Tough
I suck as a blogger recently, I get that. Yeah, a lot is going on and I really need to share more. For me, if not for you.
I recently gave a two hour talk to a graduate class at a local college, on growth attenuation. I then went back two weeks later to moderate a debate … the class was randomly assigned to “pro” and “con” growth attenuation and had a formal debate, as their midterm! I actually helped both sides, it was very interesting.
By the way, I won the debate. Â đ
Pearlsky and I went to her first gynecological appointment recently, but that is an entire post in its own right.
It appears that I have a degenerative neurological thing going on. There is a possibility it is being aggravated by the fact that I am a carrier for the metabolic disorder that Pearlsky and David have. Or not. There is puzzlement as to why it is happening and the way it is. I will have more tests in a few weeks. No, I won’t share more at this time, but it does not involve my brain, which is good, because I need all those cells I have. Worst case is not horrendous, if in fact they are right, but damn, this is tough. Scary tough.
There is a new special education coordinator at the high school. I think she is good, the rest of the place is a mess. We have interacted positively a few times. After some crap today (next item), I went into her office, she was there, and I asked for “literally 30 seconds.” She asked me to come in.
I just want to say two things. One, I hear great things about you, and honestly, from our few interactions, I think you are doing really well and will be an asset. And two, all I ask of you is that you try to learn why I fucking hate this place.
She looked at me, smiled, and said “have a seat.”
It went well.
Today’s emails …
Subject: when you mess up the easy stuff, it is even scarier
Sped Coordinator:
Last Wednesday, MC told me “Miranda (Pearlsky’s aide who rides the bus) will be out Thursday, Friday and Monday. I will ride the bus the first two days and someone else will cover Monday.”
Last Thursday, MC said “I will ride the bus again tomorrow and someone will cover on Monday.”
Last Friday, MC said “We have someone else to ride the bus on Monday.”
This morning Pearlsky sat in her coat, sweating for 25 minutes, until I got a phone call at 8:20 from MM that there was no one around to ride the bus with Pearlsky.
I rode with her.
And you wonder why it is so exceedingly scary to give you my daughter, my severely disabled, non-verbal, non-communicative daughter, to be in your care all day. With three days notice, notice TO me, you can’t even get an aide on the bus.
So now she is in school without an aide, without the lead teacher? And I left her there?
Who is the moron? Must be me.
-SD
Two hours later, MC, the lead teacher called. Here is my second email, in toto …
MC just called. The aide “forgot.”
How incredibly comforting.
-SD
Glad whatever it is does not involve your brain, and I hope you get better than the worse case scenario.
The aide “forgot”??!! If someone can forget something as crucial as a commitment of care made to a vulnerable and totally dependant person (and their family), then how on earth do they remember to get dressed before leaving the house??
Man, I am so glad my non verbal son has such great teachers and aides with him.
Your blog should be required reading for all those that think people with a disability are valued and respected as human beings. The utter lack of care and respect is shocking each and every time I read about it. The aide “forgot”. Will the aide be fired, reprimanded, receive a demerit perhaps? Disgraceful. Absolutely disgraceful.
As a special education teacher this is incredibly frightening to me and I can’t even imagine how it must feel to you and to your daughter. No wonder there is such an adversarial attitude between parents and special education.
Lisat, You really hit the nail on the head. The relationship between parents and special education people in schools is adversarial. I would venture to say one could even describe it as toxic.
We are thinking about you at our house and hoping everything turns out okay.
You don’t suck as a blogger. That’s because you don’t suck as a person. You are the Mighty Single Dad!
{virtual} hugs to you that everything goes the way you want it to for your latest “condition.”
And a chorus of “OMG!” for the aide who forgot and the school who lets her.
Hang in there! Please keep us posted on your health, SD.
It’s a bit past thanksgiving but I am thankful for your blog….makes me feel like I am not alone. And that “we” are all a bit insane when it comes to our children! I hope you and your children are well…..
SD, I think of you and Pearlsky nearly every day….. Hopefully some of those thoughts make it your way. X