I don’t remember dying, but I woke up in hell (** UPDATED! **)
Earlier this weekend, the love of my life did the one thing, the only thing, that I cannot tolerate, knowingly. Ouch.
Then life continued to get worse. See, you can go downhill from downhill; there is always a deeper hole.
In case you feared that Single Dad’s posts were getting boring or fewer, never fear. Summer camp has started!
The bus pulls up to the house, I have been told it would be the totally fantastic school year driver, and it was. I was also told that the same 1:1 aide would be with Pearlsky this summer … and it was not. Someone I never met. One piece of background information … the school district head of nursing is a complete puke who has determined that the nurses are not allowed to give Pearlsky her amino acid. The one thing that keeps her alive and stops seizures. She gets it at the same time as the nurse gives other meds (which ONLY the nurse can give). Don’t ask why, no one understands it. So, back to the unknown aide …
You know about her amino acid?
Not at all, what is it?
It is what keeps her alive.
So I call the school, no nurses can come to the phone. I speak to the head of the camp program, he has no clue. I explain, in only the way that Single Dad can, that the choice is in his hands, Pearlsky comes home on the bus, or in an ambulance. Turns out he is a quick learner.
It was before this blog that we had transportation nightmares for years. That is one of the reasons I write so strongly about the tie downs and transportation issues, things were really bad. For the last three years or so, the driver has been incredibly fantastic. If I was 15 years older, a different race and a different gender, I’d ask him to marry me.
As you can imagine, the head of transportation for the district knows me. We actually get along quite well. Since there are many field trips during the summer camp, and they hired a different company to take the group, she asked me to meet at the school this morning for a “dry run” with the new driver. He has lots of experience with wheelchairs, I am told, so it should be easy.
Quick show of hands … who thinks it went “easy” ???
The driver shows up with a rather large yellow bus. There is a ramp at the back, on the side. He cannot get it to work … takes at least five minutes, it finally works. He gets her in the bus, so far, so good. Puts her in the right position, so far, so good. He finds the right places to attach the tie downs on the chair, so far, so good. He attaches two tie downs to the front of the chair … one is actually a rear tie down, one is a front tie down. So much for the so good. He ties one tie down in the back … and can’t find the other. Searches the bus. He has only three tie downs. At least he knows he needs four. The rear tie downs that he uses (one erroneously on the front and one in the rear) are actually threaded wrong within the mechanism. He claims to do that on purpose and I show him that the device does not have an emergency release. He says he knows how to release it.
So when you crash the bus and you are lying there in your own pool of blood, the bus is on fire, you will get up and teach the paramedics and the cops your special method of releasing my daughter?
Yes, I said that. I then asked if he was done strapping her in, he said he was. I asked him where the lap strap and shoulder strap were, he did not know, nor did he know how to use them. I reached over to the box on the floor of the bus near the wheelchair and picked up … wait for it … INSTRUCTIONS! Yes, I am an engineer and occasionally even I read them. The instructions to the tie downs, right there. I open them up and read aloud … but first I ask …
Does anyone know what the word “caution” means?
They look at me.
It says here, under caution, Do not operate the vehicle unless the wheelchair occupant is secured with both the lap and shoulder belts.
And they pay this guy! They pay this company. I made it clear that my daughter will not be transported like that. And I am making it clear that if they violate the IEP by denying her trips, well, that will be dealt with, which brings me to the next post … coming soon to a rant room near you.
Just when you think it can’t get any worse. Here are two emails I just sent. Really.
First, to the guy running the summer program at the high school. You already know the first part, but not the second:
Several things from this end concerning Pearlsky’s first day at camp.
We discussed the fact that no one seemed to know about the extraordinarily important amino acid that Pearlsky must have twice during the school day. How did that happen?
MM may have told you, we did a dry run with the driver for the field trips. The driver knew this was going to happen. In summary, he did not have the proper number of tie downs, he used the tie downs erroneously, the tie downs themselves were not attached properly (yes, those are two different issues), he did not know he needed a seat belt for my daughter, he did not know he needed a shoulder belt for her. In other words, total and complete failure, and a potential danger to my daughter.
When I met the bus after camp, the nurse told me there was some concern as to Pearlsky’s hydration. I asked about the Pediasure and who fed her. I was told that the substitute aide “tried” to feed her. It is my understanding that this woman has NEVER seen Pearlsky before. Note that it take me a minimum of three days to teach a Personal Care Attendant to feed her. I was also told that no one else fed her. So, if I get this right, someone with NO training tried and failed to get liquids into Pearlsky, the temperature hit 100 today according to the news, and the nurse is wondering why she looked pale? What am I missing?
When she came home, she quickly drank 32 ounces, 16 ounces of Pediasure and 16 ounces of water.
I am sure you are aware that I work, and live, within a half mile of the school. I wasn’t called … why?
Then I get my son’s progress report from the very expensive, big deal residential program where he lives. Every year they decide to take my name off the records, I send multiple emails, they apologize and quasi fix it. Here is one instance. Well, it happened again today. Think I’m having a bad day? So, here is the second email:
Subject: If not “gross incompetence,” then what?
