I failed my son

I went to my son’s IEP today, he has 16 months left of school. The drive to his residential facility is about two hours, it makes for a long day. A long, horrible day.

The law says that every child with a disability is to be educated as much as possible with their non-disabled peers. This is one of the basic ideas of special education. It is part of the IDEA. It is in the definition of FAPE (Free Appropriate Public Education) and LRE (Least Restrictive Environment).

David has been at this facility for about eight years. It is pretty much the “most” restrictive environment he can be in. There are no non-disabled students. There are no somewhat-disabled students. There are no sort-of-disabled students. There are only severely disabled students.

We already knew that Pearlsky was pretty messed up by the time David came along. I thought “maybe there will be somebody to take care of Pearlsky when I’m gone.” Wrong.

All those hopes for a “normal” child. A son! We will get it right this time. The holy one, blessed be He can’t be that much of a dick, can he?

It hurts visiting David. Seeing him is tough. He has a booming voice, my nose (pre-nose job), and apparently my sense of humor. At one point in the meeting I made a self-depreciating remark, the only other male in the room (David’s PT of eight years) joined in on the joke, and David burst out laughing. Perfect, appropriate timing. But don’t get me wrong, he is severely disabled, non-mobile, no communication, etc. It just fucking hurts.

I brought two in the world for the selfish reason that I wanted to have children. I stopped asking “why me?” many years ago. I do ask “why them?”

I think his quality of life, from his point of view, is good. I hope so. I hope and pray he does not know how disabled he is. But I do. And it hurts like a bitch.

But I would never admit that.

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When the teacher is the bully …

New client, first meeting I attended as the advocate. I always follow up a meeting with an email with the key points, especially anything we want in writing, after all, “If it is not in writing, it wasn’t said.”

Here is a key excerpt from the meeting email this week …

Nancy has an Individualized Education Program because of her diagnoses of ADHD, Anxiety Disorder, and a Specific Learning Disability in reading.

Nancy has been repeatedly subjected to punishments that consist of public humiliation, potential physical harm, infringement of her rights, disruption of her education process and denial of her FAPE. The punishments are for actions of hers that are directly caused by her disability, specifically manifestations of her ADHD. When Nancy is seemingly not paying attention in science class, Mrs. A takes Nancy’s stick away in front of the other students and puts it in the jar assuring that Nancy will not be getting a prize at the end of the day.

Key symptoms of ADHD, according to the NIH, include and are not limited to: not seeming to listen when spoken to; daydream; easily distracted; have difficulty focusing on one thing,become bored with a task after only a few minutes; have difficulty … completing a task or learning something new (here is link to NIH).

Her punishment for this manifestation, the (putting of her stick in the warning jar) serves to only aggravate her anxiety disorder causing her further difficulties in focusing, hence denying her FAPE for the rest of the day. Additionally, because Nancy’s mother failed to sign Nancy’s agenda, she was subjected to a different punishment. At the meeting it was pointed out that in fact Nancy’s mother was the one who “failed,” but Mrs. A claimed the punishment was due to Nancy failing to remind her mother.

Note that another documented symptom of ADHD is “Have trouble completing or turning in homework assignments” (ibid.).

Nancy was offered the choice of sitting out of recess or doing multiple laps around the playground. The “What to Expect” document, as well as the Student Handbook, both show that recess is a right, not a privilege. It is inappropriate to take away a student’s rights. Having a student publicly humiliated by stressful physical exercise is not only archaic, but infringes on her rights. Furthermore, it denies her FAPE by removing her from the student population and escalating her anxiety, thus destroying her ability to learn for the day; all because of an action (or lack thereof) by her mother. Offering a student with multiple disabilities a no-win choice of punishments is an attempt to blame that student for the punishment enacted. Please note that the actions have the same effect on Nancy as directly outlined in the district’s own bullying policy, i.e., “public humiliation, potential physical harm, infringe on her rights.” It is our understanding that, effective immediately, Nancy will no longer be subject to such punishments when they are due directly or indirectly to her acknowledged, documented disability.

