I gently explain, as only Single Dad can, that if they were sent to him, they better be in his room. Isn’t it a federal law to steal stuff sent to someone? They get the idea that they should look harder.

Pearlsky is still tight. I send the following, simple email to the teacher and her aide:

What days does Pearlsky get her PT and OT?

Simple email.

Friday

We made it to Friday! Yes, all is well in the world. I get an email from my son’s school, “We found the parts.” Well, I am so proud of you … over a half a million dollars a year, and it takes you 42 days to get a box from your receiving to your PT. Why does it take me contacting the DME?

The air condition craps out again at the office. I leave when it hits 91 degrees (33 C).

At the end of the day I get an email from the teacher in the summer program.

This spring I contacted the OT, who informed me that Pearlsky does not have summer OT services as part of her current or draft IEP. The PT who works with Pearlsky, does not have her listed for summer services either. Please let me know if you have any further questions.

Further questions? She is on the same IEP as last summer, and the school district paid to have an outside OT and PT see Pearlsky. This is total crap malarkey. Seeing that it is almost sundown, I figure I will write the email response over the weekend. Further questions my ass tush, yeah, I have questions.

Mom calls around 8 o’clock in the evening. Very unusual time, in the midst of my festive Friday meal.

I want to call you in case you try to find me, and you should know what is going on. I am getting an emergency ultrasound tomorrow morning at 7, there is a small possibility I have a blood clot in my leg, but don’t worry. If I do, they will admit me immediately, and I don’t know who will care for your father since he absolutely cannot care for himself anymore, he won’t know to take his meds, etc. So I am calling to tell you not to worry.

Thanks, mom.

I spend Friday evening packing up Pearlsky and getting ready to leave at a moment’s notice, if needed.

Saturday

Mom calls at seven thirty in the morning. All is ok, it’s just an infection, etc. but they are on their way home. I can unpack.

Time to deal with the fact that Pearlsky’s IEP is being violated and I have no idea who runs the program.

Here is the email sent to everyone. Literally. Didn’t you get your copy?

I currently have no idea who is in charge of the summer program nor who is working or on vacation. I implore anyone to respond to this email, please do not assume that others will.

As seen in the email below, there has been an intentional decision to violate Pearlsky’s IEP and discontinue her PT and OT services. Please note that she is currently under the identical IEP as last summer when JI contracted with Easter Seals to provide those services (for the second summer in a row). Also note that Pearlsky has never had a summer gap in her therapies since she started in the school district about 15 years ago.

Pearlsky is being negatively physically effected by the lapse. The way I realized that the services were removed was by noticing her increased tone, increasing daily.

I have no choice but to advocate that Pearlsky’s rights are respected and her therapies are continued immediately.

I request an immediate resumption of Pearlsky’s therapies.

I am told that JI is no longer the responsible party (but this may be erroneous or a rumor). Pearlsky’s summer “teacher” has told me he does not believe the therapies are mandated (see email below). I do not know if DR is available or responsible, so as far as who to contact in the district, I am at a loss.

Because Pearlsky is showing adverse physical effects of no PT or OT therapy for approximately five weeks (includes a couple from the typical inter-session break), I have no other option than to request an immediate IEP team meeting to address the issue. If this cannot be done immediately, I will implement Pearlsky’s rights under the State Education Laws and Regulations, 123 XXX 28.08 and contact the Program Quality Department at the DOE with a written complaint as well as the Department of Special Education Appeals as it appears that three members of Pearlsky’s IEP team are involved in this elimination of services.

Again, under the same IEP, the last two summers the district contracted with Easter Seals for said therapies. She has had the therapies every summer. Why were they cancelled this summer?

It is purely because Pearlsky is being physically affected that I believe immediate action is necessary.

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I did have some incredible dreams concerning the goddess Aphrodite, but alas, I have a different web site for such stories …