Once again it appears I have been removed from your system as my son’s father. We have been down this road many times, and you have repeatedly assured me that it won’t happen again.
Obviously you have no control of this or are unable to. Which is it? Is it not your responsibility or are you not able to do the job?
I RESENT THIS, I AM OFFENDED.
Under a cover letter by Mr. C, who should care that his name is on this fiasco, I received my son’s Progress Report. Under the key word “PARENTS” is only his mother. Yet again, I would like to point out that … 1) “PARENTS” is plural 2) I am his father 3) a father IS a parent. I can send a dictionary if you like.
Furthermore, as has been documented several times, the report is sent to someone at the school district who has not worked there for a long time.
Your laughable fix last time was to print out two versions, one with his mother’s name, one with mine. That is actually an infantile solution, a patch to shut me up. Anyone that picks up a single report should see BOTH PARENTS, because “PARENTS” is plural, plural means more than one. What do you need to see for me to prove I am also his parent?
If you are not capable of filling in the proper number of “PARENTS,” why don’t you change the key word to “PARENT” or “PREFERRED PARENT.”
I RESENT THIS. IT IS OFFENSIVE.
Please pass this email on to someone who cares.
It must be me. I know.
This is so upsetting. The guy has one job: to make sure that Pearlsky is safely transported to her destination, nothing more nothing less. There is really no excuse for this incompetency. For crying out loud.
I like the idea of a rant room. Can I have one?
Now that is true SingleDad! Cr@p. That is true school district transportation. I have seen similar many times, all 4 states in which I worked. Requires constant vigilance, eh?
You know, you could have a nice little business writing emails for other people who don’t do outrage and umbrage well. And you could work from home.
Never in my life have a seen one man surrounded by so much idiocy.
Based on the experience of my mom, who is chronically ill, the issue is that there’s a certain amount (let’s call it X) of idiocy in health-care systems, and the more chronic your need for help from that system, the more of X you will witness. Also, the more time and motivation you will have to complain about X.
People whose needs for help are acute, not chronic, might witness some idiocy, but either not realize how big X really is, or “let it go” because once their problem is resolved, they don’t feel a need to invest any emotional energy in fixing it.
I have to agree with Sarah – Having fallen into the acute category a few times, then seeing what my fiance’s family went through with a long term fight with a terminal brain tumor in his sister. We on the “Acute” side see a lot of idiocy in isolated incidents… Start stringing those incidents out and you see a horrifying pattern.
I do not have a special needs child, and I will never pretend to understand what it is Single Dad, Ken, and Marissa’s Dad go through. That being said, I think of an old Irish blessing:
“May the road rise to meet you,
May the wind be always at your back.
May the sun shine warm upon your face,
The rains fall soft upon your fields.”
Here’s hoping all the special needs parents some smooth sailing for a while and someday a fix for all the recurring frustrations that the rest of the world will never fully understand.
My compliments to Sarah for stating the relative ratio of known idiocy.
I used to travel a lot via airlines. At airports I had to take a bus to the car renal locations. Most buses had a working wheelchair lift or ramp. Great. No buses had a driver that could use the tie downs. Luckily I could transfer out of my wheelchair onto a bus seat. This is not a solution for all people. I complained all the time and not once did I see a change or come across a driver that could use tie downs.
And people wonder why I am not prepared to travel on a public bus without any kind of tiedown or belt at all. Yes, because the ~175kg combined weight of my specialised powerchair and me will be more than adequately restrained by hope and fairy dust each time the bus brakes or turns… let alone if it were to crash. I think not.
Does anyone know what the word “caution” means?
With all due respect, that’s just incredibly rude. Yes, I know, you hate “idiots” etc etc. How would you feel if someone spoke to one of your loved ones in that manner? It would cause me a great deal of distress and would an involve an equally great deal of restraint not to react to your comments. There is a difference between advocating for your daughter and verbally abusing people. This would be considered verbal abuse.
I always appreciate your reading, and your comments, but on this one, we disagree. If I had personally attacked him, after all he was incompetent at his job, he was unprepared for what he knew was going to happen, he had not read the cautions or not followed them, there were many words and “names” I could have called him. I was actually looking at the woman from the school district who was overseeing the debacle when I said those words, but yes, they were directed to all. Was it rude? I think marginally. Was this man totally and completely unprepared, untrained, and improper to transport anyone in a wheelchair, yes.
How would I feel if someone spoke to one of my loved ones in that manner? Depends. If it was deserved, or if it was in front of me, or many other factors. I own two companies, I spent years as a college professor, I have had customers (and students) say worse to me at times, about me or about my employees (20 years in business, it happens). I listen, determine if there is any truth in it, deal with those truths and consider the source. If the source is a father irate at the thought that his daughter will be endangered, I would consider that. When it was a student expelled for cheating during an exam, I considered that.
As for you and your comments … please, keep them up. Seriously. Someone needs to keep me in line.
I’m glad you weren’t insulted by my comments, truly. It definitely wasn’t my intent to be hurtful. Your response was very gracious.