And now a public service announcement … bullying of any form does not “just go away.” And if properly reported, it won’t get worse. I know about it from many points of view. Do not ignore bullying.

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Blessed is the True Judge

When we hear of a death, we try to affirm that the holy One, blessed be He, knows what He is doing. Hence we say “Blessed is the True Judge.” Being the heathen I am, I say it anyway. Even though He may be a She, and either way, S/He may not know what He or She is doing.

We lost a member of our community recently. I often refer to “our” community, those who are severely disabled, and in this case it is even closer, a reader, an internet friend, someone whose parents I admire.

Aria, the youngest daughter of Rachael (Socially Inappropriate Mom) and Kevin passed away this past week while at home under hospice. There was a celebration of her life yesterday. I know that Rachael has not updated her blog in a while, hopefully she will soon; I am sure she has much to share.

On December 23, 2010 I got an email from Aria’s father, Kevin, before the birth, and I reached out to my readers on his behalf. See that post here, worth reading, it is short! Basically he was asking what to expect, knowing that his daughter would be born with severe disabilities.

Many readers responded to me privately, several responded on the blog. The general consensus among the private, to-me-only emails was “tell him to run like hell.” Some questioned why they were continuing with the pregnancy (not a question I would ask, at least not out loud). Others had no idea what to tell him. And several wrote public comments on the blog, as I did.

I got to know them a bit via the blogs, the evil Facebook, and a few emails. Rachael became the only social worker on this planet that I have great respect for. She became a powerful advocate not only for Aria but for others with the same disorder (Fanconi Anemia). People say to some of us “I could never do what you do” … and my answer is typically “most of us rise to the occasion. You don’t know what you can do until you need to.” Rachael rose to the occasion. During this ride they discovered that Daisy, their older daughter, has some challenges herself (not even close Aria’s issues, but challenges nonetheless).

I do not know how Kevin ended up dealing with the situation; at least from my view, he was not as public. The bits I have seen, show him right in there with the girls, being the dad he needed to be. Rachael did not do this alone. I will absolutely be inviting Kevin to write to us at some point and give advice to the next parent that reaches out. I would love to hear what he has to say.

Aria and Daisy have had multiple trips to Disney (a place in which SingleDad has never stepped), a special sensory room in the home, all the services that the government and community have to offer (where some of that advocacy came in), and as normal a life as possible in such a situation. Kudos to Rachael and Kevin. I could never do what they have done.

May Aria rest in peace. Somehow we must believe that Blessed is the True Judge.


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Of quotes and wheelchairs

If you can’t do your job, why is someone paying you?

Actual phone conversation with a pharmacy technician from CVS, really …

We only got in a partial amount of Pearlsky’s Pediasure. Would you like to pick it up or wait for us to get the rest?

How much did you get?

Ten cases.

You do know she only gets seven and a half cases, right?

Yes, and we have ten. Would you like the partial?

Now at this point I was incredulous, he was serious.

Do you realize that 7 1/2 is less than 10?

Hold on.

Are you checking if 7 1/2 is less than 10?

Please hold. (holding) When would you like to pick it up?

The next day I got a call from some homecare group that will be getting me a new CPAP (don’t ask, doesn’t matter). Brittany calls (or so she identifies herself) (after reading this you will agree she must dot that “i” with a heart). Again, I give you my word, these are quotes.

I need to make sure we have the right information. Is your birthday still October 22, 1958?

No, I moved it to the spring.

Go ahead, now guess, did the conversation go uphill or downhill from there?

Just over five years ago we got Pearlsky a new wheelchair. It was a nightmare, if you remember, and the first two they delivered I rejected. You can read all about that here (or ALL about it here). Finally the third was hand delivered by one of the manufacturer’s important people. That chair is now showing its age.

Remember there are two companies involved. The manufacturer (Sunrise Medical) who makes most of the chairs our kids are in. Then there is the DME (durable medical equipment) that we interface with, basically the distributor. I have tried in the past not to name them directly, but finally did. I use one of the largest, National Seating and Mobility (NSM). Once the chair is purchased, you are forced to stay with the same DME for the life of the chair since no other DME will talk to you.

In May of this year (five years out) I call the DME and tell them that Pearlsky’s chair needs new wheels, new lateral covers, new cables and most importantly, a new seat. The gel cushion has lost all its gel and it is very uncomfortable and can cannot be removed. A technician comes a few days later, agrees with everything, takes information, serial numbers, etc. and leaves. THREE MONTHS later, he returns with all the parts. Sort of. The wheels are right. The cables are right. The covers are wrong. And the most important part, the seat cushion and gel are wrong. I explain the discomfort Pearlsky is in, he leaves saying he will get the right parts.

Three weeks later, nothing. I go looking for an old post of mine and find it. Take a quick look. I leave messages for Karen, she calls back. She promises to look into the situation and help. At this point, I decide NOT to blog about it, if Karen fixes it, great. (Since you are reading a blog post about this, can you figure out the punch line?)

Several days later I hear from the local manager. He makes claims about prescriptions they needed and I had him fax them to me. They are time stamped when they went for the doctor for signature and when they were returned to NSM. Then I need to send this email:


I am livid at what the manager just did on the phone.

The manager said the tech was at my house 8/18 (three months after my first call), saw he had the wrong cushion, got a quote for the right cushion on 8/18 and sent a request for prior approval to the insurance for the right cushion on 9/9, 22 days later.

I asked why that delay. He said a new prescription was needed, even though the original prescription worked and had not been filled correctly. He said the prescription need to be exact to the part, proven a “misleading statement” when he sent me the two prescriptions (and neither have part numbers nor real descriptions). I asked why they did not just return the wrong cushion and get the right one? He could not give an honest answer.

NOTE: The request to the doctor for a second prescription was made on 9/9 and was returned to NSM two hours later. THE ONLY HOLD UP ON THE DOCTOR’S END WAS 2 HOURS. Documented on YOUR fax.

What happened between 8/18 and 9/9? Three weeks?

Pearlsky is now sitting on a very uncomfortable seat, got some sores a week ago that she has never had, and we are waiting since May.

I will go drink heavily and wait to hear.


Over the next few days there were emails that I was copied on between the manager at NSM and the Product Manager at Sunrise Medical. I had to be the one to suggest they drop ship the seat to me (as opposed to sending it to NSM who would then bring to me sometime later.) They sent it.

We got a new seat and gel cushion yesterday, Friday. “A” new one. Not “the” new one we need. This one does not fit her wheelchair. It is useless.

Since May. We are at the end of September. So I decided it is time to post.

  1. Do you really want to use National Seating and Mobility as your DME?
  2. Why would it be important that your kid spends 100% of her awake time decidedly uncomfortable, if not in pain? Crying at times is alleviated by changing her position on the seat.

In this post I mention that a gentleman from Sunrise Medical hand delivered the chair Pearlsky has now, back in April 2010. Last evening, after opening the shipment and finding the seat does not fit, I looked him up on LinkedIn. Yes, he is still with Sunrise Medical. And now he is a vice president.

I hope you remember Pearlsky and me. You came to the house to deliver Pearlsky’s chair back in April of 2010.

I really need your help again. And it is a personal plea, Pearlsky is suffering physically because of issues with her chair, and neither people at NSM nor SunMed are able to help with a simple fix.

I know you have children. Mine is in pain.

I hope you are still with the company. I remember your empathy and being a great guy.

Please contact me anytime, 24/7.


Let’s see if he responds.

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Dumpster Diving Dad

Nothing like an emergency run to the Big City Children’s Hospital emergency room.

I am sitting having coffee out with my BFF and the nanny calls. One of Pearlsky’s best.

I can’t get Pearlsky to stop crying. I gave her Advil and then she needed some Valium. There is something very wrong.

I saw her about two hours ago, but if this nanny called, there was something wrong.

(Needed background: During my hiatus from blogging, about nine months ago, Pearlsky was in the ER. She had both a UTI and cellulitis around her eye. The ER experience was so horrendous, I ended up with a complaint to the state, and a big apology from the hospital higher-ups, in their words, for “being bullied” by the doctors.)

I abruptly end my coffee break (duh) and get home within about 10 minutes. As I walk in the door, I am told that Pearlsky’s eye is starting to swell. A quick look, and I tell everyone we are going to the ER now. Her eye was swelling as it did last time, very quickly, and she was in a lot of pain. She was starting to seize. We were out the door within minutes. Big City Hospital is about two miles away.

“How much pain is she in?” asks the triage nurse. “Significant pain, more than I ever remember seeing.” And then she asks “How do you know?”

How do I know? Why? You want to challenge my assessment? You don’t believe me? I don’t want your value judgement on my abilities to gauge Pearlsky’s pain. (Ok, that is what I wanted to say.)

Trust me.

In the ER room, the nurse shows up quickly. We recognize each other, both been around there for over 20 years. One fantastic nurse.

I need to tell you that I really hate this place. Nine months ago we had a horrendous experience here, and I don’t come easily. I swear I am trying to behave and be nice, but please excuse me if I slip.

She smiles.

She then asks me what I think the problems is (cellulitis around her eye), and after a few minutes she asks me if I think she should get an IV set up (just to set up, not to do yet). I tell her we will need an IV antibiotic, hydration, and, by the way, there is no way we are staying overnight.

I do my best to ignore the 14 year-old resident that comes in.

The 16 year-old attending comes in, all smiles. Introduces herself (careful not to even mention her first name) and takes a quick look. She asks how bad the pain is, then shows she is a tad smarter than the triage twit. “How does she react to such pain?” Much better question.

See how she is posturing? Look at her wrists, elbows and shoulders (wrists bent, arms locked and twisted out). I know that is natural for some, this is the third time in her life I have ever seen this posturing. Look at her face. Her sounds. May not look like a lot of pain to you, but she has had two pain killers and more Valium than I will tell you.

She asks if I think anything else is wrong or may be causing the pain. I don’t know. She offers to try an anesthetic eye drop and I agree it is a great idea. Let’s see how she reacts.

The nurse brings in a 15 ml bottle and gives Pearlsky one drop in her eye. Within thirty seconds, literally, Pearlsky is laughing and “fine.”

May I have the bottle?

No. The truth is, for some reason, we cannot have these go home. I need to throw it out.

So I am paying for that bottle that has 100 drops, that cannot be used with another patient, and you are throwing it out?

I have to, hospital rules.

I learn later that some parents would abuse the drops, and the child would not realize something got in their eye or whatever. So, because some parents abused the one medication that removed Pearlsky’s pain, I was not allowed to have it. Good rule.

Before commenting on what I should have done, re-read the title of this post.

The doctor returns and she says that we will put Pearlsky on two oral antibiotics and we can go home. “That’s probably not the best plan. I think she needs an IV antibiotic,” I dare to say.

I did say it nicely. With a smile. No, really I swear (well, now, I swear I said it nice, I did not swear then). And I got the ideal response …

Tell me why.

She has had no food or drink for over six hours. She will be in pain until tomorrow, and will have nothing to eat or drink. By morning she will start to be dehydrated, by afternoon, very much so. She will throw up the first dose of antibotic on an empty stomach. We will be in here by 1 or 2 PM tomorrow, dehydrated, the infection worse, her eye completely swollen shut, and you will give her an IV antibiotic then.

We came home with two prescriptions after two IV bags of saline AND antibiotic.

Incredible nurse. Great doctor. Cranky dad. And hopefully a Pearlsky on the mend.

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